Living with HIV

Living with HIV
DVD
INSIDE
featuring
John J. Duran, Mayor
West Hollywood, California
Living with HIV
Contents
Introduction ......................................................4
What Exactly Is HIV?..........................................6
How Is HIV Different from AIDS?........................7
I’m HIV-Positive…What Do I Do Now?...............9
Learn About Testing.........................................12
What Are the Symptoms of HIV and AIDS?......14
Should I Take HIV Medicines?..........................16
What Treatment is Right for Me?......................17
Types of HIV Medicines . .................................18
Stick With It! ...................................................19
Take Charge of Your Health..............................20
Copyright © 2008
Conrad & Associates, LLC
All Rights Reserved
No part of this book may be reproduced or transmitted in any form or by any
means, electronic or mechanical, including photocopying or recording, or by
any information storage and retrieval system, without the written permission
of the publisher, except when permitted by law.
Be Responsible About Sex..............................23
Conclusion......................................................24
Resources.......................................................25
Manufactured in the United States of America
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Living with HIV
Living with HIV
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Introduction
This program will give you vital information that will help
you plan a course of action. By learning about HIV and
the ways it can be managed, you will reduce your fear
and feel more in control. Whether you just found out
today that you have HIV or you’ve known for years,
Learning that you have HIV can be scary and
confusing. What does it mean? Who should you
tell? What does the future hold? What can you do
to maintain your health and well-being?
this information will lay a foundation for progress.
You’ll learn about HIV and the ways you can make a
difference in your own health. In particular, you’ll learn
about the medicines that are now helping thousands
You will get answers to these questions shortly.
of people like you live a longer and better life. The key
But first…take a deep breath! It’s normal to be
is following your doctor’s guidance and, if necessary,
worried and uncertain…and it’s also important to
finding the medicines that are right for you.
keep this in perspective. You have been diagnosed
with a serious medical condition. You now need
time to learn, time to think, and time to weigh your
actions. And most of what you need to learn about
Managing HIV will change your life in some ways. And
it won’t always be easy. But, as you will see, you are
not alone. Life goes on. Your life will go on…and there
is no reason to let HIV stand in your way.
right away is not difficult.
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Living with HIV
Living with HIV
5
What Exactly Is HIV?
How Is HIV Different from AIDS?
HIV stands for Human Immunodeficiency Virus.
AIDS stands for Acquired Immunodeficiency Syndrome.
This means it is a virus that attacks the human immune system,
making it weaker. The virus kills certain cells in your body that
normally fight off infection and disease. If you have the HIV
virus in your body, you are said to be “HIV-positive.” If you do
not have HIV, you are “HIV-negative.”
AIDS is the last stage of HIV infection. You can think of it as the
disease that is caused by HIV. Most people who are HIV-positive
do not have AIDS. This means they have the virus, but they do
not yet have any serious symptoms or illness. The virus is still
“hiding” in their bodies, or it is kept under control with medicines.
More than a million Americans are infected with HIV. But one out
of every four people infected with HIV do not yet know they have
it! That’s because being HIV-positive is like having high blood
pressure—it is a “silent” disease. The virus usually hides in your
body for many years without causing any problems. That is one
reason HIV is so widespread. Because people may not realize
they have it, they can spread it to others unknowingly.
People who have AIDS have fewer helpful immune system cells
than healthy people. In addition, having AIDS means a person is
becoming sicker from one or more serious illnesses that may be
related to a weakened immune system.
But HIV cannot be “caught” like the flu virus. HIV is actually a
very fragile virus. It cannot live long outside the body. You can’t
get HIV by shaking hands or hugging or a casual kiss. It must be
passed directly from one person’s body to another through blood,
semen, or vaginal secretions. The virus is not passed through
saliva or tears.
At one time, if you were HIV-positive you almost always developed
AIDS at some point. And, once AIDS symptoms appeared, most
people died relatively quickly.
Thankfully, that’s no longer true. HIV medicines can now directly
attack the virus and keep people from getting sick. The medicines
can also prevent symptoms from appearing and can control the
severity of AIDS.
