September 2007 Issue of ActionLink

ActionLink
News Service of The AIDS Institute
September 2007 | Issue 18
Journal
Gay Men’s Health Movement
EXPOSED
Action for social change through public policy research, advocacy and education
Message from the Executive Director
15 Plus Years Later…….
In the late 1980s a group of people living with HIV/AIDS and their allies
began meeting in Florida to discuss how they could positively impact
the course of governmental responses to the epidemic in Florida as
well as at the federal level. In this pre-HAART (Highly Active
Anti-Retroviral Therapy) and pre-Ryan White Program era options
always seemed terribly bleak, and the response of government was
already nearly a decade behind. This informal coalition began to grow
and flex its grassroots muscles with elected officials. It wanted to be
passionate in its actions, but, as records show, actions based on
scientific data. Thus, even in its very early days this agency
demonstrated a curiosity for research and bridging it with public policy.
The coalition came to be known as Florida AIDS Action.
On September 17, 1992, the agency was formally incorporated – 15
years ago this month. The early and middle 1990s saw the agency
grow into a statewide and regional advocacy organization with strong
emphasis on the need for public awareness and media work in its
state, regional, and federal policy work. As the end of the 1990s
approached, a number of strategic questions were under
consideration about the agency’s future. In 2000 it affiliated with the
Infectious Diseases and International Medicine program at the
University of South Florida (USF) College of Medicine in Tampa. This
decision solidified the agency’s commitment to an academic and
research basis for its work. Soon after the agency opened its first
national office in Washington, DC in order to more effectively
coordinate its national advocacy programs. At the same time the
media outreach, public education, and training programs grew.
In 2002 the agency underwent a major self-evaluation resulting in a
change in names to The AIDS Institute, re-branded itself, and further
clarified its mission and vision. Today, the Institute is a national
organization based in Washington, DC and on the USF medical
campus, with the mission of “promoting action for social change
through public policy research, advocacy, and education”. While the
focus of the Institute remains HIV/AIDS, efforts also include hepatitis,
malaria, tuberculosis, and sexually transmitted infections. In addition,
the scope of policy work spans the important arena of root causes of
illness often referred to as the social determinants of health (e.g.,
poverty), and critical healthcare reform issues such as lack of access
to evidence-based prevention, care, and treatment.
THE AIDS INSTITUTE
STAFF AND FELLOWS
Dr. Gene Copello, Executive Director
[email protected]
Peter Gamache, Director of Research
[email protected]
Sierra Johnson, Program Assistant
[email protected]
Jason Kennedy, State Policy Coordinator
[email protected]
Angela Knudson, Public Policy Fellow
[email protected]
Sriram Madhusoodanan, Research Fellow
[email protected]
Suzanne Miller, Public Policy Associate
[email protected]
Joe Riggs, Research Fellow
[email protected]
Denise Ruppal, Director of Finance & Administration
[email protected]
Michael Ruppal, Associate Executive Director
[email protected]
Michelle Scavnicky, Director of Education
[email protected]
Carl Schmid, Director of Federal Affairs
[email protected]
Developments over the past few years have included expansion of
efforts to include global and international concerns while continuing a
strong domestic tradition. Targeted projects initiated in the past two
years include United Faith Action Network (UFAN) and Women
Informing Now (WIN) Project. This year saw the launch of the State
Policy Program, which monitors health legislation in U.S. states and
territories and assists with grassroots mobilization and training on
various issues.
James Sykes, Global Policy Coordinator
[email protected]
The AIDS Institute is proud of the work of its staff, volunteers, and
board members over the past 15 plus years. We recognize all of their
work – including those who have passed away. We also recognize
that much more needs be done for us to see an end to AIDS, and to
ensure prevention services and healthcare access for all, at home and
abroad. To that end, the importance of all of our donors, supporters,
and partner organizations is also recognized. Together, we will bring
an end to the pandemic and, along the way, improve the world through
progressive social change.
National Office - 1705 DeSales St. NW, Suite 700
Washington, DC 20036-4420
Phone: 202-835-8373 Fax: 202-835-8368
2
A. Gene Copello
Shalini Wickramatilake, Global Policy Intern
[email protected]
LOCATIONS
Administrative Office - 17 Davis Blvd., Suite 403
Tampa, FL 33606
Phone: 813-258-5929 Fax: 813-258-5939
THE AIDS INSTITUTE
BOARD OF DIRECTORS
AND ADVISORS
Jonathon Berliner - Honolulu, Hawaii
Alicia Bunton - Chicago, Illinois
Dr. Cesar Caceres - Washington, DC
Selvy Hall - Pontiac, Michigan
Michael King - Anchorage, Alaska
Marie Kirk - Isleta, New Mexico
Ingrid Kloet-Garrett - Rio Rancho, New Mexico
Marylin Merida, President - Tampa, Florida
David Miller - Bronx, New York
Valerie Mincey, Immediate Past President Panama City, Florida
Peter L. Ralin, Secretary - Denver, Colorado
Dr. David Reznik - Atlanta, GA
William Schuyler - Alexandria, Virginia
Stephen Mark Seewer, Vice President San Francisco, California
Lew Sibert, Treasurer - Tampa, Florida
Bob Sullivan, R.Ph. - Reno, Nevada
Ivy Turnbull - Brooklyn, New York
Jeanne White-Ginder - Leesburg, Florida
Board Advisors
Princess Barbara Ndahendekire
Memorial Hospital of Uganda and Ndahendekire
Orphanage Uganda
Dr. David Holtgrave
Professor and Chair, Dept of Health, Behavior &
Society Bloomberg School of Public Health
Baltimore, Maryland
ABOUT ACTIONLINK
ActionLink represents one part of a national news
service launched by The AIDS Institute to inform and
educate the public about HIV and AIDS issues at
home and abroad. ActionLink, news service of The
AIDS Institute, is also comprised of news releases,
action alerts and newsflashes – updates that keep
the public informed, strengthening the bonds within
the AIDS Community. To subscribe or for questions
please contact: [email protected]
AIDS in the Prison System
With over 2 million people behind bars, the United States has the
highest incarceration rate in comparison to other countries and it
should be no surprise that HIV/AIDS is interrelated with this
community. According to the Centers for Disease Control’s 2004
statistics, 50 out of 10,000 people in state and federal prisons had
AIDS, and over 23,000 were HIV-positive. The incarcerated
community engages in higher risk behaviors that put them at the
forefront for contracting and/or spreading HIV. The resources
available to people in prison, such as care, treatment, and prevention
are not proportionate to this community’s prevalence. Neglecting this
problem will only make the situation worse, and in 2005, the
Department of Justice reported that AIDS cases in prisons were
three times higher than AIDS cases in the general population.
What’s Being Done About It - H.R. 1943 Stop AIDS in Prison Act
Introduced by Rep. Maxine Waters (D-CA), H.R. 1943 The Stop
AIDS in Prison Act, was approved unanimously by the Subcommittee
on Crime, Terrorism, and Homeland Security and the Judiciary
Committee and is ready for floor action. “I am proud that my
colleagues on the Judiciary Committee supported the Stop AIDS in
Prison Act. I look forward to the passage of this bill by the full House
of Representatives,” said Rep. Waters.
H.R. 1943 would require that all people placed in federal prisons be
tested for HIV upon entering and exiting prison, with the option to
opt-out. It would also call for comprehensive treatment for
imprisoned people who test positive, as well as HIV/AIDS awareness
education for all those who are incarcerated.
In a press release issued earlier this month, Rep. Waters
acknowledged The AIDS Institute’s support of H.R. 1943. She said,
“the bill has been endorsed or supported by several prominent AIDS
advocacy organizations, including AIDS Action, the AIDS Healthcare
Foundation, The AIDS Institute, Bienestar, the HIV Medicine
Association, and the National Minority AIDS Council, as well as the
Los Angeles County Board of Supervisors and the Los Angeles
Times.”
Why H.R. 1943 Matters to me…Growing up in California, I never
understood why my favorite uncle only made it home once every
year or two. For all I knew he lived far away and could not make it to
his mother’s birthday dinner or our Christmas celebration. It was not
until I was in the fourth grade that I learned of my uncle’s drug
problem, homosexual lifestyle, repeated crimes that put him in and
out of prison, and his HIV+ diagnosis. His absences from our family
events finally began to make sense, and I understood why my uncle
was never around. When he was able to make it home, I was filled
with joy. He was a fun uncle with great jokes, funny stories of my
dad’s childhood, and lots of energy. I loved my uncle, regardless of
his life’s choices.
During high school and my earlier years of college, my uncle and I
had open communication and he told me about his experiences in
prison and the realities that only those in the system knew about. I
was all ears when my uncle admitted to having unprotected sex while
in prison. Not having access to condoms was not a preventive
measure to stop him from engaging in sexual activities while
incarcerated. In fact, the risk of infecting his partners was not a barrier
either. Amazed by such acts, he assured me that his sexual partners
knew of his HIV+ status. I worried that once his partners were out of
prison themselves and entered into the community unaware of their
status, the cycle continued. I wonder if fewer people would be HIV+
had my uncle had access to condoms in prison and if he had made
better choices. (continued on page 8)
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Cover Story
Gay, Sexy and Healthy:
Above the Navel Matters
I can’t begin discussing the gay men’s health
Movement without acknowledging the enormous
contributions of the Movement’s “Daddy” – Eric
Rofes, a longtime educator and activist who worked
on a wide range of progressive social and political
justice issues. One of the key organizers of the gay
men's and LGBTI health movements in the United
States and abroad, Eric was, and is, widely regarded
as one of the most inspirational writers and thinkers
in these movements.
He died unexpectedly on June 26, 2006.
He challenged and inspired me and sometimes
really pissed me off, forcing me to defend my
positions when I thought they were very clear, thank
you. He was and is a mentor to me and many others
and a leader to so many more. He was, is, and will
be a defining force that continues to shape gay
men’s health broadly and more narrowly, my career
at the junction between HIV and gay men’s health. This piece is largely organized around principles and ideas put forth
by Eric. More about him, his life, and his work can be found at ericrofes.com.
The gay men’s health movement started with the free clinic movement of the 1960’s, was strongly influenced by the
feminist women’s health movement (think “Our Bodies Ourselves”), and continued with gay men addressing STD testing
and treatment at a grassroots, community level in the 70’s.
In 1995 the Gay and Lesbian Medical Association formally identified the need for a new generation of gay men’s health
work, and several years later, gay men and others working with gay male communities began organizing the gay men’s
health summits; the first of which took place in Boulder, Colorado in 1999. The most recent gay men’s health summit
happened in Salt Lake City in the fall of 2005; the next is scheduled for sometime late summer/early fall 2008 in Seattle.
My first summit was in Raleigh 2003 and not to be too dramatic, changed my life.
In between the gay men’s summits, there have been three LGBTI Health Summits encompassing all the beautiful letters
that make up the “queer” community; the most recent was in Philadelphia this past spring. Look for the next LGBTI Health
Summit in Chicago, 2009.
Eric named six foundational principles of the gay men’s health movement. They are as follows:
1. Replace the HIV-centric paradigm of health advocacy for gay men with holistic models that
integrate (but do not default to) HIV.
2. Rethink the crisis paradigm of HIV work and embrace contemporary understandings, meanings,
and implications of HIV for gay men of all colors & classes.
3. Challenge deficit-based models for work with gay men and replace them with asset-based approaches.
4. Strategically and politically confront structural forces challenging the well-being of gay & bi men.
5. Embrace a “big tent” vision of community, respecting diverse ways of organizing sex and relationships
among gay men's shame and guilt are the health hazards, rather than specific sex practices
and sex cultures.
6. Launch only efforts that are not overtly or covertly sanitizing, sanctimonious or moralistic.
Building upon this foundation that moves HIV out of the spotlight, banishes crises to the dustbin, focuses on assets rather
than deficits, acknowledges guilt and shame as the problem and not specific sexual cultures/behaviors, and says adios
to sanitized, moralistic messaging and sanctimony, the following eight core issues need to be addressed when doing gay
men’s health work.
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1. Explore the longings for intimacy and connection with other men and the social structures, networks, and
ideologies that promote or prevent such connections.
2. Understand the meanings of anal sex, penetration, & the exchange of semen and explore the relationships
between various racial, ethnic, and class-based masculinities and anal sex practices.
