| 
Past Issues
Volume 16, number 11
November 2002
Contents
Time for Treatment Education
to Evolve
It's about more than adherence
Project TEACH
One community's response to treatment education
Paisan Tan-Ud
Interview with a leading Thai HIV/AIDS activist
Boundary Issues
Education and treatment in San Diego
Treatment Ed Daybook
A week in the life of a frontline educator
Short Course
Notes on drugs in development
Global Treatment Update
Gates is all over the map
Opinion
James Learned on reclaiming HIV/AIDS empowerment
Towards
an HIV/AIDS Health Education Movement By Julie Davids
What is treatment education, really? Seminars, peer education,
workshops, "one-on-ones," adherence counseling, training
programs? Pamphlets, articles, interactive exercises, pens with
drug company logos, occasional trips and free lunches? Military
metaphors, biology lessons, tearful confessions, and cultural clashes?
Struggling rural programs, industry-sponsored inspirational speakers,
small armies of underpaid urban peer educators? Certainly it involves
health, hope, fear, controversy, elephants-in-the-room, conflict,
doubt, and lest we forget, illness, disability and death.
What we now call treatment education began to bloom when life-and-death
AIDS activism born in the 1980s collided with the downpour of Federal
and pharmaceutical funding that opened up after truly effective
therapies became available in the mid-90s. To me, activism means
working together to question conventional wisdom, and working to
change systems, as well as individual situations, through strategic
analysis and action. Treatment education started out as, and often
remains, an offshoot of activism. At a time when there were no good
options, people with HIV and their loved ones fought for scraps
of information on any promising therapy. And when they saw promise,
they fought for access to those options.
These days, treatment educators may be self-trained people with
or without HIV, community organizers and activists, people with
social work degrees, street-smart current or former drug users,
church folks, and occasionally, people with scientific or medical
backgrounds.
So we're a mixed bag using mixed resources, but we're almost always
overworked and overwhelmed by the challenges. On the one hand, we
need to know our content cold — from drug interactions to
how to get through to stubborn doctors. On the other hand, we need
the skills to swim and not sink in the world of people's real lives,
where lack of information can pale in comparison to the lack of
food, safe housing, emotional stability, or even, in the case of
an increasing number of incarcerated people with HIV fighting for
their lives behind bars, lack of freedom.
With all these demands, there's little time or room to take a step
back and look at both hands at once, to grapple with the multiplicity
of issues, to learn from other educators' experiences, and check-in
on the many emotional, logistical, financial and ethical challenges
of dispensing unbiased information that may prove to be wrong a
few years later. Throw in the need to deal with the structure, funding,
and politics of our programs, and the race to keep up with an ever-changing,
complicated realm of scientific and social data that can save or
change lives, and our stress is understandable. Treatment educators
may not always agree on methods or even message, but there is one
commonality: we all seem to share a passion for the work —
maybe because it's just too difficult to do without being driven
by passion.
Why Treatment?
The Fall 2002 issue of ACRIA Update is admirably dedicated to telling
the stories and strategies of a diverse group of 14 treatment educators
www.acria.org.
The issue is prefaced by a moving analysis written by editor and
long-time treatment educator and activist James Learned, on the
troubling transformation of treatment education from an initiative
carried out by a community for itself, to a client-focused service
that is performed for patients. He writes:
"Long before the phrase ‘treatment education' was
used, communities devastated by AIDS challenged power to save
the lives of themselves and those they loved. Early in the epidemic,
PWAs [people with AIDS] and their colleagues took their cues from
the women's health movement, learning everything they could about
the virus and the mysterious, deadly opportunistic infections
that were occurring. People who had understood nothing of basic
biology in school educated themselves about the intricacies of
the immune system, read and critiqued the results of clinical
trials, and shared what they learned with their community."
What does it mean as treatment education becomes increasingly professionalized
and formalized? What does it mean as the work is carried forward
by a new generation of people who may be very capable but did not
live through the early years when information and education were
inextricably intertwined with advocacy and activism? For one, it
may make us particularly vulnerable to fetishizing antiretroviral
therapy as the core concern around which all other educational topics
must orbit. Learned continues:
"1996 was a pivotal year in the history of HIV treatment.
The approval of protease inhibitors, the relatively uncritical
acceptance of the hit hard, hit early treatment model, the hopeful
theory of viral eradication, and optimism about the promise of
combination therapy suddenly made treatment issues both clearer
and more complicated. In many respects, ownership of HIV disease
was taken from PWAs and claimed by the medical establishment.
Previously, treatment information was disseminated to the community
mainly by the community — through PWA coalitions, buyers'
clubs, ACT UP chapters, newsletters like AIDS Treatment News,
and organizations such as Project Inform, Treatment Action Group,
and many others."
"With the complexities of combination therapy, AIDS was
redefined as almost exclusively a medical issue. The medical model
took hold because healthcare providers and public health officials
couldn't imagine that patients could understand Highly Active
AntiRetroviral Therapy (HAART) and the attendant diagnostics….
The goal was to convince people with HIV to get on — and
stay on — combination therapy. The focus became compliance,
as though compliance was the only variable in the success of treatment
for each individual — and as though treatment was necessarily
the best choice for everyone."