Here are the most common ways that HIV is spread:
• Unprotected sex (oral, vaginal or anal sex without a condom) with someone who is HIV-positive
• Sharing a needle and syringe to inject drugs or sharing equipment (“works”) used to prepare drugs for injection
• From an HIV-positive woman to her baby during pregnancy, birth, or through breast milk
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Living with HIV
Most people who are
HIV-positive do not have
AIDS. This means they
have the virus, but they
do not yet have any
serious symptoms or
illness.
Living with HIV
7
I’m HIV-Positive…
What Do I Do Now?
First thing: try to remain calm.
Thousands of people have been through
this experience…and learned that help
is available.
Here are four important steps to take
after you learn you are HIV-positive:
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3
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Living with HIV
Choose a doctor
Get support
Figure out insurance
Think about who to tell
Living with HIV
9
DO
N ow
DO
N ow
Choose a Doctor
Think About Who To Tell
You’ll need to find a doctor with experience
treating patients with HIV. If your current
doctor doesn’t have this experience, ask
to be sent to a doctor who treats HIV
patients or search for one yourself (see
the Resources section at the end of this booklet). The field of
HIV medicine is changing very rapidly. You need a doctor who
specializes in this area and has direct experience caring for
HIV-positive patients.
You should think about who you might want to tell about being
HIV positive and who does not need to know. This can be a
complicated, emotional issue. Go slow in telling others about your
HIV infection beyond those you think should know, such as your
health care professional, spouse, or partner. Seek advice from
your health care professional, patient support groups, and those
around you. And ask about any legal guidelines in your state that
might influence your decisions.
Get Support
Advice, encouragement, and the company of others in your
situation are only a phone call or a computer click away in most
parts of the country. HIV/AIDS organizations are located in most
cities in every state. There are telephone hotlines available 24
hours a day, and chat rooms and discussion forums on the
Internet. Use the resources at the end of this booklet to connect
to others. Talking to people who are HIV-positive, either in person,
on the phone, or via Internet, can make a world of difference.
Figure Out Insurance
If you have health insurance, review
your policy carefully to understand your
coverage. Benefits vary dramatically
between companies and between states.
If you don’t have insurance, contact one
of the organizations at the back of this booklet for advice. There
are ways to obtain medicines even if you do not have insurance.
Seek advice from people who know about insurance issues. HIV
medicines can be expensive, and you want to be as smart as
possible in arranging your insurance coverage.
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Living with HIV
Telling Sexual Partners
Before telling your
partner that you have HIV,
take some time alone to think
about how you want to bring up
the subject.
Decide when and where would be the best time
and place to have a conversation. Choose a time
when you expect that you will both be comfortable,
rested, and as relaxed as possible.
Think about how your partner may react to stressful
situations. If there is a history of violence in your
relationship, consider your safety first and plan the
situation with a trusted friend, case manager, or
counselor.
Living with HIV
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T estin g
• Complete blood count This measures the levels of the different types of cells in your blood, such as red cells (to carry oxygen) and white cells (to fight infection).
• CD4 count HIV zeros in on one type of cell in your immune system: CD4 cells. This test estimates how many CD4 cells you have in your blood. This is a good gauge of your health or of how you are responding to medicines.
• Viral load test This measures the amount of HIV present in your blood, which is called the “load.” This can be a very good way to tell if your medicines are working.
• Drug resistance testing These tests can tell if certain HIV drugs can fight the virus.
• “Tropism” testing These are newer tests, that show whether HIV drugs can actually block the virus from
entering cells.
Learn About Testing
If you are HIV-positive, you may need to have regular blood
• Liver and kidney tests Your liver is a key player in how you respond to medicines, and medicines, in turn, can affect your kidneys. So your doctor or health care professional may order tests to measure how well your kidneys and liver are working.
• A skin test and chest x-ray for tuberculosis
• Blood tests for other infections
tests to monitor your health. Here are the ones that your
physician is likely to order during the initial evaluation and to
track your progress:
• Blood tests for sexually transmitted infections such as syphilis
• Blood tests for hepatitis viruses
• A Pap test for women
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Living with HIV
13
SYMPTOMS
But even if a person feels fine, the virus can multiply and infect
other immune system cells. If the immune system becomes weak
enough, a variety of complications start to appear:
• Large lymph nodes, or swollen glands, that may be enlarged for more than 3 months
• Lack of energy
• Weight loss
• Frequent fevers and sweats, especially at night
What Are the Symptoms of
HIV and AIDS?