3. Grapple with the emotions, pleasures, & wounds emerging from childhood and adolescent experiences with
boys & men.
4. Tap into sources of resilience, creativity, determination, humor & playfulness in diverse gay men’s cultures.
5. Support healing from trauma: violence, abuse, homophobia, racism, poverty, AIDS and addiction.
6. Examine the ways transgression, risk, and the taboo interact with queer men's sexual desires, practices,
and subcultures.
7. Confront ways in which privileged masculinities of youth present challenges to & opportunities for well-being
as men age.
8. Revive and recreate community rituals, social structures, and networks to replace those lost during the most
intense crisis years of AIDS.
Those of us who are gay men, or work with gay men in the realms of HIV/AIDS and healthcare, can read the set of
principles and reflect on the core issues and quickly ascertain how far (or not) we have come. While I believe most
certainly progress has been made, and we should rightly celebrate that progress, the fact is we have a long way to go
to achieve the sort of vision Eric laid out. There have been several steps forward and just as many back or sideways,
and in the last several years a fair amount of running in circles, or worse, a callous disregard.
Many of us, and I do mean “us”, continue to treat gay men (ourselves) as hedonistic and pathological vectors of disease
trapped in eternal adolescence and in need of grim direction, if not punishment. That is, when we’re ignoring their needs
altogether.
Internal/external homophobia anyone?
We rarely consider gay men as having needs that exist above the navel. This is especially true of gay men of color –
next to nothing is published in the literature around gay men of color that examines issues other than the transmission
of STDs and HIV. Think it’s time to go beyond the navel-to-knee syndrome? Might some holistic research help begin to
reduce the sub-Saharan infection rates among black gay men?
What are the meanings of anal sex for gay men? What kind of value is placed on the exchange of semen? How do gay
men define intimacy and their relationships? Do we support their (our) definitions, their (our) understandings, or do we
wag our index finger and go “tut, tut, tut” when they aren’t hetero-normative? Do the expansive and creative ways in
which we have sex, share love and tenderness, embarrass us? Do we cover our ears and go “la, la, la” when any of us
dares to grapple with our human longing for natural, barrier-free sex?
Speaking of, what is your first reaction when you hear the word “bareback?” This loaded word that too often hijacks the
conversation with shrieks of “murder” and “suicide” is rather unlikely to be conjured as we shop online for the baby
shower we’ve been invited to, or when our friend shares smeary-cake pictures of their child’s first birthday over
cappuccino. Right?
Where do shame, judgment and prescriptive language fit into the social marketing campaigns targeting gay men where
we live? How do we use fear and crisis?
With the incredible work of researchers like Dr. Ron Stall, we understand more and more the effects of syndemics
(mutually occurring epidemics that enable HIV transmission), but do we really address depression among gay men, do
we truly grapple with childhood sexual abuse and the incidence of partner violence – all of which have been proven to
correlate to HIV incidence? No, we don’t. We acknowledge them and go back to the same ole same ole. Why? Well,
the easy answer is “that’s not how the funding works.” If you do HIV prevention, you have to talk, ad nauseum, about
those three letters, or the four letters in AIDS. You have to talk about condoms. And who could forget TESTING?
If only we could we simply (simply!) address depression, or maybe substance use, without uttering those letters. Gay
men increasingly turn away from those letters, having had enough after 26 years. I think we all understand the relevance
of those words, but after so much time when DEADLY DISEASE was the only barometer of our health, now we
increasingly click away the AIDS pop-up window as soon as it appears on our screen. We’re doing the same these days
with crystal meth – so much focus on one issue, out of context, perhaps isn’t such a good thing.
When was the last time you went to Capital Hill or your state legislature and talked openly about the needs of gay men?
When was the last time your HIV/AIDS organization featured gay men in your fundraising appeal? For comparison, when
was the last time women and children had the spotlight?
Are the messages we create for gay men (us) playful and creative and sexy? Are they culturally competent?
Or are they clinical, sterile, and devoid of the culture of fabulous? Do they engage the abundant diversity
in our community, or are they WHITE and MIDDLE CLASS through and through?
5
Gay, Sexy and Healthy: Above the Navel Matters - Continued
Do all gay men read Genre and have a timeshare near a body
of water? Are there other ways of being gay?
It is one of my major peeves when we talk about the HIV
epidemic and say, “we must focus on the African American
community and the gay community.” So, these are distinct,
located on separate islands surrounded by moats of
alligators? It’s similar to the fallacy that HIV is solely a
heterosexual phenomenon in Africa.
Pretending doesn’t create divisions where they don’t exist,
though the damage is anything but imaginary. Just because
we make people invisible doesn’t mean they aren’t real, and
have real needs. In that vein, the term “men who have sex
with men (MSM)” erases identity for many of the people to
whom it is applied, even as it accurately and efficiently
describes behavior. Is this erasure of identity a good thing?
Another peeve – “MSM communities.” Where do these
communities of MSM live?
Shouldn’t we be more selective in how we use these words?
These are just the beginning of the questions we must be
asking if we care about the health and wellness of gay men
and other men who have sex with men. It is my goal – and
that of the AIDS Foundation of Chicago (AFC) where I work
- to seek the answers and move us toward a paradigm of
holistic health.
Allow me to briefly highlight some of the projects in which AFC
plays an important role and which I hope are in line with the
principles and core issues of the gay men’s health movement.
First, the International Rectal Microbicide Working Group
(www.IRMWG.org) is a global network originally convened by
AFC, the Global Campaign for Microbicides, the Canadian
AIDS Society, and Community HIV/AIDS Mobilization Project
in the spring of 2005. The group consists of nearly 500
advocates, scientists and policy makers from 38 countries on
five continents engaged in the development of safe and
effective rectal microbicides.
Rectal microbicides, like vaginal microbicides, are being
studied and do not yet exist, but could be formulated as a gel
or lubricant, or perhaps delivered via enema. During vaginal
or anal intercourse, microbicides would provide extra
protection against HIV or STD transmission with condoms or
may offer some level of protection in the absence of condoms.
It’s critical we have options for safe® sex beyond latex.
Isn’t it amazing we can go to the corner and order up a coffee
in a hundred or more variations, but we essentially have ONE
way to protect ourselves against HIV when it comes to sexual
transmission?
Rectal microbicides won’t only be for gay men and other men
who have sex with men, the many women around the world
who have anal sex will need them as well if they are going to
stay healthy. It is estimated that the total volume of
heterosexual unprotected anal intercourse is up to five-fold
that of men who have sex with men.
6
That said, the impact of a rectal microbicide for gay men will
potentially be huge. Many surveys routinely reveal that
approximately half of gay men do not regularly use condoms
for anal intercourse.
Utilizing mathematical modeling, a team from the University
of California–Los Angeles (UCLA) recently evaluated the
potential impact of rectal microbicides on reducing HIV
transmission. Using a gay bathhouse setting for analysis,
it found that even if microbicide use was fairly modest
(30–50%), microbicide efficacy would only need to exceed
30% in order to have a significant impact in spreading
secondary infections. A 50% effective microbicide, used in
50% of sex acts would reduce the number of new infections
at disease invasion in the bathhouse by 13%. More
importantly, this model suggested that a microbicide with
greater than 30% efficacy would significantly reduce the
number of secondary HIV infections in the bathhouse.
Therefore, UCLA researchers believe that even a
moderately effective rectal microbicide would be of benefit
in gay bathhouse scenarios as well as in other high-risk
environments that include heterosexual AI.
Broadly, the cost savings to the global health system of
averting HIV infections with rectal microbicides has yet to
be mathematically modeled; however, it can be inferred
through vaginal microbicide cost modeling that the savings
would be in the billions when rectal microbicide use reduces
the burden of care and treatment required of health systems.
The prevention of HIV infection through rectal microbicides
will also reduce workplace illness and loss of productivity,
resulting in indirect financial savings.
Mathematical models don’t usually quantify the loss of love,
companionship, creativity or passion.
The first clinical safety trial of a microbicide used rectally
began early this year at UCLA. Though an important step
forward on the scientific front, there continue to be
significant socio-cultural challenges that must be overcome
if we are to be successful and develop safe, effective,
desirable rectal microbicides. Such challenges include
homophobia and the incredible stigma, shame and denial
around the prevalence of anal intercourse.
Finally, there is the Sexual Health Xchange (SHX.) In
February 2007, AIDS Action Committee in Boston, AIDS
Foundation Chicago, AIDS Project Los Angeles,
Philadelphia's Black Gay Men's Leadership Council and
New York's Gay Men's Health Crisis, representing the
diversity of gay, bi and same-gender-loving men throughout
the United States, launched SHX on Valentine's Day.
The mission of the SHX collaboration is to raise public
awareness about the sexual health needs of all gay men
and other men who have sex with men and to expand the
range of sexual health education options available to gay
men, especially those of color. Embracing a coalition
approach as the optimal way to address the cross-cutting
social issues underlying persistent health disparities that
affect gay men, SHX strives to intensify an exchange of
ideas and resources among individuals and allied
(continued on page 7)
The AIDS Institute Urges The
Presidential Advisory Council
on HIV/AIDS to Focus More
on Prevention Efforts
Federal Update
organizations and to expand opportunities for grassroots
participation in the promotion of gay men's sexual health as a
human rights issue. In doing so, SHX hopes to unite gay men
in their desire to have healthy and satisfying sex lives and to
situate HIV/AIDS within a broader sexual health agenda.
SHX’s first joint project, the LifeLube website, can be found at:
www.LifeLube.org and the companion blog can be found at:
www.LifeLube.blogspot.com, feature an array of information
and resources on gay men’s sexual health, overall wellness,
substance use, communication, relationships and spirituality.
“The sticky stuff that keeps gay men together” is presented in a
sometimes humorous, often sexy, always engaging way on both
portals. The “whole man” stays front and center, with due time
spent not just below, but above the navel.
So, in closing, I think it needs to be said that…
Gay men are valuable, loving human beings. We want to have
fulfilling, fabulous sex lives that aren’t focused on disease but
on connection, communication and intimacy, our cultures, and
who we are as people. We have hearts and minds and souls
that must be appealed to just as our flesh responds to a touch,
or a kiss.
In a headline we never see, most of us don’t abuse substances
or treat each other recklessly. And those of us that do run into
trouble, well, we’re not spawns of Satan or friends of Hitler, we’re
simply human, flawed like all of us, and should be treated
compassionately, lovingly, patiently. Sadly, we often choose to
isolate and demonize such men, causing untold pain that ripples
throughout our community and hurts all of us.
Most gay men want to take care of ourselves and those we love
and lust after, even with our mistakes and missteps. Though
many of the ways in which we live and love may look different
from general society’s norms and values, and some of our
struggles are specific to us, we nonetheless deserve respect,
attention and adequate societal resources to support our
collective health and well-being. We’re beautiful and we’re worth
it.
Gay, sexy and healthy is a goal for all of us, gay or not.
(Guest Writer: by Jim Pickett)
Jim Pickett running in the 2006 Florence Marathon
to support AFC via the AIDS Marathon Training Program.
Jim Pickett, Director of Advocacy at the AIDS Foundation of
Chicago is an international AIDS advocate and a person
living with HIV. As AFC’s representative on Capitol Hill, Jim
worked closely with diverse stakeholders in Illinois and
across the U.S. in helping shape and advance Ryan White
CARE Act reauthorization legislation, which was signed into
law in 2007. As a leading advocate for new HIV prevention
strategies, Jim co-founded the International Rectal
Microbicide Working Group in 2005. He currently serves as
the co-chair of the Chicago Crystal Meth Task Force and is
the principal creator of the new gay men's sexual health and
wellness website and blog called LifeLube.org. He is running
his 4th marathon this year through the National AIDS
Marathon Training Program and was inducted into Chicago's
Lesbian and Gay Hall of Fame in 2005.
You can support Jim in his marathon efforts and help him
raise funds to reach is goal, go to:
http://aidsmarathon.com/participant.asp?runner=CH-1001&
EventCode=CH07
For more information about the National AIDS Marathon
Training Program, go to:
www.aidsmarathon.org
HOPWA Program Continues To Serve People in Need
Since 1992, The Housing Opportunities for Persons with AIDS (HOPWA) program has served thousands of low-income persons
who are living with HIV/AIDS and in need of housing assistance. In addition to providing housing assistance, HOPWA funds can
also be used to provide supportive services such as mental health services, drug and alcohol abuse treatment and counseling and
nutritional guidance.