I wonder if we should ask, does our definition of ourselves —
treatment educators doing the treatment education thing —
help prioritize treatment as the be-all and end-all of decision-making
and living with HIV? Could we adopt something more neutral? A friend
recently suggested the bold move of reframing what we do as simply
"HIV/AIDS education."
At a time when a list of potential drug side effects or toxicities
can look strikingly similar to the risk factors for heart disease,
it seems unwise to not invest in combating the other risk factors
— like smoking — that have not necessarily been within
our area of expertise but have a profound effect on the health of
people living with HIV. But treatment education is too often disconnected
from mental health education and care, and we are rarely trained
to understand our role in working with people with moderate or severe
mental health conditions. I have yet to hear of an HIV/AIDS organization
with a systematic plan or resources to address the very high prevalence
of smoking among people with HIV.
Hard Core Curricula
We have all seen industry-produced materials that offer easy-to-grasp
explanations of antiretroviral resistance or handy tips for adherence
— and sometimes they are very good. But they almost always
come with subtle or not-so-subtle biases and omissions. Not surprisingly,
the basic message is often to "start consuming drugs and don't
stop."
So here's a challenge: where is the community's stylish kit of
reality-based information for treatment educators working with groups
and individuals? There are many great resources out there at varying
reading levels and formats, like some of the fact sheet series that
are rigorously reviewed and frequently updated, or articles from
treatment activist journals such as this one. But these are not
the same as a set of sexy materials with a teaching guide ready
for use by an overworked "adherence counselor" in a busy
urban hospital. Or by a community volunteer running a support group
in a rural area who can't quite figure out how to lead a useful
discussion on the contradictory information floating around about
structured treatment interruptions or lipodystrophy.
Lately, I have been talking to just about anyone who would listen
about my desire to see a core curriculum developed that's been shaped
by treatment activists and designed by the kind of cool people who
know how to make educational materials interactive and fun. The
curricula would offer treatment educators a starting point that
could be adapted for our many and varied efforts. Imagine bringing
together a group of treatment activists and educators to brainstorm
a set of core curricula that is absolutely accurate, doesn't gloss
over the real contradictions and controversies, and offers engaging
ways for individuals and groups to struggle with this information
rather than passively receive a lecture. Of course, a good set of
core curricula would cover the basics in a way that is not overly
reductive and would remain infused with a spirit of community activism
and history (and, I'd hope, is not too dependent on military metaphors).
The writers would also recognize that many people do not read at
a high level of literacy or may not be accustomed to relying on
written information when making major life decisions.
I also think it's time we talked about the working conditions endured
by members of the "profession" of treatment education.
I have met with dozens, if not hundreds, of peer educators throughout
the years who are doing the Lord's work for a stipend or maybe just
public transit tokens — with no sick time or vacation pay,
no chance of switching to the agency's benefits rather than relying
on Medicaid, no emotional or professional support given the intensity
of the work, and no possibility of advancement to full-time. And
it's no picnic either for the folks with full-time jobs, who do
hundreds of presentations a year to people with often overwhelming
needs for additional information, support and interventions with
medical providers.
So let's keep writing and talking and educating ourselves and those
we work for, not worrying if we are getting it perfect, but striving
to get a little further along in the constant struggle with this
lousy epidemic in our less-than-perfect world.
| Curricular
Picks
My top picks for curricula — either because I have
sought in vain for something that fits the needs of our work
at Project TEACH in Philadelphia, or because I feel that Project
TEACH has insights to offer — are:
• Structured Treatment Interruptions: Understanding
the data from chronic vs. acute infection; analyzing what
is known and not known in terms of different goals, from taking
a break from meds to self-immunization to recovery of wild-type
virus.
• The Tricky Matters of Drug Resistance, including:
Why would someone stay on meds to which they are "resistant"
when other treatments are not available? Is there such a thing
as "wimpy virus" due to drug-resistant mutations?
What is the difference between low-level and high-level resistance
and are there implications for cross resistance?
• "Re-infection" and "Superinfection":
What is really known? What are critiques of the data? What
makes this one of the most popular topics discussed by many
peer educators and AIDS service professionals, despite confusing
and contradictory data? How can we be responsible to the challenges
of prevention, including the prevention of STDs, while respecting
the individual struggles and choices of people with HIV?
• AIDS Activism: What is the history of AIDS community
activism that has brought us to this point and won greater
access to meds and resources? How has AIDS activism, and treatment
activism, changed in the last 15 years? What are the basics
of community organizing and mobilization that impact treatment
issues like research and access to therapies? How do activists
strategize and choose tactics? What does it mean to be an
organizer or community leader, and how can you take a further
step as an activist, even if you live in an isolated area?
• HIV Treatment in Prisons: What is the structure
of corrections systems and what is the provision of care behind
bars like for people with HIV who are locked up? What are
methods of advocating for yourself or a loved one who is incarcerated
and not receiving proper care? Why are the hours and days
after arrest often the most dangerous times for people with
chronic illnesses? What are successful examples of discharge
planning for the transition out of jail to ensure continuity
of care, housing, and support? What are examples of advocacy
models that have changed systems of care in individual jails
or at the county, state or federal level that we can learn
from?
