a virus mapped - Stichting HIV Monitoring

HIV treatment centres
Medisch Centrum Alkmaar
Flevoziekenhuis Almere
Academisch Medisch Centrum bij
de Universiteit van Amsterdam
Onze Lieve Vrouwe Gasthuis
Amsterdam
Sint Lucas Andreas Ziekenhuis
Amsterdam
Slotervaart Ziekenhuis Amsterdam Stichting Medisch Centrum Jan
van Goyen Amsterdam
VU Medisch Centrum Amsterdam
Ziekenhuis Rijnstate Arnhem
HAGA ziekenhuis Den Haag
Medisch Centrum Haaglanden
Den Haag
Catharina Ziekenhuis Eindhoven
Medisch Spectrum Twente
Universitair Medisch Centrum
Kennemer Gasthuis Haarlem
Medisch Centrum Leeuwarden
Enschede
Groningen
Leids Universitair Medisch
Centrum
Academisch Ziekenhuis Maastricht Universitair Medisch Centrum Sint Erasmus Medisch Centrum
Radboud Nijmegen
Rotterdam
Maasstad Ziekenhuis Rotterdam
Sint Elisabeth Ziekenhuis Tilburg
A VIRUS MAPPED
Universitair Medisch Centrum
Utrecht
Ziekenhuis Walcheren Vlissingen
Sint Elisabeth Hospitaal
Willemstad Curaçao
Isala klinieken Zwolle
Paediatric HIV treatment centres
Emma Kinderziekenhuis AMC
Beatrix Kinderkliniek Universitair
Erasmus Medisch Centrum-Sophia Wilhelmina Kinderziekenhuis
Amsterdam
Medisch Centrum Groningen
Rotterdam
8187-HIVM-BW .indd 2
Universitair Medisch Centrum Utrecht
06-11-2008 14:50:33
The HIV Monitoring Foundation: unique cooperation in a national HIV cohort
The HIV Monitoring Foundation
The Stichting HIV Monitoring (HIV Monitoring Foundation)
(SHM) was established in 2001 and, to date, has monitored
nearly 15,000 HIV-infected individuals in the Netherlands.
The reason for its establishment was the introduction of
combination therapy in 1996, which was prescribed on a
large scale to HIV-infected people.
The Dutch Minister of Health, Els Borst, was quick to make
the new HIV inhibitors available. Since there was the fear
that combination therapy would be unsuccessful because
of drug resistance, a large investigation was started simultaneously to measure the effects of early adoption.
This research, which was conducted between 1998 and
2001 and became known as the ATHENA (AIDS Therapy
Evaluation in the Netherlands) cohort-research project,
was successful. More than 3,600 HIV-infected people were
followed. All of them started combination therapy in 1996
or later. The research showed the dramatic positive effect
of combination therapy: fewer people contracted AIDS, and
fewer people died of AIDS. In addition, regular treatment
combined with combination therapy proved to be cost-effective for HIV care.
Once the ATHENA project was finished, it was decided that
research should be continued and extended to include all
HIV-infected persons. This led to the establishment of the
HIV Monitoring Foundation in 2001. At the start of 2002,
the foundation was officially charged by the Minister to monitor the HIV epidemic and the quality of HIV care in the
Netherlands, together with the HIV treatment centres.
Mission
The mission of the HIV Monitoring Foundation is ‘to further
the knowledge and understanding of the epidemiology and
the course of treated and untreated HIV infection’.
The foundation collects anonymous data about HIV infection
in cooperation with the national network of HIV treatment
centres. The data is processed and analysed, and the acquired knowledge is distributed. The data is also available
to other research groups within or outside the HIV treatment centres. Requests for data are approved only after
the presentation of a valid research proposal. The foundation reports on its data, analyses, and conclusions in a
yearly scientific report that is published on 1st December,
World AIDS Day. Since 2007, the foundation has organised
the Netherlands Conference on HIV Pathogenesis, Prevention and Treatment (NCHIV), a national scientific platform
where results of Dutch HIV/AIDS research are presented
and discussed. This conference is in collaboration with the
Dutch National Institute of Health and Environment, the
Academic Medical Centre of the University of Amsterdam,
the Netherlands Association of AIDS Treating Physicians,
the Sanquin Blood Supply Foundation, and the Dutch AIDS
Fund.