• Infections with sexually transmitted illnesses (also known as STDs), for example syphilis, gonorrhea, genital herpes, and chlamydia
Many people will not have any symptoms when they first become
infected with HIV.
• Persistent or frequent yeast infections (in the mouth, throat or They may, however, have a flu-like illness usually 2 to 4 weeks
after exposure to the virus. They may feel unusually tired or have
a fever, headache, or enlarged lymph nodes. These symptoms
usually disappear within a week to a month and are often
mistaken for a cold or flu.
• Skin rashes
During this initial period, people are very infectious. The virus has
multiplied and is present in large quantities in body fluids, such as
blood, semen or vaginal secretions.
• Short-term memory loss
More persistent and severe symptoms of AIDS may not appear
for many years. This period of “silent” infection without symptoms
varies greatly from person to person. It may be as short as a few
months, or possibly more than a decade.
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Living with HIV
in the vagina)
• Pelvic inflammatory disease (infection of the uterus and related female organs) in women that does not respond to treatment
• In patients who are also infected with the herpes virus, frequent, severe and painful outbreaks such as shingles, or sores on the mouth, penis, vagina, or anus
Living with HIV
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What Treatment is Right
for Me?
Should I Take HIV
Medicines?
You do not need to take HIV medicines just because you are
HIV-positive. You and your doctor will decide, based on the
results of your examination and lab tests, the best time to start
treatment. This decision depends on many things, such as your
overall health, the amount of virus in your blood, whether you are
showing symptoms, and the health of your immune system.
In general, you should begin HIV treatment if:
• You are experiencing severe symptoms of HIV infection or have been diagnosed with AIDS
• You have a high viral load
• Your CD4 count is 350 or less (especially if it is 200 or less)
• You are pregnant
The U.S. Department of Health and Human
Services recommends that you take a
combination of three or more medicines
from different classes of HIV drugs. This
combination of medications is called Highly
Active Antiretroviral Therapy (HAART). Using
several different medicines at once “hits” HIV at different places
or at different stages of its life cycle. The drugs may either stop
the virus from reproducing or prevent infection of healthy immune
system cells.
But the HAART guidelines are just that—guides. Your medicine
combination should be tailored to your needs by your doctor.
Factors that you and your doctor may consider in selecting a
treatment combination might include:
• Whether you can tolerate the drugs
• How often, and how many, pills must be taken
• If pills can be taken with or without food
• How the medicines interact with one another
• Other medicines you take
• Other diseases or medical conditions you may have
• Pregnancy
• Your drug resistance testing results
• You have HIV-related kidney disease
• You are being treated for hepatitis B
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Living with HIV
Living with HIV
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Stick With It!
Your success in fighting HIV and remaining healthy depends on
how well you stick to your treatment plan. Follow your doctor’s
advice in all areas! Sticking to your plan means:
• Getting all of your tests done on schedule
• Taking your medicines at the same time Types of HIV Medicines
When AIDS first surfaced in the early 1980s, no drugs existed to
fight the virus. In addition, few treatments existed for the diseases
that occurred with AIDS. Today, many drugs are available to help
people with HIV stay healthy. There are four broad classes of
drugs used to treat HIV infection and the infections that occur due
to AIDS:
• Medicines that attack the virus itself
each day (use timers, alarm clocks, pagers, a 7-day pill box, or a daily activity to remind you when to take your medicines)
• Keeping your medicine in the place where you will take it. You may want to keep backup supplies of your medicine at your workplace or in your briefcase or purse.
• Planning ahead for weekends, holidays, and changes in routine
• Medicines that block the virus from entering the CD4 cell
• Building a support network of family members, friends, • Medicines that fight the infections that occur with AIDS
or coworkers who can remind you to take your medicine or support you in taking your medicine
• Vaccines to prevent infection with other diseases, such as pneumonia, influenza, and hepatitis A and B
• Keeping track of your medicine supply. Contact your doctor or clinic if your supply will not last until your next visit.