• Street Drugs and HIV: What is really known and unknown
about the impact of street drugs on the progression of HIV,
on concurrent illnesses, and on antiretroviral therapy? What
about legal drugs like alcohol or diet pills? What are the
challenges of talking about these issues or being a supportive
person if you have a history of drug use and recovery?
– JD
|
Project TEACH
Instructors' Handbook By Julie Davids and Val Sowell,
Project TEACH, Philadelphia FIGHT
History of Project TEACH
Project TEACH stands for Treatment Education Activists Combatting
HIV. TEACH was initiated in Philadelphia in 1995 by Julie Davids
and Jeff Maskovsky, two members of ACT UP Philadelphia, working
in collaboration with two local organizations, Philadelphia FIGHT
and We the People Living with HIV/AIDS, Inc.
Philadelphia FIGHT brought together people living with HIV and
other AIDS activists, clinicians, and researchers to sustain a community
research initiative and bring cutting-edge treatment and research
information to the impacted communities of Philadelphia. Today it
is the largest provider of HIV/AIDS medical care in the region.
We the People, a groundbreaking PWA coalition primarily led by people
of color, was a central force for effective community mobilization
in struggles for housing, benefits and inclusion of people with
HIV in decision-making processes.
As treatment activists and organizations rooted in the day-to-day
experiences of people with HIV in Philadelphia, the initiators of
Project TEACH designed the program to move towards the stated goals
of people most impacted by HIV in the mid-1990s — current
and former drug users, people of color, and women. They felt that
crucial medical and HIV-specific information was not reaching their
communities, and that they did not have meaningful participation
in debates and decisions that impacted their communities. They felt
that people were dying because they did not have information that
would have saved or prolonged their lives.
Thus, the initial goals of Project TEACH were to ensure that people
living with HIV had adequate information to make informed decisions
about their health care, had continuing access to information as
standards-of-care changed, and could participate in the community
advocacy and mobilizations that have shaped the development of HIV/AIDS
treatment and care. In order to meet these goals, TEACH has developed
a hybrid model of training and support rooted in HIV/AIDS activism,
harm reduction, and community building.
Since its inception, Project TEACH has recognized that the potential
impact of HIV/AIDS treatment education in hard-hit and underserved
communities can be best realized through a process of community
building and interactive learning. The initial curriculum was determined
by local HIV+ leaders, the majority of whom were African American
people of all sexual orientations who were current or former drug
users.
What is Project TEACH?
Project TEACH began as a 30-hour, 10-session training. Today, the
course has expanded to 17 sessions over a two-month period, meeting
twice a week, with two semesters each year offering a choice of
day or night classes. In general, these are secondary prevention
trainings, focusing on how people living with HIV can stay as healthy
as possible for as long as possible by preventing opportunistic
infections or other complications of HIV as well as preventing the
transmission of HIV to others.
The focus of this instructors' handbook is on the basic principles
and beliefs of our program, and how we actualize them in the planning,
implementation and follow-up of our trainings. For those outside
of our region, it may provide an interesting document for comparison
with local programs or spark conversation on new initiatives. If
so, we would love to hear your thoughts and ideas.
Overview of Project TEACH Curriculum
Of course, there is no way we could cover all the information someone
needs for an optimal life with HIV. Our curriculum is designed to
provide:
- An encouraging environment in which everyone learns something
and learns that they can continue to learn more once the class
is over
- A link between community health beliefs and common misperceptions
about HIV and its treatment that values community experiences
while providing absolutely accurate information at our current
level of knowledge
- A variety of levels of sophistication of information in key
areas, so that people who know very little will not be lost while
those who enter class knowing more will not be bored
- Teaching strategies and interactive exercises to decrease competition
between individuals and to emphasize the importance of people
with HIV supporting one another as a community
- An analysis of subjects such as prisoners with HIV, needle
exchange, and pain management as issues rather than problems.
Issues, when used in the context of community organizing, refers
to the potential solutions to problems, in which ordinary people
play a role in campaigns large and small to change the conditions
that impact their lives.
In order to achieve these goals while shoehorning everything into
the hours available, we structure our curriculum around four main
subject areas: Treatment, Living with HIV, Communication Skills,
and Issues and Resources. It should be recognized that in each of
these areas, participants learn as much or more from fellow class
members as from the lead instructor or guest speaker; each area
includes interactive times, work in small groups and pairs, and
time for discussion.
Goals within each subject area include:
Treatment
- To gain or share the basic knowledge base on the medical aspects
of HIV/AIDS and current standards of care that are needed to participate
effectively in decisions about your own treatment.
- To recognize that different people have different priorities
about treating HIV and will choose from a range of treatment options
or strategies, and to recognize the need for people with HIV to
support peers whose decisions are different than theirs may be.
- To gain or share perspectives on progression of HIV, including
monitoring, lab tests and clinical symptoms, while dealing with
the frustration of not being able to fully predict what may happen
to yourself or other people over time.
- To discuss current controversies and debates about HIV treatment
— such as superinfection, when to start treatment, or structured
treatment interruption — in order to participate in discussions,
understand the range of perspectives of care providers, and to
gain information for making your own decisions.