Administered by the U.S. Department of Housing and Urban Development (HUD), the HOPWA program has distributed $3.4 billion
in funds since 1992. HOPWA funds are distributed through three different streams: a formula program (which is the largest stream),
a competitive program, and technical assistance program. In 2007, HOPWA was allocated $286 million in funds and served
approximately 67,000 households in 122 different jurisdictions. During 2003 and 2004, HOPWA was funded at the highest levels
yet, $290.1 million and $294.8 million, respectively. During these years, the program was able to reach the greatest number of
households, more than 78,000. For FY 2008, President Bush has requested $300 million for the HOPWA program. Both the House
of Representatives and the Senate Appropriations Committee have approved funding for FY 08 at $300.1 million. (Suzanne Miller)
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AIDS In the Prison System (continued from page 3)
Would the opportunity to be tested upon entering and exiting
prison have been beneficial to those who encountered my
uncle and his risky behaviors? I have no doubt.
This was a turning point in my life and shortly after, my
activism in the HIV community began. My uncle’s life
experiences have motivated and inspired me to see through
that there is something done about the spread of HIV in the
prison system. He will continue to do what he does, and all I
can do is help those that he is hurting. I love my uncle, but his
lifestyle choices will not change, and for that reason, I can
only hope that H.R. 1943, The Stop AIDS in Prison Act,
passes. (Angela Knudson)
Black Gay Men - At the
Crossroads and In the Crossfire
In all the back and forth and jockeying for position that has
occurred in the 25 years of the HIV/AIDS epidemic, one
significant indisputable and far too neglected fact remains:
Black Gay Men are horrendously over represented in this
epidemic. Since the inception of the epidemic, black men
have constituted a far higher percentage of cases among gay
men than exist in the overall gay population, MSM risk activity
accounts for a much greater proportion of cases among black
men than would seem to exist in the general population. In
short, if the African American house can be said to be on fire,
black gay men must constitute a raging inferno.
Against this backdrop, has historically stood a small but
determined group of indigenous community based service
providers across the Nation that has bravely battled
homophobia in black communities, racism in white gay
communities and indifference, at best, from government and
private resource partners and struggled to piece together a
patchwork of HIV/AIDS service providers. While it often
seems that mainstream gay communities wish to move on
from AIDS and the majority of the Black Community would
rather have a titillating yet ultimately unavailing conversation
about mythical brothers on the down low, thankfully, a new
player has arrived on the scene.
The National Black Gay Mens Advocacy Coalition
(www.nbgmac.org) was formed two years ago in Miami, FL
as a reflection of a beleaguered community's determination
to get our proverbial act together with regards to concerted
and effective action to garner attention and resources to this
community. It was formed in recognition of the fact that for far
too long and way too often, when critical questions regarding
HIV/AIDS prevention and treatment issues are discussed in
Washington DC and in State Capitols from Boston to Baton
Rouge, black gay men are absent from the table. It aims to
address the glaring and near universal exclusion of black gay
men from the critical behavioral research that goes into
designing and implementing effective HIV prevention
interventions.
We have, admittedly, tried and failed before, our ranks
decimated by fallen heroes and sheroes and the kind of
internecine warfare often endemic in traditionally
disenfranchised communities, many entities have fallen
victim. As a participant in some of the earlier iterations,
however, this feels different. Spurred on by an increasingly
dire epidemiological picture and a deafening silence on the
part of some traditional allies, we have come together out of
necessity - it is, indeed, our best and perhaps last chance to
8
mobilize a community to address the continuing and
unabating devastation of black gay male communities from
Baltimore to Birmingham. As cliche as it sounds, I genuinely
do not perceive that this particular group sees failure as an
option and so we move forward.
From Congressional Black Caucus briefings to strategically
scheduled meetings with key Hill and Administration officials,
NBGMAC has had some incredible successes. We continue
to move across the Country using black gay prides as the
backdrops for presenting vital information on our policy
positions and plan of action to the communities we represent.
We welcome all activists and concerned readers of ActionLink
to join with us. We are proud to count The AIDS Institute as
a key early member and we look forward to moving this
country towards a truly progressive, socially just vision of
HIV/AIDS prevention and treatment in this country.
(Guest Writer: Mark Jason McLaurin, Executive Director of
the New York State Black Gay Network and Secretary of the
National Black Gay Mens Advocacy Coalition)
C2EA to Re-launch
AIDSVote.org
The Campaign to End AIDS (C2EA) will be re-launching
AIDSVote.org. AIDSVote is a candidate and voter education
project working to make sure candidates for public office know
what it takes to end AIDS and voters who care about ending
AIDS know where the candidates stand on our issues.
AIDSVote is a project of C2EA, a national grassroots
organizing and advocacy project dedicated to ending AIDS
through mobilization and advocacy led by people living with
HIV/AIDS and members of the communities hardest-hit by the
epidemic.
With the assistance of advocates, activists and policy analysts
AIDS Vote had developed its 2008 platform that includes both
domestic and global issues.
The Domestic 10-pt Platform is categorized around the four
main tenants of C2EA – treatment, prevention, research and
respect.
Under treatment, AIDS Vote calls for our the next
administration to develop a plan to provide universal access
to HIV prevention, treatment, care and support, $7 billion in
care expansion for low-income PLWHAs, pass the Early
Treatment for HIV Act (ETHA) and to end all AIDS Drug
Assistance Program (ADAP) waiting lists.
Under prevention AIDS Vote is calling for at least $1 billion a
year for science based preventions strategies, elimination of
funding for ineffective abstinence-only-until-marriage
programs, supporting the REAL Act, ending the ban on
federal syringe exchange funding and increasing funds for the
Housing Opportunities for Persons with AIDS (HOPWA)
program and other care coordination and support initiatives.
(continued on page 9)
(continued from page 8)
Under research , increasing funding for the National Institutes
of Health (NIH) and its AIDS program by 10% each year and
pass the Microbicide Development Act. And under respect,
AIDS Vote is calling for full human rights for PLWHAs including
opportunities for work, self support, medical privacy and
conformance with the 1983 Denver Principles
(http://www.napwa.org/documents/denver.pdf ) and to reduce
the number of PLWHAs in the criminal justice system by half
by changing the federal penalty for crack-cocaine and
supporting H.R. 460.
The Global Platform was developed as part of a collaboration
with STOP-AIDS 08 and calls for providing $50 billion by 2013
for the global fight against AIDS, adding 1% to the annual
federal budget to expand foreign aid to fight poverty and
disease; invest resources to train and hire health workers
support trade policies that protect and expand the right to
affordable generic drugs, meet the needs of children orphaned
by AIDS through community-based support, promote the
political and economic empowerment of women and girls, drop
the debt of the most impoverished countries, cut TB and
malaria relate deaths in half and to fight poverty worldwide.
To see the complete domestic and global platform go to
www.aidsvote.org
AIDS Vote will be conducting advocate teach-ins on each of
the platform planks. Advocates and activists from around the
country are then able to use this platform to reach out to
candidates at the local, state and federal levels to educate
them about AIDS issues. AIDSVote is nonpartisan – it’s not
about getting any particular candidates or officeholders elected
or reelected, but rather about making sure all candidates and
officeholders know what it takes to end AIDS and are held
accountable for their actions. To get involved with AIDS Vote
go to www.aidsvote.org or call 1-877-ENDAIDS. (Guest Writer:
Christine Campbell, Director, National Advocacy and
Organizing, Housing Works, Inc.)
National Coalition for
LGBT Health
The National Coalition for LGBT Health was formed on October
14, 2000 when a group of community health advocates
convened in Washington, DC to discuss the greater inclusion
of LGBT health issues, including HIV/AIDS, in the nation’s
Healthy People 2010 objectives. “HP2010” is the ten-year
federal public health blueprint that addresses prevention,
disparities in access and barriers to care, while concurrently
setting the public health standards to measure the “health of
America.” Working with federal officials, the founders of the
Coalition assisted in adding the first health indicators related
to the LGBT community into Healthy People (HP). They also
developed and wrote a companion document that illustrated
the full range of health needs of the community.
Since then the Coalition has expanded its work to include
numerous LGBT health issues, including HIV/AIDS. This
month, the Coalition will host its fall meeting which will focus
on increasing the number of HIV/AIDS and LGBT health
organizations considering applying for federally qualified health
center (FQHC) status.
FQHC status would provide
organizations with an additional revenue stream resulting in a
more stable funding source while reducing the overwhelming
dependence on Ryan White funds. In addition, becoming a
FQHC will give these organizations the advantage of enhanced
Medicare and Medicaid reimbursements, medical malpractice
coverage, access to National Health Service Corps and other
benefits. As part of this the Coalition is offering scholarships to
the fall meeting, a self-assessment tool and guide services to
HIV/AIDS service organizations. If you are interested in any of
these services or about learning more about FQHC status,
please contact the Coalition at the information below.
In addition to its work on FQHCs, the Coalition is currently
working on numerous federal policy objectives including
Healthy People 2010/2020, a SAMHSA training curriculum and
LGBT survey inclusion. The Coalition has successfully worked
to maintain LGBT health objectives in Healthy People 2010. If
conditions or communities are not counted in the HP process,
little or no resources will be allocated to meet their needs. Under
the current administration, it has been a continual struggle to
keep these health indicators in the document. Advocacy efforts
have included regular contact with the leadership of the HP
2010 agencies responsible for the maintenance and evaluation
of HP 2010’s impact. Most recently, this has included meetings
with the Surgeon General and staff from US Department of
Health and Human Services, Office of Disease Prevention and
Health Promotion.
The Coalition is already initiating
conversations to address LGBT health issues for HP 2020; our
priority is to ensure the inclusion of the LGBT community’s
diverse voices as the 2020 document is shaped and prepared.
In addition, the Coalition has worked as the lead organization
to advocate for and develop a staff training curriculum produced
by the Substance Abuse and Mental Health Service
Administration (SAMHSA).
This curriculum will enable
substance abuse treatment providers to train staff to become
culturally competent when working with the LGBT community.
The Coalition is also working to secure a sexual orientation
question on the National Health Interview Survey (NHIS). NHIS
is the largest and most comprehensive federal health survey,
which sets the standard for other federal and state health
surveys. The exclusion of sexual orientation data makes it
difficult to effectively advocate for health strategies, funding and
programs that address the needs of our community. (Guest
Writer: Rebecca Fox, Director of National Coalition for LGBT
Health) See website information on page 19
Since its founding, the Coalition has grown to over fifty
organizations, including The AIDS Institute, as well as
numerous individual members. If you want to learn more about
the Coalition, please see our web site at http://lgbthealth.net
Rebecca Fox - [email protected]
also teaches human sexuality at the George Washington
University. She serves on the boards of Choice USA, a national
organization that mobilizes and supports the diverse, upcoming
generation of leaders who promote and protect reproductive
choice, and the Washington Area Clinic Defense Task Force
(WACDTF), a local organization working to ensure access for
all women to reproductive health services. Prior to coming to
the Coalition, Fox worked as the Assistant Director for Public
Policy at SIECUS, the Sexuality Information and
Education Council of the United States.
9
Medicare Part D Improvement
Bill Introduced In The House
Making an impact on
the fight against HIV/AIDS
for over 15 years
Promoting Action for Social Change
Through Public Policy Research,
Advocacy and Education
10
www.theaidsinstitute.org
Federal Update
For HOPWA, both the House and Senate have
recommended similar increases of $14 million for a total of
$300.1 million.
While all these proposed increases are way below what it is
actually needed it is the best we can get this year and we
must fight hard to keep these increases, since the President
has vowed to veto these bills due, according to him, their high
funding levels.
While we would prefer to see no funding for them, The AIDS
Institute is also urging the Congress to support the Senate
cut of $28 million to ineffective abstinence-only until marriage
programs. This compares to the House ill advised increase
of $28 million.
Congress To Decide Domestic
AIDS Funding This Fall
This year, we have an excellent opportunity to increase funding
for Ryan White care and treatment programs, CDC HIV &
Hepatitis Prevention, NIH research, and HOPWA. Both the
House and the Senate have recommended increases, but there
are big differences between the two, and now they must
reconcile their differences this fall. The AIDS Institute is working
to make sure the highest funding levels will prevail in the end.