With more than 30 different types of HIV medicines available
now, the choice of which combination to take must be made in
consultation with your doctor. The good news is that more and
better drugs continue to be developed.
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Living with HIV
• Always tell your doctor about the medicines, herbs, supplements, vitamins and minerals you are taking, even if you buy them yourself from the pharmacy, health food store, or grocery store.
Living with HIV
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Your Health
Each person travels his or her own road, at their own speed. But
there are things you can do to make the journey easier. And there
are some potential obstacles that you can watch out for. Here
are some tips gathered from the experiences of others who are
HIV-positive:
Share your feelings.
Find at least one person with whom
you can be totally honest and open.
Somebody who can listen to your
deepest feelings, most embarrassing
traits, or worst problems. It may, or
may not, be a spouse or partner. It could be a friend, relative,
or spiritual counselor. Building such a relationship may take
some time, but it can also provide absolutely critical support and
comfort.
Watch out for signs of
depression!
Take Charge of Your Health
It takes time to adjust to learning you are HIV-positive. It
forces you to think about your life, about what’s important
to you, and how you want to live. These are big issues,
which cannot be “solved” quickly. Coming to grips with
HIV—or any other serious illness—is a process, a journey.
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Living with HIV
Depression can be sneaky. What starts
out as a normal period of feeling “down”
or “blue” can grow into something more
serious. Watch for clues such as sleep
difficulties, weight gain or loss, restlessness, lack of energy,
and—most importantly—a feeling that nothing gives you pleasure
anymore. These clues can also occur for other reasons or as side
effects of HIV medications. If you or somebody else thinks you
may be depressed, talk to your doctor or health care professional
as soon as possible.
Living with HIV
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Your Health
Eat a healthy diet.
Eating well is critical for people who are
HIV-positive. But it can also be harder
because of a loss of appetite, sores
in the mouth, or other conditions that
make eating difficult. Eat a balance of
whole grains, fruits, vegetables, and
protein-rich foods such as meats, fish,
eggs, and dairy products.
• Get enough sleep
• Exercise regularly
• Avoid recreational drugs
• Reduce or do not drink
alcoholic drinks
• Don’t smoke
Be Responsible About Sex
Being HIV-positive confers the serious responsibility for not
passing the virus on to anyone else. That doesn’t mean you can’t
have sex. You just have to be very careful about sex and take a
few other precautions in your daily life.
• Use condoms correctly and consistently. Correct and consistent use of the male latex condom can reduce the risk for STDs during anal or vaginal sex. However, no protective method is 100% effective. Condom use cannot guarantee absolute protection against any STD.
• Use protection during oral sex. A condom or dental dam (a square piece of latex available at sex shops) for a woman or a condom for a man can be used. Do not reuse these items.
• Don’t share sex toys.
• Don’t share drug needles or drug works. Use a needle exchange program if one is available. Seek help if you inject drugs. You can fight HIV much better if you don’t have a drug habit.
• Don’t donate blood, plasma, or organs.
• Don’t share razors or toothbrushes. HIV can be spread through fresh blood on such items.
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Living with HIV
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Conclusion
Although testing positive for HIV can be scary, you now know
what to do and how to get help. You are well-equipped for this
journey! Remember that even though HIV infection is serious,
today this disease can be controlled with new medicines. The
overall death rate from AIDS has dropped in the past few years
because people have begun using these medicines.
Resources
AIDSinfo
A service of the US Department of Health and Human Services.
1-800-448-0440
www.aidsinfo.nih.gov
American College of Physicians
www.acponline.org/patients_families/
By learning about your HIV treatment options, you’ve taken
the first steps to living successfully with this chronic medical
condition. It will be difficult, at times. But you are not alone.
You gain power over HIV the more you know about it.
Existing and new medicines may extend your life, and reduce
symptoms from HIV infection and/or AIDS. You should work
with your doctor to find the medicines that are right for you,
since they can have different actions and side effects. With a
plan in place, you need to stick to the program, and work with
your doctor to adjust your program if needed. Your choices
in diet, exercise, and other lifestyle issues can really help your
mind and body cope more effectively with HIV. Above all, be
patient and kind with yourself as you begin this new journey
in your life.