- To understand the history of AIDS treatment activism, how it
has influenced current treatment options and strategies, and how
to participate in ongoing treatment activist issues and campaigns.
Living with HIV
- Learning and sharing the balance between living life fully
and being cautious in order to preserve or prolong health.
- Understanding key symptoms or indications that call for immediate
care or going to the hospital.
- Discussing the benefits and challenges of disclosure, including
the recognition that it is each individual's right to determine
the level of disclosure that works best.
- Managing the anxiety and stress of dealing with the ins-and-outs
of this disease.
- Managing the stress of this curriculum — learning new
information about "what could go wrong" or "what
we're not really sure about" is stressful.
- Coping with the often confusing or frustrating information obtained
from doctors and other service providers, including learning from
people who have handled similar situations.
- Discussing the advantages of working together as a community
rather than as isolated individuals.
- Exploring next steps as an activist, recognizing that everyone
has qualities that are useful and can develop new skills to help
change conditions that impact yourself and your communities.
- To continue learning and developing as individuals and communities
by identifying future directions to explore after the course ends.
Communication Skills
- To learn how to communicate your needs effectively.
- To learn and improve skills for communicating with care providers
and gatekeepers that can stand between you and what you want or
need.
- To strategize how to enhance and/or change your relationships
with doctors, health professionals, service providers, family
members, other people with HIV and community members you might
come into contact with.
- To learn how to hear people who make us uncomfortable and to
find ways to respectfully discuss topics that bring up strong
feelings.
- To learn, practice and improve listening, understanding and
responding skills.
- To recognize the potential problems with giving advice or assuming
that other people with HIV will benefit if they do exactly what
you did.
Issues and Resources
- To expand understanding of HIV/AIDS as not just a medical condition
but something that is political, social, and economic in its personal,
community and societal implications.
- To review key moments in AIDS activism and community mobilization,
often integrated into the curricula based on the gains of these
movements (such as the expansion of the definition of HIV/AIDS
to include conditions prevalent in women or injection drug users.)
- To learn when and how to access area services, by learning
key resources and strategies for accessing services, rather than
simply reviewing long lists of AIDS and support organizations.
- To recognize that people may not respond in the same ways to
controversial issues as you do, and to deal with that respectfully.
- To agitate for your needs if you are not getting the health
care or services you deserve, and how to advocate for people with
HIV in the hospital, prison, or other controlled settings.
Priorities of our curriculum are:
Self-determination: People have a right to know
what's going on with their bodies, and to understand what their
doctors are recommending and why. Each person should be able to
make decisions about their health care that take into account their
health beliefs, priorities, and goals.
Social and political realities: HIV/AIDS is a
political condition — people with HIV in the United States
are often from politically marginalized groups, such as people of
color, drug users and queer people, that have not controlled major
resources in our society. Thus, individual, community and societal
opinions and treatment of HIV/AIDS is affected by the racism, sexism,
homophobia and class bias that is pervasive in our nation. Our curriculum
and standards reflect the lived experiences of people impacted by
HIV — we do not gloss over the impact of bias, stereotypes
and neglect that have shaped our society's response/lack-of-response
to the epidemic. In addition, we talk explicitly about the possibility
of bias, the impact of stereotypes, and horizontal hostility (when
people act more aggressively towards members of their own peer or
racial group) in the classroom, and ask people to actively resist
these pervasive ways of relating to one another.
Power: Power is the ability to make things happen,
and is present in all levels of dealing with HIV. People who go
through Project TEACH are encouraged to use their power to participate
in their health care and have a voice in decisions that impact themselves
and their communities. If their doctor does not want them to participate
in their health care, we ensure that they have the skills to access
a better provider. We also take people through a process of recognizing
that the skills they have developed in their daily lives —
as a church member, a mother, or if they are "out there"
using — can be potent tools for increasing the collective
power of people with HIV and their communities and to win meaningful
change in their lives.
Community Solidarity and Mobilization: People
living with HIV are not victims, and the course of this epidemic
has been actively altered by the mobilization of people living with
HIV and their loved ones. We seek to embody in our curriculum, pedagogy
and policies a spirit of collaboration rather than competition,
and encourage people to participate in community mobilization on
issues they care about.
Learnable materials: The activists who became
experts in HIV treatment were self-taught. Although many well-known
leaders in treatment education and activism had the benefit of advanced
education that has not been within reach of most TEACH members,
we have seen that TEACH members can, and wish, to learn sophisticated
treatment information. We emphasize concepts and philosophies of
treatment, rather than going through the dosages, side effects and
details of each drug, in order to help members develop a framework
of understanding into which they can add new information from fact
sheets, articles and workshops as our knowledge base extends.
In addition, we work to make information understandable without
"dumbing it down," by trying to use accurate, clear, non-technical
language and by repeating key concepts and information at multiple
points in the course. Homework readings and interactive exercises
give additional opportunities to learn essential information.
Spreading the word: On the first day of class,
each Project TEACH student is given the goal: "Each 1 TEACH
10." People need to take this lifesaving information back to
their communities, their families and friends and to their networks.
They can reach people that TEACH or Philadelphia FIGHT never will.