The House of Representatives has already passed the FY08
Labor, Health and Human Services, and Education and
Transportation, HUD appropriations bills. In the Senate the two
bills have been approved by the Senate Appropriations
Committee. Due to time constraints, it is unlikely they will be
considered on the Senate floor. That means the existing
versions of the bills will probably be merged with other bills and
reconciled in a Conference Committee, usually composed of the
Appropriations Subcommittee members.
In order to make sure the higher numbers will prevail in
Conference, The AIDS Institute has issued a grassroots Action
Alert urging people to contact their members of congress.
Additionally, as co-chair of the AIDS Budget and Appropriations
Committee, we have organized with our colleagues a number of
key Hill visits for the next month. Finally, The AIDS Institute will
be sending a letter to all conferees in support of the higher
funding levels.
For Ryan White programs, we are asking for an increase of at
least $105 million, which is the total of the proposed high funding
levels, mostly contained in the House version of the bill. This
would translate into an increase of $32.3 million for Part A; $5
million for Part B; $41 million for ADAP; $23 million for Part C;
and $3.5 million for Part D. Additionally, we support nominal
increases for the AETCs and the Dental Program, which did not
receive any increases in the bills, so far.
For CDC HIV Prevention programs, we are seeking an increase
of $17.4 million, which was contained in the House version of
the bill. This is far better than the Senate position, which has
proposed no increase. The same is true for CDC Hepatitis
Prevention programs, which the House proposed a $1 million
increase, while the Senate proposed no new funding.
For NIH Research, we are advocating for at least the $1 billion
increase that was contained in the Senate version of the bill.
The House recommended increase is only $750 million.
Finally, we are urging the Conferees to support the House
position not to cut the CDC HIV prevention program by $30
million to fund the Early Diagnosis Grant Program-a testing
program that no states currently qualify for. (Carl Schmid)
Representative Lee Introduces
Bill to Lift HIV Travel and
Immigration Bans
On August 2nd, Representative Barbara Lee (D-CA)
introduced “The HIV Nondiscrimination in Travel and
Immigration Act of 2007 (H.R. 3337)”, which would repeal
the current ban on people living with HIV/AIDS from traveling
or immigrating to the United States. The AIDS Institute
applauds Ms. Lee for taking this important first step in
reversing this archaic and unjust policy, and urges its
passage in Congress. The bill was introduced with fifteen
co-sponsors.
“During the past twenty years that this policy of discrimination
has been in place, we have learned a great deal about HIV
transmission and prevention. The current ban is based on
ignorance and fear, and it is time that policy corresponds with
current science”, commented Dr. Gene Copello, Executive
Director of The AIDS Institute.
On December 1, 2006, World AIDS Day, President Bush
directed his Administration to initiate a rulemaking that would
propose a categorical waiver for HIV positive individuals to
enter the U.S. on short-term visas. “While The AIDS Institute
was pleased the President recognized the need for what he
described as ‘Ending Discrimination Against People Living
With HIV/AIDS’, when and if it is promulgated it would only
address short term visits and the underlying discriminatory
law would still stay on the books,” noted Carl Schmid,
Director of Federal Affairs at The AIDS Institute. “The only
real solution is to repeal the current law.”
It is important to note that Representative Lee’s bill does not
completely overturn the current law, but it gives authority to
the Secretary of Health and Human Services to determine
which diseases should be included on the list of
communicable diseases and the bill states, “HIV infection
should not be required by law to be included on such list.”
(continued on page 12)
11
Are We Doing Enough to
Provide the Providers:
The Healthcare Workers’ Dilemma
(continued from page 11)
The United States is one of 13 countries that currently have a
travel and immigration ban for persons with HIV. These
countries include: Armenia, Brunei, China, Iraq, Qatar, South
Korea, Libya, Moldova, Oman, The Russian Federation, Saudi
Arabia, and Sudan.
“As the United States continues to advocate for increased
HIV/AIDS awareness worldwide, our policies at home are
undermining our credibility as a global leader in the fight against
HIV/AIDS,” added Copello. “Because of this policy, the US has
not been able to host an International AIDS Conference in 18
years, and will not be able to in the future. We must join other
industrialized nations in lifting the travel and immigration ban
for HIV positive individuals.” (Suzanne Miller)
House SCHIP Reauthorization Bill
Includes Medicare Improvements
For HIV/AIDS
Just prior to their August recess, both the House and Senate
passed different versions of bills that would reauthorize the
State Children’s Health Insurance Program, which expires on
September 30, 2007. The House bill, called the Children's
Health and Medicare Protection (CHAMP) Act, contains
several Medicare and Medicaid improvements, including two
that directly affect people living with HIV/AIDS. CHAMP, which
has a price tag of $50 billion, passed the House on August 1
by a vote of 225 to 204. The bi-partisan Senate bill, which totals
$35 billion, passed the next day by a veto proof margin of 68
to 31. While both bills are fully paid for, the President has vowed
to veto either of them. Before the bill reaches his desk, the
House and Senate will have to reconcile their differences. In
conference, The AIDS Institute will be strongly advocating that
the important AIDS specific Medicare Part D provisions remain
in the final bill. Additionally, we are supportive of changes
included in the House bill that provides flexibility to the states
in the way they administer Abstinence only until marriage
grants.
The two provisions of particular importance to persons living
with HIV/AIDS are the following:
Sec. 221. Including costs incurred by AIDS Drug Assistance
Programs (ADAPs) and Indian Health Service in providing
prescription drugs toward the annual out of pocket threshold
under Part D. This policy change is one of the HIV community’s
highest priorities. If enacted, expenditures by the AIDS Drug
Assistance Programs (ADAP) would count towards True Out
of Pocket (TrOOP) expenses. This provision was scored by
the Congressional Budget Office at $100 million over 5 years.
(This includes the entire section which includes not only ADAP
but also Indian Health Service drug costs.)
Sec. 225. Codification of special protections for six protected
drug classifications, including HIV Antiretrovirals. Another one
of our highest priorities for this Congress.
12
This provision requires “all or substantially all” antiretrovirals,
along with five other classes of drugs, on every Medicare Part
D drug plan formulary. Currently, the Centers for Medicare and
Medicaid Services (CMS) requires drug plans through annual
guidance to cover “all or substantially all” drugs in the six
protected classes. Unfortunately, this requirement is not always
implemented and enforced, and CMS is under intense pressure
each year not to continue the expanded coverage guidance.
The CBO scored this provision as costing nothing over the next
five year.
In a related matter, in late July, Sens. Gordon Smith (R-OR) and
John Kerry (D-MA),
members of the Senate Finance
Committee, introduced the “Medicare Access to Critical
Medications Act of 2007” (S. 1887), a bill that would legally
require “all or substantially all” antiretrovirals, along with five
other classes of drugs, on every Medicare Part D drug plan
formulary.
The House CHAMP bill also reauthorized a portion of Title V of
the Social Security Act, which currently provides states with $50
million in funding for extreme abstinence-only-until-marriage
programs. While The AIDS Institute would have like to see the
program totally eliminate, the House bill contains several
improvements including 1) programs must contain medically
and scientifically accurate information; 2) states are provided
flexibility to use funds for more comprehensive programs which
discuss abstinence, but may also include information on birth
control; and 3) require funded programs to have been proven
effective at decreasing teen pregnancy, STD, and HIV/AIDS
rates. (Carl Schmid)
Early Treatment for HIV Act (ETHA)
Introduced in the House
Speaker of the House Nancy Pelosi (D-CA), along with 53 other
members, introduced the Early Treatment for HIV Act (ETHA)
(H.R. 3326) on August 2. The bipartisan bill was announced at
a press conference by lead co-sponsors Reps. Ros-Lehtinen
(R-FL) and Eliot Engel (D-NY). ETHA would provide states the
option of amending their Medicaid eligibility to extend coverage
to uninsured, low-income persons with HIV, before they
progress to full blown AIDS. The bill was introduced with equal
bipartisan support; 27 Democrats and 27 Republicans.
ETHA, which is modeled after the highly successful Breast and
Cervical Cancer Prevention and Treatment Act, has been
introduced in previous Congresses and a reserve fund for a
demonstration project was included in the 2008 Congressional
Budget Resolution.
At the press conference, Rep. Engel said “treating patients with
HIV will preserve the quality of life for thousands of Americans.
It is also more cost effective for the federal government since it
is much more expensive to treat patients with AIDS than HIV.
It’s sensible and humane public policy at its best. It will also
save people’s lives.”
Rep. Ros-Lehtinen added, “this legislation will correct a really
devastating waste of resources and human capital where
persons must become fully stricken by full blown AIDS before
the Medicaid system can cover their treatment.
(continued on page 13)
(continued from page 12)
It’s really counterproductive to our efforts to contain the AIDS
virus when we have tens of thousands of individuals who can be
helped manage their HIV infection, but are not sick enough to
qualify for Medicaid coverage. This legislation will right this
wrong and I urge my colleagues to support this bi-partisan effort
at tackling one of the worst epidemics to hit mankind.”
Although Speaker Pelosi could not attend the press conference,
in a release she issued she said “effective drug treatments have
improved both the health and quality of life for thousands of
people living with HIV/AIDS. However, many uninsured,
low-income HIV-positive individuals still do not have access to
these life-saving medications because they individuals generally
do not meet Medicaid requirements until they are disabled by
full-blown AIDS. As a result, there is a pressing need to eliminate
barriers to early drug therapy.”
In a press release issued by The AIDS Institute, Carl Schmid,
Director of Federal Affairs, said “since there are so many people
living with HIV/AIDS in our country who are in need of care and
treatment, but are not receiving it, passage of ETHA will help
thousands of low-income people.” According to the Institute of
Medicine report, “Public Financing and Delivery of HIV/AIDS
Care: Securing the Legacy of the Ryan White CARE Act'',
233,000 of the 463,070 people living with HIV in the U.S. who
need antiretroviral treatment do not have ongoing access to
treatment. This does not include an additional 82,000 people
who are infected but unaware of their HIV status and are in need
of antiretroviral medications.
A companion bill, S. 860, has been introduced in the Senate
under the leadership of Sens. Gordon Smith (R-OR) and Hillary
Clinton (D-NY). An additional 29 Senators have signed on as
co-sponsors. The Senate has previously passed an ETHA
demonstration project.
In addition to Speaker Pelosi, and Reps.Engel and
Ros-Lehtinen, original co-sponsors include: Henry Waxman
(D-CA), Edward Markey (D-MA), Edolphus Towns (D-NY),
Bobby Rush (D-IL), Anna Eshoo (D-CA), Albert Wynn (D-MD),
Gene Green (D-TX) Diana DeGette (D-CO), Lois Capps (D-CA),
Mike Doyle (D-PA), Thomas Allen (D-ME), Jan Schakowsky
(D-IL), Tammy Baldwin (D-WA), Darlene Hooley (D-OR), Hilda
Solis (D-CA), Jay Inslee (D-WA), Jim Matheson (D-UT), Anthony
Weiner (D-NY), Charles Rangel (D-NY), James Clyburn (D-SC),
Rahm Emanuel (D-IL), Jim McDermott (D-WA), Maurice
Hinchey (D-NY), James Langevin (D-RI), Barbara Lee (D-CA),
Chris Shays (R-CT), Chris Smith (R-NJ), Thaddeus McCotter
(R-MI), Mary Bono (R-CA), Mark Kirk (R-IL), Ron Paul (R-TX),
Luis Fortuno (R-PR), Charles Pickering (R-MS), James Walsh
(R-NY), Frank LoBiondo (R-NJ), John McHugh (R-NY), Jim
Saxton (R-NJ), Rodney Frelinghuysen (R-NJ), Jerry Weller
(R-IL), Michael Castle (R-DE), Charles Dent (R-PA), Jon Porter
(R-NV), Fred Upton (R-MI), Pete Sessions (R-TX), Lincoln
Diaz-Balart (R-FL), Mario Diaz-Balart (R-FL), Peter King (R-NY),
Jim Ramstad (R-MN), Heather Wilson (R-NM), Michael
Ferguson (R-NJ), and Vito Fossella (R-NY).