HIV Treatment Centres
Since early 2008, there have been 25 officially recognised
HIV treatment centres in the Netherlands and four paediatric HIV treatment centres. They are of vital importance for
the work of the HIV Monitoring Foundation. AIDS physicians, nursing counsellors and SHM data collectors in these
treatment centres work to ensure that anonymous data of
patients is added to the national monitoring database.
An AIDS physician will always ask an HIV-infected individual
whether the patient objects to registration of clinical data.
If a patient does not object, the data are coded and entered into the national database anonymously, to protect
the patient’s privacy. New data are collected each time a
patient visits the HIV treatment centre for a follow-up visit.
The SHM manages the database and is responsible for
keeping the data up-to-date and for ensuring its quality.
HIV and AIDS: the current state of affairs
As of the 1st of June 2008, 14,960 HIV-infected persons
in the Netherlands were registered in the national HIV monitoring database (figure 1).
Since 1996, 4,109 cases of AIDS have been registered,
and 1,281 patients have died. This means an average of
2.5 new cases of AIDS per 100 persons per year and 1.39
deaths per 100 persons per year. The average number of
AIDS cases per year declined from 9.1 in 1996 to 1.4
in 2008; the average number of deaths fell from 1.94 to
1.17. The steepest reduction in deaths in cases of HIV
infection has been noted among those who have received
combination therapy. More than 80% of registered patients
are treated with a combination of antiretroviral drugs.
Currently, within a year, between 70 and 80% of people on
therapy no longer have a detectable virus in their plasma,
and their immune system is slowly improving. The majority
of patients can tolerate the therapy, and, if they continue
to receive it, more than 90% will reach a point after five
years when the suppression of HIV is effective and the
number of immune cells is acceptable (figure 2).
that day has not yet come. For the present, it looks as if
the number of HIV-infected individuals will double by 2015,
which will be a great burden of care in the Netherlands.
Figure 1
Cu mu lativ e n u mb e r o f re g iste re d HIV-p atie n ts
15000
International cooperation
The HIV Monitoring Foundation works closely with various
research groups in Western Europe, the USA, and Canada.
The foundation is able to provide knowledge and data for
use in large international studies on the treatment of HIV
and AIDS, because it is one of the few organisations in
the world that collects all available national data, including
those on the effect of treatment. In addition, the foundation collaborates with the Imperial College in London on
mathematical modelling. These models may help predict
the course of the HIV epidemic in the Netherlands. The
HIV Monitoring Foundation has been labelled the ‘gold
standard for HIV monitoring’ by the World Health Organisation (WHO).
More information
Do you want to find out more about the HIV Monitoring
Foundation? Please visit our website or e-mail or call us.
12000
num be r of
9000
r e g is t e r e d p a tie n t s
6000
3000
0
2001
2002
2003
2004
2005
2006
2007
2008
c al en d ar ye ar
Figure 2
R e sp o n se o n co mb in atio n th e rap y
100%
So, there are fewer people with AIDS, and fewer people are
dying of AIDS. At the same time, the number of new cases
of HIV, particularly among homosexual men, is increasing.
This growth is caused by increased behavioural risk among
the group of people who do not yet know that they have
become infected. Reduced behavioural risk and regular
testing for HIV, together with timely treatment of the infection, could lead to control of the HIV epidemic. However,
HIV Monitoring Foundation
Academic Medical Centre, University of Amsterdam
Meibergdreef 9
1105 AZ Amsterdam
The Netherlands
Phone: +31 (0)20 - 566 4172
E-mail: [email protected]
Website: www.hiv-monitoring.nl
600
500
80%
400
60%
num be r of CD4
% p a t ie n t s w it h
c e ll s /m m 3
300
d e te c ta b le vir u s in
p la s m a
40%
200
• HIV = Human (it can only infect human beings),
Immunodeficiency (it affects the immune system of
the body) Virus. AIDS starts with an HIV infection and
is one of the most deadly infectious diseases in the
world.
• Cohort = a group of people followed during a certain
period of time for research purposes.
• Combination Therapy = the use of multiple agents to
treat a clinical condition, e.g., HIV.
• An HIV treatment centre in the Netherlands is appointed by the government and complies with the
rules that are imposed on such centres. This means
that its doctors specialise in treating HIV-infected
patients.
20%
100
0%
0
0
1
2
3
4
5
y e a r s a fte r s ta r t i n g c o m b i n a ti o n th e r a p y
Plasma viral load
CD4 count (immune cells)