Themes Articulated by Project TEACH Instructors
The curriculum of Project TEACH was developed over the years by
people rooted in the experiences of living with HIV and/or participation
in AIDS activist struggles. Thus, our materials and approach show
the results of a dynamic process that is not based in traditional
education methods. We have found it useful to analyze our curriculum
based on what we have ended up with, rather than methodically working
to develop materials to meet well-defined goals and objectives.
We have found that we tend to emphasize several overarching themes
throughout the term. Some of these themes find their way into formal
curricula; others exist more as oral histories of the matters that
have been most important to hundreds of class participants.
Living Well with HIV
- Unnecessary suffering is unnecessary. You should have a good
life. You can't pay back past behavior that you are not proud
of through suffering today.
- Honor people who've had deep health challenges.
- Really early, address the tyranny of the healthy. There will
be people who've been HIV+ for years and are healthy now, and
sometimes they have a tendency to castigate people who are sicker,
saying, "You just need to take care of yourself and you'll
be okay." Don't let it happen in the class.
- Everybody's body is different. Find new ways to say that.
Activism and Empowerment
You should stick up for yourself (in the doc's office, in the community,
within ACT UP), and there are many skills you can learn to help
you do that. It's up to you to decide what works best for you.
But it's important to recognize that what you face is not simply
a struggle to get what you need in a confusing but basically fair
system. Often the system is not fair. Sometimes, those in power
make bad policies intentionally, either because they would rather
hurt people with HIV and their communities than alienate their campaign
funders, or because they have personal beliefs that further stigmatize
or discriminate against people with HIV, people who are gay/lesbian/bi/queer
and/or transgendered, and against poor people or people of color.
HIV is political, and often there are political decisions that
impact people's health. We need to fight for what people need as
individuals, but remember that we have also successfully fought
to change the larger systems that create these barriers to individuals
getting what they need — and that is why we continue to need
activism and organizing and education.
This is not a complete set of curricula. We have not produced a
stand-alone training manual for use as curricula, although we have
included several interactive exercises as examples in a longer document.
In fact, we support the proposal for treatment activists and treatment
educators to produce an independent set of core treatment curricula
in the public domain, and would eagerly participate in that process.
However, our existing curricula is available if you contact us —
in general, we prefer to have technical assistance agreements with
organizations when we share our full set of curricula.
For more information, contact Val Sowell, Project
TEACH Coordinator:
vsowell@fight.org
(215) 985-4448 x163
Health Emergency
2003
The Dogwood Center and the Harm Reduction Coalition have
jointly released a new report, Health Emergency 2003: The
spread of drug-related AIDS and hepatitis C among African
Americans and Latinos.
Here is the foreword by Dr. Joycelyn Elders, former U.S.
Surgeon General:
This powerful report brings home the severity of the problem
of AIDS spread through dirty needles. It makes me angry!
We have got to be about preventing disease! We have better
drugs, but we still don't have a vaccine or a cure for this
disease. We have watched people die from this disease; now
they must learn how to live with HIV/AIDS. But why can't we
help prevent this disease by providing clean needles? We do
not allow people to get the clean needles that would reduce
the spread of HIV disease, yet we spend thousands of dollars
to treat each person who develops AIDS, to take care of them,
to watch them die. That makes no sense! We have got to be
about preventing problems, not fixing things after they are
broken.
Our best scientific research shows that needle exchange programs
do not increase drug use, but do reduce the spread of HIV.
We need to speak out. Silence about the importance of needle
exchange programs is causing the deaths of thousands of our
bright young black and Latino men and women. Time is slipping
away. Our bright young people are slipping away.
We must recognize the spread of AIDS through dirty needles
as the public health problem that it is. We must accept the
scientific data and stand up for needle exchange programs
and begin to save precious lives!
Copies of the report and information about harm reduction,
AIDS prevention and drug use are available at: www.dogwoodcenter.org
or www.harmreduction.org |
Interview with
Paisan Tan-Ud By Karyn Kaplan
Paisan Tan-Ud is the Founding Chairman of the Thai Network
of People Living with HIV/AIDS (TNP+), Bangkok, Thailand.
How did you become an AIDS activist/treatment access leader?
And how did Thai people living with HIV/AIDS (PLWHA) coalesce into
a movement and put treatment access on the top of its agenda?
Around the time I learned my HIV status about 12 years ago, we
started Thailand's first group of PLWHAs, Wednesday Friends Club
(WFC) at Chulalongkorn University Hospital. At first I just participated
in their social activities and group support, recreational stuff
and seminars. I got there through the encouragement of social workers
at a therapeutic community (TC) for drug users where I was staying,
and I and my other friends there who were positive got involved
because we thought this was the only way we could survive —
it was the only thing out there for us. Our TC took us and I soon
felt this is what we needed.
No one understood us at that time, and everyone was scared. PLWHAs
used to come to the medical clinics and hold newspapers up in front
of their faces, so as not to be recognized. No one would look at
each other. So, I joined a group of HIV+ people in my TC and we
went to WFC every month, whenever we went to that hospital to get
care. There were about 12 of us. We weren't that involved at first,
mainly because we had the TC, but I was still interested in their
activities because I felt it was a very good place for PLWHA.