The AIDS Institute has sent a thank you letter to each of the
sponsors. If you see your member on the list, please send a
note of thanks as well. And if your member is not on the list,
please encourage them to become a sponsor of ETHA today. In
our thank you letter we urged the Energy and Commerce
Committee to conduct a hearing on ETHA very soon and urged
passage in this Congress. (Angela Knudson)
GLOBAL ORGANIZATION
OF THE MONTH
www.pgaf.org
Pangaea was founded on World AIDS Day, 2001 by the San
Francisco AIDS Foundation. Pangaea’s early work focused
on broadening access to HIV/AIDS antiretroviral treatment
(ARVs) in the developing world, with significant projects in
Rwanda, South Africa and Uganda. Pangaea helped develop
some of the first HIV clinics in these regions and assisted the
national health ministries in South Africa and Rwanda in the
development of their first country-wide AIDS treatment plans.
While continuing work in Africa, Pangaea has more recently
broadened its efforts to including the planning and
implementation of large scale treatment access projects in
Asia and Eastern Europe, with special emphasis on HIV
epidemics fueled by injection drug use. Pangaea also has
special expertise working with the private sector to maximize
HIV/AIDS prevention and treatment efforts, including the
creation of a model clinic and training center funded by Pfizer
Inc at Makerere University in Kampala, Uganda and the
planning and implementation of a worldwide employee
HIV/AIDS training and treatment program for Chevron Corp.
Pangaea Global AIDS Foundation is a mission-based, not for
profit consulting organization dedicated to ending the
pandemic and human suffering caused by HIV/AIDS.
Pangaea has special expertise in the development and
execution of sustainable national treatment strategies for
HIV/AIDS focused on settings with insufficient treatment
capacity and large or underserved HIV+ populations.
Pangaea’s partners include organizations engaged in large
scale HIV/AIDS treatment delivery such as national health
ministries, NGOs, universities, foundations and corporations.
Using existing healthcare systems as a starting point,
Pangaea helps its partners strengthen treatment
infrastructure and systems of care and develop new treatment
capacity as needed in order to increase access to care in
target populations.
Disclaimer about contents: Guest articles, and any opinions
expressed, do not necessarily reflect the views of The AIDS
Institute. The information contained herein has been obtained
from sources believed to be reliable, however, its accuracy
and completeness are not guaranteed.
Disclaimer about products, services or treatments: Any
therapy, product, or service presented in ActionLink Journal
and/or posted on www.theaidsinstitute.org is for informational
purposes only and NO medical claims or endorsements are
expressed or implied, either directly or indirectly, regarding
the therapies, products or services presented herein.
13
World News
The Southern African
Development Community
On April 1, 1980, a loose alliance of nine majority-ruled States
in Southern Africa formed the Southern African Development
Coordination Conference (SADCC) following the adoption of
the “Lusaka Declaration – Southern Africa: Towards
Economic Liberation”, in Lusaka, Zambia. The main goal of
SADCC was to coordinate development projects in order to
lessen economic dependence on the then apartheid South
Africa. The founding Member States were Angola, Botswana,
Lesotho, Malawi, Mozambique, Swaziland, United Republic
of Tanzania, Zambia, and Zimbabwe.
On August 17, 1992, the Southern African Development
Coordination Conference (SADCC) was transformed into a
Development Community (SADC) when the Declaration and
Treaty was signed at the Summit of Heads of State and
Government in Windhoek, Namibia. The signing of the
Declaration and Treaty by the Heads of State conveyed legal
status to the Southern African Development Community
(SADC).
Headquartered in Gaborone, Botswana, the
Southern African Development Community currently consists
of fourteen Member States: Angola, Botswana, the
Democratic Republic of Congo, Lesotho, Madagascar,
Malawi, Mauritius, Mozambique, Namibia, South Africa,
United Republic of Tanzania, Zambia, and Zimbabwe.
The SADC Vision
The vision of the Southern African Development Community
is one of a common future, a future within a regional
community that will ensure economic well-being,
improvement of the standards of living and quality of life,
freedom and social justice and peace ad security for the
peoples of Southern Africa. This shared vision is anchored
on the common values and principles and the historical and
cultural affinities that exist between the peoples of Southern
Africa.
SADC objectives include regional economic
integration, poverty alleviation, harmonization and
rationalization of policies, and strategies for sustainable
development in all areas. The SADC Trade Protocol calls for
an 85 percent reduction of internal trade barriers. Within the
SADC region, the national currencies of Namibia, Lesotho,
and Swaziland are linked to the South African rand through
the Common Monetary Area (CMA). SADC members are
working to eliminate exchange controls in preparation for an
eventual single currency in the region. In March 2004, the
SADC executive secretary announced a strategic plan that
sets out a time frame for the economic integration of the
region. Some of the outlined measures included: the creation
of a free trade area by 2008; establishment of a SADC
customs union and implementation of a common external
tariff by 2010; establishment of a SADC central bank and
preparation for single SADC currency by 2016; and a common
market pact by 2012.
14
i
On August 16th of this year, the Kaiser Family Foundation, in
its “Kaiser Daily HIV/AIDS Report”, reported that United
Nations Special Envoy for HIV/AIDS in Africa, Elizabeth
Mataka, urged “leaders from SADC member nations to
ensure that their commitment of allocating 15% of their
national budgets to the health care sector is realized”. This
was a reminder of the pledge SADC leaders made in April
2001 to commit more resources to health care and set a target
of allocating 15% of their national budgets toward improving
the sector. The AIDS Institute joins Ms. Mataka in urging the
SADC leaders “to look at HIV/AIDS, TB, and Malaria in the
context of a broader picture of poverty, underdevelopment
and inequality. Improving the health sector and HIV/AIDS
services would build confidence, demonstrate political
commitment, and attract additional international support and
funding”. (James Sykes)
References:
1. Energy Information Administration (EIA) – Official Energy
Statistics from the US Government, Country Analysis Briefs,
http:/www.eia.doe.gov/emeu/cabs/sadc.html
2. Southern African Development Community, SADC Corporate
Profile, http://www.sadcreview.com/sadc/sadc_profile.htm
3. Kaiser Family Foundation, Kaiser Daily HIV/AIDS Report, August
16, 2007, http://www.kaisernetwork.org/dailyreports/hiv
How to Approach the War Against TB
Tuberculosis (TB) is one of three main killer infectious
diseases. Over one-third of the world's population now carries
the TB bacterium, and new infections occur at a rate of one
per second. While the number of TB cases is increasing
worldwide; countries with high HIV prevalence in particular
have the largest number of cases of TB. According to the
World Health Organization (WHO), nearly 2 billion people
have tuberculosis. Annually, 8 million people become ill with
tuberculosis, and 2 million people die from the disease
worldwide. HIV is the strongest risk factor for those with
Mycobacterium Tuberculosis (MTB) to progress from latent
infection to disease: a 10-fold increased risk (5% to 50%) in
a lifetime.
TB is the commonest opportunistic infection in HIV/AIDS. 10
-15% of HIV/AIDS patients have TB as the initial presenting
cause. It has been associated with faster AIDS progression
for those who are HIV positive and contract TB leading to high
death rates. TB is the second leading single cause of death
in Africa after malaria according to the United Nations World
Health Organization (WHO). The prevalence rate of
co-infection with HIV is very high in Africa, over 50% in some
countries. Uganda for example, records an estimated 80,000
new cases of tuberculosis every year, half of them among
people infected with the HIV virus that causes AIDS, health
officials said. "We only managed to detect 49 percent of those
cases in 2006," said Francis Adatu, head of the TB and
leprosy unit in the Ministry of Health. "HIV/AIDS is the main
trigger of dormant TB in the population today," he added. The
World Health Organization (WHO) representative in Uganda
expressed concern that Uganda continued to lag behind in
meeting the global targets on detection and treatment of TB.
He said Uganda was 15th out of 22 countries with high TB
incidence.
(continued on page 15)
(continued from page 14)
The disease affects mostly people in the 15-49 age groups and
often kills within two years if not treated, according to the health
ministry. The global strategy to stop TB relies on early detection
and effective treatment. Global targets for effective TB control
are 70 percent for early detection and 85 percent for successful
treatment. Uganda continues to lag behind the set targets, with
only 49 percent of the expected new cases detected and only
73 percent successfully treated in the last year. The WHO urged
the health ministry to declare TB a public health emergency and
allocate sufficient resources to control the disease. However,
limited resources at the disposal of the health sector, especially
laboratory personnel, limited knowledge about TB and
misconceptions about the disease, and HIV/AIDS have been the
main impediments to TB control efforts.
Health experts say combining TB and HIV testing and treatment
could save the lives of up to 500,000 HIV positive Africans a
year. Of an estimated 25 million Africans living with HIV, up to
four million will develop TB during their lives. But the WHO and
UNAids warn national TB programs are only treating half of HIV
positive patients with active TB. The bottom line is that in Africa
we cannot talk acutely about battling the AIDS epidemic while
ignoring TB. (Nuria Siraj)
The President’s Emergency
Plan for AIDS Relief (PEPFAR)
An Update
Before Congress adjourned for the August recess, it began
deliberation on the reauthorization of the President’s Emergency
Plan for AIDS Relief (PEPFAR). Commonly referred to as
“PEPFAR II”, Congressional staff on the House Foreign Affairs
Committee and the Senate Foreign Relations Committee have
begun meeting with key organizations a part of the Global AIDS
Roundtable with the purpose of resolving issues and gaps
pertaining to PEPFAR programming and implementation.
Congress and the global AIDS community are also weighing in
on President Bush’s announcement to allocate $30 billion to
PEPFAR over the next five years. Initially authorized in 2003
and implemented in 2004, the United States Leadership Against
HIV/AIDS, Tuberculosis, and Malaria Act of 2003 was a 5-year,
$15 billion commitment through 2008.
In July, the U.S. global AIDS community compiled a summary of
recommendations that emanated from the work of the Global
AIDS Roundtable’s (GAR) working groups in the interest of
furthering the work of PEPFAR as it is reauthorized. Members
of GAR and Chairs of the working groups have been meeting
not only with key health staffers, but also the Office of the Global
AIDS Coordinator to discuss inclusion of these
recommendations in PEPFAR reauthorization. One of the
recommendations to come out of the GAR working group on
prevention is to strike the abstinence-until-marriage earmark.
The earmark specifies that 33% (one-third) of prevention funds
target abstinence only programs. Despite overwhelming
evidence from studies conducted by the Institutes of Medicine
and others that abstinence only programs do not work without
the inclusion of other prevention mechanisms, the
Administration has been reluctant, and indeed resistant, to
removing this earmark. In fact, on the eve of the August recess,
Senator Richard Lugar (R-IN), ranking member of the Foreign
Relations Committee, introduced a bill on the floor of the Senate,
the “HIV/AIDS Assistance Reauthorization Act of 2007”, which
calls for “not less than 50 percent of the amounts
appropriated pursuant to the authorization of
appropriations…, shall be dedicated to abstinence and
fidelity as components of a comprehensive approach
including abstinence, fidelity, and the correct and consistent
use of condoms, consistent with other provisions of law and
epidemiology of HIV infection in a given country.” The “Lugar
Bill” does not take into consideration any of the
recommendations put forth by the global AIDS community
and, fortunately, did not come up for a vote before the
congressional recess. The global AIDS community will
continue on its original path to PEPFAR reauthorization by
continuing to discuss much-needed changes in this
important legislation with Congress and the Administration,
while also tracking the progress of the Lugar bill in this
congressional session. (James Sykes)
References:
- Thomas Library of Congress, www.thomas.gov, HIV/AIDS
Assistance Reauthorization Act of 2007, Senate Bill No. not
assigned.
- The Global AIDS Roundtable (GAR), “Summary of
Recommendations for Reauthorizing The President’s Emergency
Plan For AIDS Relief (PEPFAR), July, 2007.
UFAN Report
United Faith Action Network
UC Studies HIV Patients
Religious Support,
Alienation Scrutinized
Todd Wentz always has been spiritual. He reads the Bible,
follows the New Testament and credits his beliefs for helping
him recover from a T-cell count of 0 in 2003. But after feeling
alienated at a Protestant congregation and unfulfilled at a
nondenominational church, the 45-year-old Dayton, Ohio,
man doesn't attend any organized service or identify with a
particular religion.
"I was raised in a pretty spiritual family, especially with my
grandmother," says Wentz, who tested positive for the
human immunodeficiency virus (HIV) 20 years ago. "I'm very
traditional. That's what I prefer. But with being homosexual
and HIV (positive), (organized religion) is a quagmire." In a
study published in December by the University of Cincinnati's
Institute for the Study of Health, about 80 percent of HIV
patients surveyed indicated a specific religious preference,
yet 24 percent said they felt alienated in their religious
community, 60 percent didn't feel welcome and 10 percent
had left their church because of their diagnosis.