800-523-1546
Centers for Disease Control and Prevention (CDC)
800-CDC-INFO (800-232-4636) (In English, en Español)
Hours: 24 hours a day, 7 days a week
E-mail: [email protected]
basic information (In English, en Español):
www.cdc.gov/hiv/topics/basic/index.htm
National HIV Testing Resources :
www.hivtest.org
The Gay and Lesbian National Hotline
A non-profit organization which provides nationwide toll-free
peer-counseling, information, and referrals.
Toll free: 888-843-4564
Hours: Mon.-Fri. 4 pm to 12 am; Sat. noon to 5 pm (EST).
E-mail: [email protected]
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Sponsor
Credits
Pfizer
Sponsor
Pfizer Inc. is dedicated to better health and greater access to health care for
people. Its purpose is helping people live longer, healthier, happier lives. Its
route to that purpose is through discovering and developing breakthrough
medicines; providing information on prevention, wellness, and treatment;
consistent high-quality manufacturing of medicines and consumer products;
and global leadership in corporate responsibility. Every day Pfizer helps 38
million patients, employs more than 100,000 colleagues, draws on the skills
of more than 12,000 medical researchers, and works to treat and prevent
illnesses—adding both years to life, and life to years.
Pfizer, Inc.
Partner
American College of Physicians
Patrick C. Alguire, M.D., F.A.C.P.
Director, Education and Career Development
Contributors to the Video
Cheryl Smith, M.D.
2nd physician still to be added
(add affiliations)
Partner
American College of Physicians
Established in 1915, the American College of Physicians (ACP) is the nation’s
largest medical specialty organization and second largest physician group. Its
mission is to enhance the quality and effectiveness of health care by fostering
excellence and professionalism in the practice of medicine. ACP membership
includes approximately 125,000 members including medical students and
affiliates. Members are physicians in general internal medicine and related
subspecialties, including cardiology, gastroenterology, nephrology, endocrinology, hematology, rheumatology, neurology, pulmonary disease, oncology,
infectious diseases, allergy and immunology, and geriatrics. Internists treat
the majority of adults in the United States.
Special Thanks to:
Mayor John J. Duran
Project Manager
Carol Brandenburg
Executive Producer
Conrad Productions
Guidebook Author
Stephen R. Braun
Medical Writer
Amherst, MA
Guidebook Designer
Cinda Debbink
Design Partners
www.dgdesignpartners.com
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DISCLAIMER: This guidebook and DVD program is intended for informational purposes
only, with the understanding that no one should rely upon this information as the basis for
medical decisions. Anyone requiring medical or other health care should consult a medical
or health care professional. Any actions based on the information provided are entirely the
responsibility of the user and of any medical or other health care professionals who are
involved in such actions.
The sponsor (Pfizer, Inc.), the producers (Conrad Productions and Alan Weiss Productions),
the guidebook author (Stephen Braun), the DVD scriptwriter (Deborah Gobble), and the
partner (American College of Physicians) have used reasonable efforts to include timely
and accurate information in this guidebook and DVD. Accordingly, the sponsor, producers,
writers, and partner make no representations or warranties, express or implied, regarding
the accuracy or completeness of the information provided herein and specifically disclaim
any liability, express or implied, in connection therewith.
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Living with HIV
Living with HIV
DVD
INSIDE
Learning that you have HIV can be scary
and confusing. What does it mean? Who
should you tell? What does the future hold?
What can you do to prevent getting sick?
This program gives answers to these
questions and many more. Being HIV-positive
is not the crisis it used to be. Yes, it is a
serious medical issue. But new medicines
can now control HIV and prevent or delay
symptoms. By learning about HIV and the
ways it can be managed, you will reduce your
fear and feel more in control.
Whether you just found out today that you’re
HIV-positive or you’ve known for years, the
information in this program will lay a foundation
for progress.
You’ll learn about:
• What HIV and AIDS are
• What to do if you are HIV-positive
• Finding the best help and medical care
• Anti-HIV medicines available today
featuring
John J. Duran, Mayor
West Hollywood, California