Then, I left the TC and started working at Alden House, an NGO
that works with HIV+ drug users. I also became the Wednesday Friends
Club Assistant Manager. At that time, I was talking to my other
PLWHA friends and we were seeing many of our friends dying or living
their lives under such duress, so we started to discuss making our
group more active, beyond just support. At the same time, in the
Upper North of Thailand, many groups were also forming because it
was the hardest-hit region. I started working with people in the
northeast, and met more friends through the NGOs who were inviting
us to speak about our lives to the public.
We ultimately established a central PLWHA network, starting soon
after the 1995 Asia Pacific Islands regional AIDS conference in
Chiang Mai, where we had held a special session for the first time
for all Thai PLWHA to come together and talk and strategize. At
that time, we wanted to strengthen our own regions before taking
the step to build a national group. But the following year we formed
a national network, TNP+, and I was elected its Chairman.
Our mission at that time focused on improving the quality of life
of PLWHA and all who are affected by HIV/AIDS. Our objectives included:
1) supporting and strengthening PLWHA groups; 2) campaigning for
human rights and social welfare for all PLWHA; and, 3) cooperating
with NGOs and government entities to move toward resolving the epidemic.
At that time, the climate was full of discrimination and misunderstanding,
combined with a total lack of treatment. The basics of HIV transmission
were hardly understood by people in general. Doctors had no ability
to treat us and had a terrible attitude toward us. The prevailing
thought was that we were bad for having done this to ourselves.
We did have a government AIDS Division in the Ministry of Public
Health and a National AIDS Committee early on. We did not have a
TNP+ budget. We came together at meetings funded, initially, by
the Thai NGO Coalition against AIDS, and would meet in Bangkok about
every three months. We had no funding for activities and just went
to meetings we were invited to on our own money. We used those opportunities
to share our experiences but we really couldn't move forward. We
were determining our strengths and potential. In our second year,
we focused on a long-term plan and made treatment our banner issue.
We started working with NGOs who were dedicated to the right to
health and treatment for PLWHA, such as MSF and AIDS Access Foundation,
a Thai NGO. At our second annual TNP+ conference, we all agreed
to take up a Treatment Access Campaign and chose to focus on opportunistic
infections (OI), getting 100% treatment coverage for OI as a goal.
We focused on cotrimoxazole, a cheap PCP prophylaxis.
This strategy showed that people with HIV/AIDS are the core of
the infrastructure. We are critical in any plan to scale up treatment,
because it is we who provide peer support day in and day out, who
help each other adhere better to our meds, who take each other to
the hospital and do patient advocacy and have the direct experience
with these drugs and interventions. Especially now that Thailand
will receive one of the largest grants (US $133 million) from the
Global Fund for HIV/AIDS, TB, and Malaria, PLWHA will be a critical
component of a successful strategy of expanded treatment access
and care.
After five years as the Chairman of TNP+, I have stepped down but
continue to work closely with them in an advisory capacity. Having
seen the need for stronger PLWHA leadership, for more clear information
and skills to build capacity in the grassroots, and wanting to bridge
the gap between us and our regional PLWHA partners and international
AIDS activist allies, I have formed my own treatment advocacy group,
the Thai AIDS Treatment Action Group (TTAG). It recognizes the need
to support the advocacy capacity of people living with HIV/AIDS
on the local, national, and international policy level. I am very
excited to start the activities and start raising the voice and
strength of PLWHA in holding our government accountable to its obligations
and promises in terms of treating people living with HIV/AIDS in
Thailand.
Recently, people living with HIV/AIDS and some NGO allies made
history in Thailand's Intellectual Property court. Can you tell
me about that victory against Bristol-Myers Squibb (BMS) and its
significance for treatment access in Thailand?
We are fighting to produce generic ddI tablets, a fight we started
about three years ago. At first, we demanded our government to order
a compulsory license. They were afraid of U.S. trade sanctions,
a very real threat to our country, so we were forced to produce
only powder form ddI, which as you know is very difficult to tolerate.
The ddI issue emerged because there was a working group of academics
and lawyers looking at the problems of drugs in terms of patent
issues and drug company monopolies, and we joined with them as the
Thai national network of people living with HIV/AIDS (TNP+) began
to focus more on treatment access issues and to do something about
deadly restrictions on our country's ability to provide lifesaving
medication to PLWHA. Out of that collaboration, between the consumer
rights people, intellectual property and pharmaceutical experts,
and PLWHA and NGO allies, came the court case that was won by two
people living with HIV/AIDS and an AIDS advocacy group, AIDS Access
Foundation, against Bristol-Myers Squibb, the patent holder, and
our Department of Intellectual Property on October 1, 2002, in the
Intellectual Property Court.
Winning in the court is significant for us because patents are
killing our people and people with AIDS around the world. In fact,
there were going to be a few more PLWHA plaintiffs on the case but,
in the year it took for the first case to be decided and to submit
papers for the second case, they died. We must let people know that
it is not just the product patent that is bad, but that even the
process patent is bad. BMS claimed they used an "innovation"
that gave them the right to keep the ownership of buffered ddI tablets,
but adding a buffer is common knowledge to pharmacists. Clearly
their motive was greed and exploitation of our system. The court
did rule their application was illegal, and now we are moving into
a second court case against BMS, demanding they revoke the patent
altogether.