"HIV is interesting in that there are mostly benefits (resulting
from) spirituality and religion," says Dr. Joel Tsevat, a
principal researcher in the study. (continued on page 16)
15
Stigma of People Who are Homeless,
Have HIV/AIDS, and are Mentally Ill
(continued from page 15)
"On the other hand, with a disease like HIV, there are situations
in which religion can make things worse, with the stigma of HIV,
and patients believing HIV is a punishment from God or that
they don't have to take their medications and God will heal
them."
Tsevat and co-researcher Dr. Magdalena Szaflarski want to
know what places of worship are doing to support - or alienate
- those with HIV. They are conducting a two-year study funded
by the National Institutes of Health, that includes interviews with
60 HIV patients - including Wentz - from the University of
Cincinnati's Infectious Disease Clinic, and clergy from 150
churches in Greater Cincinnati and Northern Kentucky.
Determining how to provide HIV support and education, which
can sometimes contradict religious doctrine, can present a
dilemma for religious groups, clergy and AIDS educators say.
"We (often) don't know how to take that balance, to be honest
and still be pleasing to God," says James Muhammad, minister
with the Nation of Islam, Mosque 5, in North Avondale. The
UC researchers hope to identify the practices and behaviors of
religious organizationsthat encourage education and
acceptance.
Although the researchers aren't identifying the clergy members
being interviewed, when the study concludes, Tsevat and
Szaflarski plan to create a reference source for HIV patients
that will include religious organizations that offer faith-based
support and education.
RESEARCH NOTES
HIV/AIDS in Perspective
The social determinants of gay men’s health is an emerging
area of study. Personal and social distance resulting from the
policing of gender and identity expectations in the form of
abuse, neglect, stigmatization and discrimination are being
acknowledged and addressed, yet there are barriers seen as
group versus group by race, ethnicity, age,
sexual orientation, geographic location, country of origin,
class/socioeconomic status, spiritual belief system, religious
affiliation, political affiliation, tribe, and other communities.
Mark Reed, an HIV test administrator/educator with 4 Charis,
a faith-based testing organization associated with the Heirs
Covenant Church of Cincinnati, emphasizes that church-based
AIDS prevention and support programs should not put the
focus on how an HIV-positive churchgoer contracted the virus.
"What we've really done is try to educate our pastor (that) if
somebody with HIV comes in, don't ask questions," says Reed,
who tested positive for HIV 14 years ago.
Not in our ____ can be filled in with family, workplace, state, or
other areas of exclusion, and whether tolerance or equality
should be the mechanism for overcoming this belief is a major
source of debate. Equality is connected to a larger narrative
where comparison is welcomed and not a threat to integrity;
tolerance is an accommodation where separatism can certainly
remain. Used as means to an end or end to a means (also
called processes and outcomes), these approaches are
grounded in the context of what is seen as achievable. For
HIV/AIDS, the bars of equality need raising.
The Rev. Damon Lynch Jr., senior pastor of New Jerusalem
Baptist Church in Carthage, remembers when, in the late
1980s, churchgoers asked if the pews could be cleaned after
he conducted one of the first local funerals for someone who
died of AIDS-related causes. "Now, the accepted norm is to try
to deal with this, and education is always the key to any type
of stigma or stereotype," Lynch says.
HIV/AIDS as a disease that infects and affects gay men is both
a reality and source of prejudice where self-identity meets
designation (being part of a “high risk group” is not exactly
empowering). The reality of “it is among us” is a tension
communities across the globe are confronting as the disease
spreads, and the belief that it only belongs (or worse yet, should
belong) to certain people contributes to marginalization.
Today, he preaches the importance of using condoms. AIDS
educators say they follow a pastor's lead when determining the
topics to discuss with congregants. Unless requested by the
pastor, "we don't promote condom use, we promote health,"
says Cheryl Hutchins, an outreach coordinator with Stop AIDS.
"It's not skirting the issue, it's respecting the house. I leave it to
them." (Amy Howell, Cincinnati.com/Enquirer.com)
There is enormous variability within all gay men just as any
other group, yet this realization is unfortunately left out of
comparative arguments when between overshadows within.
Research studies that investigate the barriers for HIV/AIDS
prevention, treatment, and care need to reflect this realization,
and those that do not should be regarded with skepticism – and
calls for future research. (Peter Gamache)
ABOUT ACTIONLINK
ActionLink represents one part of a national news service
launched by The AIDS Institute to inform and educate the
public about HIV and AIDS issues at home and abroad.
ActionLink, news service of The AIDS Institute, is also
comprised of news releases, action alerts and newsflashes
updates that keep the public informed, strengthening the
bonds within the AIDS Community. To subscribe or for
questions please contact: [email protected]
16
Critical research questions include:
• Which groups or voices are not being heard?
• What is the impact of changing social, behavioral,
and cultural dynamics?
• How does HIV/AIDS divide rather than unite?
• How can prevention, treatment, and care outcomes
be improved?
• What are the assumptions underlying barriers for
HIV/AIDS improvement?
AIDS Interferes With
Stem Cells In The Brain
A prominent problem in AIDS is a form of dementia that robs
one's ability to concentrate and perform normal movements.
Scientists at the Burnham Institute for Medical Research
(Burnham) have discovered how HIV/AIDS disrupts the normal
replication of stem cells in the adult brain, preventing new nerve
cells from forming.
Drs. Stuart Lipton, Marcus Kaul, Shu-ichi Okamoto and their
colleagues uncovered a novel molecular mechanism that
inhibits stem cell proliferation and that could possibly be
triggered in other neurodegenerative diseases as well. A
normally functioning adult human brain has the ability to partially
replenish or repair itself through neurogenesis, the proliferation
and development of adult neural progenitor/stem cells (aNPCs)
into new nerve cells. Neurogenesis can take place only within
specific regions of the brain, such as the dentate gyrus of the
hippocampus.
The hippocampus is the brain's central processing unit, critical
to learning and memory. aNPCs differentiate, adapt, and
assimilate into existing neural circuits and mature with guidance
from neurotransmitters, the chemical substances that nerve
cells use to communicate with one another. The brain's
self-renewal through neurogenesis is impaired in AIDS
dementia, Alzheimer's, Huntington's, and other
neurodegenerative diseases, as evidenced by a greatly reduced
number of aNPCs in brain tissue from individuals suffering from
these diseases. The Burnham team focused on the determining
the effect of a protein associated with AIDS, called HIV/gp120,
which plays a key role in the pathogenesis of AIDS dementia.
In initial work with cell cultures in Petri dishes, the researchers
methodically ruled out the possibility that HIV/gp120 would be
inducing the death of stem cells and determined instead that
HIV/gp120 was acting by inhibiting stem cell proliferation. Next,
they confirmed these results in a special mouse strain bred to
express HIV/gp120 in its brain. This mouse model for AIDS
dementia mimics several features of the disease process found
in humans. They observed a significant decrease in the number
of proliferating stem cells in the brains of HIV/gp120-mice
compared with similar tissue from normal, wild-type mice.
HIV/gp120 is known to interact with two receptors, called
chemokine receptors, which are expressed on aNPCs. The
researchers discovered that the same two receptors were
targeted by HIV/gp120 sourced from either mouse or human
brain tissue.
In search of a mechanism behind the finding that HIV/gp120
reduced proliferation of aNPCs, the scientists studied the effect
of the protein on the cell cycle. Cells undergo seasons or cycles,
known as G1, S, G2, and M (for mitosis, or cell division). They
found that cells exposed to HIV/gp120 got stuck in the G1 or
resting phase, and that the cell cycle was arrested.
Cell cycle is studied intensively by cancer researchers who have
delineated certain "checkpoint" pathways that can jam cell
proliferation, one of the key behaviors of cancer. Checkpoint
pathways are overcome by cancers when they fool the body's
normal machinery into producing more cancerous cells.
With dementia, it turns out that the opposite is true: the
Burnham team discovered that HIV/AIDS could co-opt the
checkpoint pathway to prevent stem cells in the brain from
dividing and multiplying.
One such checkpoint pathway is modulated by an enzyme
called p38 mitogen-activated protein kinase (MAPK), whose
activity is known to disrupt the cell cycle. In mature nerve
cells, the Burnham team had previously shown that
HIV/gp120 activates the p38 MAPK pathway to contribute to
cell death. Lipton and colleagues now report that the p38
MAPK pathway is also the mechanism underlying decreased
stem cell proliferation in the brain associated with HIV/AIDS.
Under experimental conditions, they were able to neutralize
the p38 MAPK pathway and restore stem cell proliferation.
"We show for the first time how HIV/AIDS inhibits proliferation
of neural stem cells and prevents the formation of new nerve
cells in the adult brain," said Dr. Stuart Lipton, Director of
Burnham's Del E. Webb Center for Neuroscience, Aging, and
Stem Cell Research.
"The fact that the mechanism of action involves the p38
MAPK enzyme is fortuitous because drugs to combat that
pathway are being tested for other diseases. If they prove
effective, they might also work to protect the brain. Thus, this
study offers real hope for combating the bad effects of
HIV/AIDS on stem cells in the brain." Lipton went on to state,
"It will be important to see if HIV/AIDS acts similarly on stem
cells for other organs in the human body, as this may impact
on the disease process as a whole."
These findings were made available to medical researchers
through priority publication online by the journal Cell Stem
Cell. Stuart A. Lipton, M.D., Ph.D. is a practicing neurologist
who has worked with HIV/AIDS dementia patients since the
identification of the disease in the 1980's.
Along with Lipton, Marcus Kaul, Ph.D., and Shu-ichi
Okamoto, M.D., Ph.D. are co-corresponding authors on this
paper. Kaul is an Assistant Professor and Okamoto a
Research Assistant Professor at Burnham.
This research was supported by grants from the National
Institutes of Health. (Science Daily: This story has been
adapted from a news release issued by Burnham Institute.)
17
EDUCATION REPORT
Medical Marijuana
The purpose of medical marijuana is to treat patients with
serious illnesses such as HIV/AIDS, glaucoma, nausea,
migraines, cancer, multiple sclerosis, epilepsy, and chronic
pain. According to the Institute of Medicine (2007), “nausea,
appetite loss, pain and anxiety…all can be mitigated by
marijuana” (Drug Policy Alliance, 2006). Currently, twelve out
of fifty states (24%) have enacted laws that legalize medical
marijuana, which clearly demonstrates the need for increased
public education and awareness.
The states that have enacted laws that legalize medical
marijuana include: California (1996), Washington (1998),
Alaska (1999), Oregon (1998), Maine (1999), Colorado
(2000), Hawaii (2000), Nevada (2000), Montana (2004),
Vermont (2004) Rhode Island (2006), and New Mexico
(2008). Arizona (1996) and Maryland (2003) are two states
that have passed laws favorable towards medical marijuana,
but these states have not legalized its use. Among the states
that have legalized medical marijuana are California and
Washington. According to Medical Marijuana ProCon (2007),
California and Washington state laws for medical marijuana
“remove state-level criminal penalties on the use, possession,
and cultivation of marijuana by patients who possess a
“written or oral recommendation” from their physician that he
or she “would benefit from medical marijuana.” While
California Senate Bill 420 mandates the “California
Department of State Health Services to establish a voluntary
medicinal marijuana patient registry, and issue identification
cards to qualified patients”, the state of Washington Ballot
Measure 692 does not establish a state-run patient registry
(Medical Marijuana ProCon, 2007). Washington also
mandates that patients and/or their primary caregivers
“possess or cultivate no more than a 60-day supply of
marijuana” (Medical Marijuana ProCon, 2007).
Most recently, Rhode Island and New Mexico enacted laws
that support the usage of medical marijuana. In comparison
to California, Rhode Island Senate Bill 0710 establishes a
“mandatory, confidential state-run registry that issues
identification cards to qualifying patients who register with the
state. Rhode Island residents must provide certification from
a Rhode Island physician.” (Medical Marijuana ProCon,
2007). This bill also mandates a limit of the amount of
marijuana that can be possessed and a patient can only grow
up 12 marijuana plants or 2.5 ounces of cultivated marijuana.
The state of New Mexico approved the Senate Bill 523 also
known as “The Lynn and Erin Compassionate Use Act” on
March 13, 2007 and was made effective July 1, 2007.