In fact, the first time people living with HIV/AIDS in Thailand
held a public demonstration, it was about a treatment access issue.
We were expanding access to medication for opportunistic infections
and came up against the reason that ARV could not be made as available
as OI drugs — it was because of patents. We immediately put
treatment access at the top of the TNP+ agenda, started to become
familiar with the issues such as TRIPS (Agreement on Trade-Related
Aspects of Intellectual Property), and demanded our government invoke
a compulsory license for ddI because, according to TRIPS, we had
the right to address our public health crisis.
Two hundred people stood in front of the Ministry of Public Health,
for three days. As I mentioned, the government would not do it,
citing fear of trade repercussions. Even though I got a personal
letter from Charlene Barshefsky, then U.S. Trade Representative,
promising there would not be action taken against our government,
Thailand remained reluctant. But here we are today, victorious in
the courts; people with HIV/AIDS beat Big Pharma. I hope now our
Government Pharmaceutical Organization will immediately start producing
generic ddI according to its legal right.
How do you see the international AIDS treatment access movement
impacting on or useful to your movement?
We can see many barriers for people with HIV/AIDS to access treatment.
Mainly trade regulations like the TRIPS agreement, and other negative
impacts of globalization that have increased rather than decreased
poverty, as its promoters promised. Resources are scarcer now. The
promises made about the benefits of free trade are not true. Poor
countries are taken advantage of. Capitalist concepts like this
have been detrimental to our cultures and economies.
In relation to AIDS, patents that give long monopolies on drugs
that we need today to stay alive are deadly to people with HIV/AIDS.
When we became conscious of this in Thailand, when we learned about
the drug company monopolies that were holding back our own capacity
to make affordable drugs, we saw that strategically we needed to
work together. But in Thailand we have many pressing issues nationally,
and working internationally, until more recently, was not a priority.
And of course the language barrier is a major impediment. But it
is helpful to have help in watching our government and it is helpful
to have help in addressing the corrupt drug company influence on
our government. It is also necessary to challenge new and powerful
entities like the World Trade Organization and of course the U.S.,
which needs to stop waging a war on poor people around the world.
Since we have started working with international partners on treatment
access issues, you can see many things have moved forward. There
was the court case in South Africa, dropped by the 39 drug companies
in the face of international public pressure, and there was Thailand's
activist cooperation with S.A.'s TAC when they came here to buy
cheap fluconazole to take back home in defiance of high drug company
pricing and international trade restrictions on exports of generics.
Thailand, too, had a lot of international support when we demanded
coverage of antiretroviral therapy under our universal health care
plan last year. AIDS was one of two diseases whose treatments were
excluded; after our demonstration we received a commitment from
the Ministry of Public Health to cover ARV. Also more recently in
our court case battle against the BMS patent on ddI, we worked together
with international groups like Medecins Sans Frontieres/Doctors
without Borders, who often are our allies on the ground here in
Thailand, and with the International Gay and Lesbian Human Rights
Commission (IGLHRC) and Health GAP to let people know about the
case and ask for advocacy support including press coverage and a
letter writing campaign. International pressure on our government,
or on the U.S. government, and on multinational corporations has
been effective sometimes, but the truth is we need more. As I said,
there are barriers to working cross-culturally but we will move
forward.
The next International AIDS Conference will be held in Bangkok
in the summer of 2004. What are the Thai people living with HIV/AIDS
focusing on in terms of treatment advocacy? Describe your expectations
from international partners. How do you envision working toward
these goals?
Thailand could be the next Brazil. We have excellent capacity to
produce generic drugs and in fact 70% of our AIDS treatment budget
goes to Thai-produced generics. We produce a combination drug called
GPO-vir (3Tc, d4T, NVP). Yet, our national AIDS treatment budget,
which is 250 million Thai Baht (US $5.8 million), has hardly increased
in five years. Antiretroviral therapy is still excluded from coverage
under our universal health care plan, despite government promises
almost one year old now. We need our government to stand for us,
to stand with us as PLWHA in particular in their position toward
the WTO and the U.S. The Doha Declaration upheld the precedence
of health over trade and profit. What more should our countries
need to fulfill their obligations to improve the health of all without
discrimination? Yes, we got a huge Global Fund grant, but that should
not be an excuse for the government to not continue putting additional
funds toward its national AIDS treatment budget. PLWHA must be included
meaningfully in the government's plan to improve the quality of
life of people living with HIV/AIDS — many people have jobs
because of AIDS, many people get funding for themselves because
of AIDS, but how many of those people are people living with HIV/AIDS?
We PLWHA have the right to self-determination and the right to
have a voice, not just a seat, at the table where decisions that
affect our lives are made. We hope to gain regional and international
solidarity for our advocacy goals and objectives. The government
in its Global Fund proposal laid out benchmarks for the provision
of AIDS treatment and comprehensive care. Yet it has a weak policy
and no strong commitment for rolling it out immediately. We will
hold them accountable to those stated goals, and at the same time
build our PLWHA capacity to be leaders, to better advocate for our
positions, and to ensure a real partnership with NGOs and government
through our strong and indispensable participation in the plan to
scale up treatment. We are starting now to build coalitions and
to strengthen our own movement — by the International AIDS
Conference in Bangkok, we hope to be another model for the world,
like Treatment Action Campaign was in Durban; to show that we have
a voice, we know what we want, and we have the capacity to work
effectively toward realizing our right to health and life. We are
going to use that opportunity for visibility.