18
This bill mandates that the “cannabis growers will be licensed
by the New Mexico Department of Health. The Health
Department will distribute the marijuana to qualified patients.”
Currently, ten states plus the District of Columbia have
“symbolic medical marijuana laws (laws that support medical
marijuana, but do not provide patients with legal protection
under state law)” (Drug Policy Alliance, 2006).
Public education about medical marijuana is critical.
According to the Americans for Medical Rights (2001), “every
medical marijuana initiative ever placed before voters has
succeeded, with between 54% to 65% voting in favor” (Drug
Policy Alliance, 2006). In addition, “every major scientific poll
of public opinion on medical marijuana has shown
overwhelming public support for patients’ rights to use
marijuana as medicine, and for doctors’ rights to recommend
or prescribe it” (Drug Policy Alliance, 2006). These findings
clearly demonstrate that we are moving in a direction that will
continue to emphasize the need for increased education
about the usage, need, and effects of medical marijuana.
(Sierra Johnson and Michelle Scavnicky)
For more information about medical marijuana, please visit
drugpolicy.org.
References:
http://www.drugpolicy.org/docUploads/AMR_votespolls_101802_1
31220.pdf
http://www.medicalmarijuanaprocon.org/pop/StatePrograms.htm
http://www.drugpolicy.org/marijuana/medical/
WOMEN INFORMING NOW
(WIN) UPDATE
The AIDS Institute hosted the first of an ongoing series of
HIV/AIDS Women’s Health Summits August 25th 2007, in
Hollywood, FL. The Summit’s are targeted to Physicians,
Nurses and other health care providers who treat patients,
specifically women with HIV/AIDS. The objectives of the
program are to understand the specific treatment and care
needs of women with HIV/AIDS, examine treatment
adherence and identify HIV/AIDS treatment and care barriers
of women, review the Department of Health and Human
Service (DHHS) Guidelines and Understand the Perinatal
Guidelines as well as specific needs of women and HIV/AIDS.
Twenty-five individuals representing health care professions
treating women and HIV were in attendance. Presenters
included: Ana Puga, MD, who provided a Women & HIV
Overview and Review of Perinatal Guidelines, Adolfo
Gonzalez-Garcia, MD who presented on Gynecological
Complications in the HIV Population, Lourdes Illa, MD, who
presented on Mental Illness & HIV and Marie Hayes, MSW
who presented Barriers to Care for women with HIV.
The program was planned and implemented in accordance
with the Essential Areas and Policies of the Accreditation
Council for Continuing Medical Education (ACCME) through
the joint sponsorship of the University of South Florida College
of Medicine and The AIDS Institute. The programs are
supported through an unrestricted education grant from
Abbott Laboratories and will be replicated in Florida and
Alabama. (Michelle Scavnicky)
THE AIDS INSTITUTE
IN THE NEWS
WIN Project Team Update
The AIDS Institute is pleased to announce that Michelle
Scavnicky, Director of Education, Suzanne Miller, Public
Policy Associate, and Peter Gamache, Director of Research
will be spearheading The WIN Project. Michelle will focus on
the education component of the project and can be reached
at [email protected]. The policy component
will be Suzanne’s primary focus and she can be contacted at
[email protected]. For the research component of
WIN, please contact Peter Gamache at:
[email protected].
The WIN Partner Network conference call is scheduled for
September 11, 2007 at 1:00 PM to discuss upcoming events
related to the project. All partners are invited to participate.
For more information, please contact Michelle Scavnicky.
Special thanks to Jamila Taylor for her contributions to the
WIN Project while she was with The AIDS Institue and we wish
her much success with her new opportunity.
Carl Schmid participated as a policy analyst at the August
25th plenary session at NAPWA’s Staying Alive conference in
Cleveland, Ohio. The session, “Creating New Ryan White
Comprehensive HIV/AIDS Care and Treatment Legislation”
discussed principles, developed by people living with
HIV/AIDS, to guide Congress in its future consideration of
Ryan White HIV/AIDS legislation.
Despite finding myself suffocated under facts and figures,
angered by situations, and saddened by inevitable
consequences, I will take a great deal away with me from this
internship. I find the current situation of politics tends to focus on
ignoring feasible solutions to preventable problems. This view
has fueled my desire even more to find competence in politics,
to see and evaluate both sides of the situation, while not
pandering to my own biases. My overall goal for these efforts
would be to find a solution, not a plea-bargain and not a cop-out,
but an adequate evaluation of what we face, what people need,
domestically and globally, and how we can tackle issues and
bring about solutions.
Currently, my future seems like a gaping rabbit hole. Through
my schooling and my internship opportunities, I’m slowly
grasping how I want to shape my future. I plan to enlist in the
United States Air Force, and serve as a corpsman until I attend
law school and perhaps serve as a Judge Advocate General.
For a long time, I have wanted to serve in the armed services. I
feel that my personality and my capabilities can be put to so
many uses, with the potential to change myself and those around
me for the better. Graduate school, hopefully focusing in
International Economics, is also a future plan of mine. I would
ideally like to serve in public office, President of the United States
or some equivalent position. I hope to bring adequate solutions
to the issues that plague our nation and the world- a light task,
I know, but one that someone needs to attempt in earnest. World
Peace and finding an actual function for the penny will be my
first actions. But in all seriousness, which a college senior is
inevitably running from, I have found that there is so little I know
about this great vat of issues that makes up advocacy and policy
and how our world really works. Although the AIDS Institute has
taken away some of that void, I hope that what I have learned
through my internship and from the people I’ve encountered will
stick with me and motivate my continual education. (Jessica
Retka)
Jessica Retka, My Life as an Intern
Although I try to sound sophisticated at every given
opportunity, I’m going to temporarily abandon that effort. My
internship experience with the AIDS Institute in Washington,
D.C. was very eye-opening. Initially, I applied for this position
because the subject matter intrigued me, it fit the criteria for
a fellowship (which unfortunately I ended up not receiving),
and because it was a subject matter and a work environment
with which I had absolutely no experience.
A kaleidoscope of emotions followed me through this
internship. Last summer, I was a Congressional intern and I
was introduced to the unique opportunities Washington, D.C.
provides. This introduction helped me to realize that I was a
“lifer”- one who has to be involved with, and can’t pull
themselves away from, that lifestyle of “the Hill.” It was a
unique experience and one which I felt honored to acquire.
But that’s one side of “the Hill,” I wanted the other side. When
I saw the people who came to our office to educate lawmakers
on issues, the same ones which shape our policies and our
lives, I found their attempts to swing votes and represent the
best interests of those who can’t speak for themselves
intriguing. I wanted participate in both arenas. The AIDS
Institute gave me exactly what I desired. I was still involved
with “the Hill,” attending hearings, mark-ups, meetings, etc.
But I found that knowledge saturated my internship
environment on issues, politics, and people even away from
the Congressional proceedings.
www.lgbthealth.net
The National Coalition for LGBT Health Goals and Objectives has been
organized around five areas: research; policy; programs and services;
professional and cultural competency and the diversity of the national
LGBT community. The following statements represent long-range goals
for the LGBT community. The goals are not mutually exclusive, but
rather purposefully interrelated. Taken together, achievement of the
goals -and their related objectives - will help to ensure equity in health
status and participation in the decision-making process for individual
members of the LGBT population and representative organizations.
• To increase knowledge regarding LGBT populations' health status, access to
and utilization of health care, and other health-related information.
• To increase LGBT participation in the formation of public and private sector
policy regarding health and related issues.
• To increase availability of, access to, and quality of physical, mental, and
behavioral health and related services for the LGBT population.
• To increase professional and cultural competencies of providers and others
engaged in health and social service delivery to the LGBT population.
• To eliminate disparities in health outcomes of LGBT populations and the
community including differences that occur by gender, race/ethnicity, education
or income, disability, nationality, geographic location, age, sexual orientation,
gender identity or presentation.
19
Board Member of the Month
STATE ROUNDUP
CALIFORNIA
Budget Includes First-Ever Funds
for LGBT-Specific Services
WILLIAM J. SCHUYLER
William J. Schuyler joined the board of directors of The AIDS
Institute in the spring of 2004. He brings a wealth of experience
and passion to the board. His experience is further supported
in his work, currently the Vice President of Federal Government
Relations, Trade for GlaxoSmithKline.
William’s
responsibilities include lobbying Congress and the
Administration on issues related to international trade and
intellectual property agreements, support of the Ryan White
CARE Act, the Medicare drug benefit, as well as protecting
domestic intellectual-property rights and other initiatives in
support of GSK products.
Previously William worked as a Legislative Fellow in the Office
of Senator Dave Durenberger and as a Senior Evaluator for the
U.S. General Accounting Office. In these roles, he focused on
health care reform and proposals to increase access to health
care that were debated in Congress.
William holds a Master of Arts in Public Policy Studies from
Duke University and a Bachelor of Arts in Economics from the
University of Washington.
We Want To Hear From You!
Let us know what you think about ActionLink
Journal. The AIDS Institute is here for you!
Is there a topic you want to see?
Article to suggest?
Just want to share your opinions on the journal?
Please email us at [email protected]
with your comments and your thoughts will be sent
directly to our editors.
Thank you!
20
EQCA, LGBT Caucus Members and Community Advocates
Help Secure $300,000 for LGBT Victims of Domestic Violence
SACRAMENTO – For the first time, California’s budget includes
funding for programs that specifically serve the lesbian, gay,
bisexual and transgender (LGBT) community. The state’s new
2007-2008 budget, which Gov. Arnold Schwarzenegger signed
on Friday, includes $300,000 earmarked to aid LGBT victims of
domestic violence.
To secure funding, Equality California worked closely with
community advocates and LGBT Legislative Caucus Chair
Assemblymember John Laird, D-Santa Cruz, who played an
instrumental role as chair of the Assembly Budget Committee,
as well as Sen. Carole Migden, D-San Francisco. The $300,000
will help sustain existing domestic violence services and
expand programs for the LGBT community.
“These types of government and non-profit partnerships have
for years kept many Californians healthy, safe and
self-sufficient, and for the first time the California budget
includes such funds for LGBT-specific services,” said EQCA
Executive Director Geoff Kors. “LGBT-specific domestic
violence programs provide a critical service to the community
and Equality California will continue to advocate and secure
state budget funding for other types of services in the years
ahead. We are truly appreciative of Gov. Schwarzenegger and
the Legislature for including this critical funding for LGBT
Californians.”
The new funds are allocated to the Equality in Prevention and
Services for Domestic Abuse Fund, administered by the Office
of Emergency Services. The Fund was established last year
through legislation authored by former Assemblymember
Rebecca Cohn, D-Saratoga, and sponsored by EQCA with
support from the Los Angeles and San Diego Gay and Lesbian
Centers and Community United Against Violence. The fund
offers grants to organizations that provide domestic violence
services for LGBT clients. (Equality California, Ali Bay)
PUERTO RICO
Where Is the Silver Lining
in Puerto Rico?
Puerto Rico has the fifth-highest concentration of AIDS in the
United States and its territories - a concentration that nearly
double the national AIDS rate. Although this statistic may be
alarming, the incomplete attempt at providing adequate care and
treatment to the island's 12,000 AIDS patients is outright
shocking.
A majority of H.I.V. and AIDS patients are covered by the Puerto
Rican version of Medicaid, known as Health Reform. The
patchwork program does not cover some critical drugs. Federal
aid to the island’s Medicaid program is capped at $240 million,
which is only 13 percent of the program's overall budget. Poor
states in the U.S. receive up to 75 percent of their Medicaid
money from federal government.
Under the Ryan White Care Act, Puerto Rico received to $53
million last year to help fill in gaps in care and treatment.
However, due to disorganization the island has often failed to
spend all its Ryan White aid, losing access to $6.5 million over
the last five years.
Cash shortages or errors in drug distribution by the
commonwealth Health Department mean that patients
sometimes receive five days’ doses at a time or two antiretroviral
instead of the prescribed three, a practice that can do more harm
than good. A local group, AIDS Patients for a Sane Policy,
conducted a survey of clinics in Puerto Rico and found 477
patients waiting to start therapy or to make necessary changes
in their drug regimens.
These gaps in treatment can hasten the development of
resistance to the life prolonging cocktails. Local doctors also say
that when they need to switch an ailing patient to a new regimen,
approval from the central health department can take months
and that the latest and most effective drugs are often not
available.
The Health Resources and Services Administration (HRSA),
citing problems in administration, patient access, and
community participation, put the San Juan government on
“restricted drawdown” status in 2005 and did the same for the
commonwealth in 2006. Thus, health agencies have to submit
all grant vouchers to Washington for approval before money is
disbursed.
In December the F.B.I. raided four San Juan Health Department
offices, seizing 400 boxes of documents in a criminal
investigation into possible misuse of Ryan White Title I grants.
In 2006, the city received $13 million for its use and for 30 nearby
municipalities. HRSA cut back funding until Puerto Rico
complied with its regulations.
In July 2007 Governor Acevedo Vila announced the overhaul of
the HIV/AIDS program, including $78 million to streamline the
treatment program. He also appointed HIV + Jorge Delgado
Rivas to be Assistant to Secretary of Health.
Delgado, a Puerto Rican native has a Ph.D. in administration.
He is the first Puerto Rican government official expressly
charged with overseeing the territory's response to its
HIV/AIDS crisis; although, his only AIDS-related experience
has been volunteering at a handful of AIDS service groups.
Many advocates hopped that Delgado’s appointment would
bring an end to the insanity in bureaucratic administration of
HIV/AIDS programs. However, there are uncertainties as to
how effective he can be at reforming the system from within.
Furthermore, his influence over San Juan city officials that
administer the Title I grants, namely Mayor Jorge A. Santini
Padilla, is somewhat limited.
Delgado does acknowledge that there is a "crisis" in Puerto
Rico, but denies that there is a waiting list for medication
under Title II’s AIDS Assistance Drug Program. "There is no
ADAP waiting list," Delgado said. "At one point we had a
waiting list in February and March but $8 million dollars were
allocated. That list does not exist anymore." This claim is
difficult to confirm or deny due to the territory’s shabby record
keeping.
Delgado wants to computerize health records—a tall order
given other infrastructure issues on the island. The fact of
the matter is that Puerto Rico's infrastructure still needs to be
modernized to fit the Health Resources and Services
Administration's standards and adequately disperse funds.
According to the National Association of State & Territorial
AIDS Directors' August 16 ADAP Watch "Puerto Rico
reported being uncertain about future cost containment
measures, including waiting lists, based on actions that the
Puerto Rico Department of Health is currently taking."
Another reform that Delgado is hopping to undertake is to
create a phone line for patients to call if they can't get their
meds. "It's especially for addressing the waiting list, since
some people say there is one, and some say there's not," he
said. (Jason Kennedy)
FLORIDA
Hastings Hosts HIV/AIDS Forum
For the past 15 years HIV and AIDS have been the leading
cause of death among African Americans between ages 25
and 44, and blacks are affected by the disease seven times
more than whites, according to Thomas Liberti, chief of the
Florida Bureau of HIV/AIDS & Hepatitis.
These alarming statistics prompted U.S. Rep. Alcee Hastings
to host an HIV and AIDS forum July 28 at the
African-American Research Library and Cultural Center,
where Liberti also spoke. “This state has become a nesting
ground for this disease,” Hastings told the crowd Local
politicians in attendance included Fort Lauderdale Mayor Jim
Naugle, Fort Lauderdale Commissioner Christine Teel and
Oakland Park Mayor Larry Gierer.
Hastings informed participants about the raging debate
among politicians over whether to reduce funds for programs
that provide care for HIV/AIDS infected individuals.
(continued on page 22)
21
(continued from page 21)
Another concern is the number of ex-convicts who are
spreading HIV/AIDS within the community after getting
infected in jail. The goal is to provide voluntary testing before
releasing inmates, he said. The group received compelling
testimony from Felicia White, 42, a guest speaker who has
been HIV-positive for 17 years.
She recounted her feeling of deep depression upon getting
the results of the HIV test as an expectant mother. Although
she could not see how to overcome this challenge, she knew
she had to for the sake of her child.
“It wasn’t just about me. I had a responsibility. I was a mom,”
White said.
The Rev. Rosalind Osgood, a forum speaker and member of
the clergy at the New Mount Olive Baptist Church in Fort
Lauderdale, challenged those of faith to refrain from hypocrisy
and discuss the disease, which infects people in churches
today. Osgood described the programs offered at Mount Olive
for those who are HIV positive, including those geared to
promoting home ownership.The church has even extended
its benevolence to those who are living with the disease in
Kenya. At 88, Miriam Schuler is an advocate of getting tested.
She was the voice for senior citizens at the forum. For ten
years, she has been a volunteer at the Health Department
helping with the Senior HIV Intervention Program (SHIP).
“I think testing is so important,” Schuler said. At the Health
Department, Schuler passes out condoms to senior citizens.
Hastings said he expects the community to marshal its
resources effectively to combat the spread of HIV and AIDS.
(Jessica Lamar, Broward Times)
MONTANA
State Official Says Change in
HIV/AIDS Registry Working
BOZEMAN - It's been nearly a year since state health officials,
under a federal mandate, began keeping data on HIV and
AIDS patients by name, rather than assigning a code number;
but the privacy of patients continues to be preserved, a state
official said.
Montana had an elaborate system to shield the identities of
the nearly 500 HIV and AIDS patients in the state, but the
Centers for Disease Control and Prevention in Atlanta ordered
states to begin tracking HIV and AIDS patients by name by
the end of 2007, or risk losing federal funds.
Montana has always kept records of the names of HIV and
AIDS patients, but prior to September 2006, it assigned
everyone a code number, said Laurie Kops, section
supervisor of the state's HIV prevention and surveillance
division.
22
But the code system, also used in other states, proved to be
an unreliable way to track cases, and it skewed national data
kept by the CDC. "There has been a lot of duplication in the
numbers," Kops told the Bozeman Daily Chronicle. So, the
CDC last year required that states drop or modify the code
system in favor of one that tracks individuals by name and
other data. Failure to comply could have meant the loss of a
significant chunk of the $2.1 million in federal funds for
HIV/AIDS programs in Montana. "In trying to make sure we
report the true numbers of cases, this is one of the best ways
to accomplish that," Kops said. She stressed that patients'
names and personal data are never given to the CDC, only
summary data on the number of cases. "When there is a
report to CDC, it's only by the numbers, and not by name,"
Kops said. "That seems to be people's greatest fear, that their
information will be released by name. But it's always been by
the number, and always will be by the number."
While the shift to name-based tracking might have caused
quite a stir 10 years ago, it seems to have caused few ripples.
"A lot of preparation work and education was done up front,"
Kops said. "We worked with a lot of groups who initially had
concerns, but the bottom line was this had to be done or we
would lose our funding." (billingsgazette.net)
TEXAS
HIV/AIDS Organizations Along the
Border May Apply for Funding
HIV/AIDS service organizations in El Paso, Juarez and
Southern New Mexico may apply for funding from the Border
AIDS Partnership, a community partner of the National AIDS
Fund in conjunction with the Elton John AIDS Foundation.
Candidates applying must be nonprofit organizations that
provide HIV/AIDS education and prevention in El Paso,
Juarez and Southern New Mexico. Completed application are
due Friday, October 19th at 5 p.m. Applications may be picked
up at El Paso Community Foundation located at 310 N. Mesa,
10th floor, between 8:30 a.m. and 5:00 p.m. Monday through
Friday. Grant awards will be announced in December.
This year, the Partnership distributed $133,000 to 10
programs. These programs have assisted over 40,000
people, primarily youth and young adults as well as men and
women in our region. Since 1996, the Partnership has
distributed more than $1 million to support innovative HIV
prevention programs in our area. The funds support programs
including the Young People's Project -- targeting 16 to 21 year
olds to help prevent behaviors that put them at risk of HIV
infection and other sexually transmitted diseases; and
Women United in Action Against AIDS -- a community-based
peer education program targeting women with limited access
to HIV screening and other health services. Major funders
include the El Paso Community Foundation, the Hunt Family
Foundation, MAC AIDS Fund, the Burkitt Foundation, the
Stern Foundation, the Hoy-Fox Automotive Group and the
Bank of America. For every two dollars raised locally, the
Border AIDS Partnership gets a one-dollar match from the
National AIDS Fund through the Elton John AIDS
Foundation.and then distributed to local HIV/AIDS education
and prevention programs. (www.elpasotimes.com)
MISSOURI
HIV/AIDS Housing Planned
A local organization that helps people with AIDS/HIV is
preparing to break ground this fall on a new housing project
for people living with the disease in Columbia.
RAIN of Central Missouri has secured $1.2 million for the
Waterbrook Place Housing Project, which will include two
duplexes and one four-plex near Garth Avenue and Worley
Street, Executive Director Mindy Mulkey said.
"What we have found is people with long-term illnesses
usually have other challenges, such as low income and
problems attaining employment that can pay for their housing
and medication and all the other needs that they have,"
Mulkey said. "Stable, quality housing is one of the best ways
to improve long-term health outcomes."
In February, RAIN opened its first four-plex for AIDS/HIV
patients on Stone Street. The Waterbrook project will double
the number of units available.
RAIN is a not-for-profit social service agency that provides
support and resources for individuals and families affected by
or infected with sexually transmitted diseases, including HIV
disease.
A 2002 needs assessment conducted by RAIN showed a link
between HIV/AIDS and homelessness. Mulkey said the
assessment also found that many people living with HIV
disease relocate to Columbia because of the medical and
support services available here, creating even more demand
for safe, affordable housing.
"We have been working on this issue for the last four years,"
Mulkey said, adding that in 2003, RAIN established a formal
housing program that provides rent and utility assistance.
Betsy Smith, HIV prevention planner with the
Columbia/Boone County Health Department, said that
between 1982 and December 2006, 193 residents of Boone
County had been diagnosed with HIV disease. That number
does not include the number of people who might have moved
to the county after they were diagnosed.
Mulkey estimated that between 300 and 400 people with HIV
disease are living in the county.
In December, RAIN was awarded a $100,000 grant through
the Missouri Housing Trust Fund. Additional funding for the
Waterbrook project includes an $87,000 Community
Development Block Grant through the City of Columbia,
$135,000 from the Federal Home Loan Bank of Des Moines
and more than $900,000 in rental assistance from the U.S.
Department of Housing and Urban Development.
The project will be completed in about a year.
Mulkey said rent for the new units will be based on federal
housing guidelines.
DISTRICT OF COLUMBIA
Mayor Makes Choice
To Run AIDS Agency
Mayor Adrian M. Fenty (D) is expected to announce today that
he is appointing a public health physician who has worked with
HIV-infected people in several countries to lead the District's
HIV/AIDS Administration.
Fenty's choice, Shannon Lee Hader, is an epidemiologist and
public health physician who has directed the U.S. AIDS program
in Zimbabwe. She has worked with HIV-infected children and
adults in Africa, South America and the Caribbean.
If confirmed by the D.C. Council, Hader will be the third director
in as many years for the agency. The position has been open
since January, when Fenty chose not to keep Marsha Martin.
The District's Health Department director, Gregg A. Pane,
announced that he intended to reorganize the office and then
named himself interim director.
Hader, who received her medical degree from Columbia
University and trained in internal medicine and pediatrics at
Duke University Medical School, joined the U.S. Centers for
Disease Control and Prevention in 2001 as an epidemic
intelligence service officer.
More recently, she directed the CDC's Zimbabwe Global AIDS
Program. She also has served as an adjunct clinical faculty
member at Emory University School of Medicine in Atlanta.
"We're very excited that Dr. Hader is joining our team," said Leila
Abrar, a spokeswoman for the D.C. Department of Health. "Dr.
Hader is an outstanding clinician and researcher with a wealth
of national and international front-line experience in the fight
against this epidemic."
Fenty has called HIV/AIDS the top public health priority of his
administration. Under a campaign launched last summer, the
city wants all residents between 14 and 84 to be tested to find
out their HIV status. About 48,000 people were screened in
2006, a 75 percent increase over the previous year, but the
campaign has fallen well short of its goal.
Fenty is scheduled to make his announcement at 10 a.m. at the
Congress Heights Clinic, 3720 Martin Luther King Blvd. SE. (By
Joe Holley, Washington Post Staff Writer)
Submit your stories to State Round-Up
by sending them to:
[email protected]
Please include your name and contact information.
Tenants will pay 30 percent of their income toward rent, and
HUD will subsidize the rest. (www.columbiatribune.com)
23
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