HIV Education:
Crossing Borders By Tito Ramirez
Reprinted from ACRIA Update, Fall 2002 (www.acria.org)
As a gay man who fled Mexico in 1994, I understand the injustice,
discrimination and abuse endured by homosexuals there. Mexican society
as a whole disapproves of homosexuality. Public opinion is dominated
by the official view of the churches — homosexuality is a
sin. This disapproval is combined with a "machista," or
chauvinistic philosophy, that requires men to be manly and women
to be feminine.
There is tremendous societal pressure on gay men to remain closeted
in Mexico, so many marry and have children. Openly gay and transgendered
individuals are persecuted daily and sometimes murdered in all parts
of Mexico, their bodies often unclaimed by family members. These
so-called "crimes of passion" are seldom solved; legal
authorities may not bother to investigate. The city, state and judicial
police are frequently involved in the abuse, torture and extortion
of gay, lesbian and transsexual individuals. I have witnessed and
experienced this myself.
Mexican men who test positive for HIV come to the United States
if they possibly can. There are two main reasons. Once identified
as having HIV, they are assumed to be gay by family members, co-workers
and, sometimes, spouses. Second, medical treatment and the costly
antivirals are limited or often unavailable in Mexico. Only individuals
with a significant employment history and membership in the Social
Security system in Mexico are eligible to receive medications.
People with HIV in Mexican hospitals are isolated from other patients.
Doctors and other healthcare providers often wear double gloves
and masks when entering an HIV-positive patient's room. A young
Mexican mother who now receives medical treatment in San Diego was
initially diagnosed in Tijuana. She spent three weeks in a hospital
there. During that time, she was never touched by a nurse or a nurse's
assistant. Her meals were left outside the door of her room on the
floor with the door closed.
Many gay men from Mexico who come to the U.S. seeking medical care
and the freedom to be themselves petition for political asylum.
I did it in 1997, and the INS granted my case in 1998. Since 1999,
I have worked as a case manager and treatment advocate at Comprehensive
Health Center (CHC), a community clinic in San Diego. Most of my
clients are Latino men who can identify with me and whose situations
often reflect those of my past. Although I may not disclose personal
details, I do refer my clients to the support groups and immigration
team that assisted me.
The Treatment Education and Advocacy Program (TEA) at CHC has as
its primary goal the empowerment of individuals beginning or changing
antiviral therapy. Adherence is always stressed in the context of
a client's immediate circumstances and needs. For those who are
homeless or living in untenable situations, I facilitate housing
and other relevant referrals since stability is a prerequisite for
a person who is serious about taking HIV medications. Stability
includes economic security, mental health, recovery from substance
abuse and other factors such as access to transportation and medical
care.
Also important is information about HIV and how the medications
work. As a treatment educator, I give workshops in Spanish about
the etiology of the virus, the effect of antivirals on CD4 count
and viral load, short and long-term side effects of the medications,
and the necessity of adherence. In an abbreviated form, I attempt
to do the same thing with individual clients considering treatment
or changing therapies.
Finally, a system of support is essential for the person who is
ready to be adherent to medications. If family or friends are not
available or supportive, the individual must look elsewhere. Currently
in San Diego there are four active Latino agencies that offer counseling
and support groups in Spanish. Additionally, there is now an HIV
ministry affiliated with a local church. It provides vital information
and spiritual support to infected individuals.
When stability, information and support are in place, there is
a greater likelihood that a person will be adherent to medications.
When the viral load goes down and the CD4 count begins to rise,
the client understands what is happening and how the medications
are working. Equally important, the individual may speak about "getting
his or her life back" and the renewed pursuit of goals once
abandoned because of HIV.
How fortunate we are in San Diego and other cities in the United
States. The infrastructure here provides treatment for persons with
HIV regardless of ethnicity, social or economic class, and sexual
orientation. In my opinion, it will be a long time before the Mexican
government faces this epidemic with the same commitment evidenced
here. As the small, independent agencies in Mexico struggle to help
HIV-infected individuals, we can only hope that our example serves
as a beacon of hope and promise for them.
Tito Ramirez is a Case Manager and Treatment Advocate at Comprehensive
Health Center, San Diego.
Diary of a Treatment
Educator By Anonymous
Note: All names of individuals and programs have been changed
and identifying details have been altered.
Monday:
Inland Tri-County Agency
The woman who led me into the group room said, "There aren't
going to be many people here today" and then left. There were
four people, two of whom had chronic HBV, and they had lots of questions.
I know I'm needed when people ask which hepatitis virus is airborne.
I offered to meet with each of the participants individually after
the group and one agreed. It was a major hassle to get a private
room there — first they led me into a case management den,
which was a series of cubicles with other people working nearby.
I insisted on getting space with some privacy. I'm glad I went up
there, and feel like I could continue to do some good work, but
they are making it an ordeal.
In the office
My Monday staff training group was more engaged this time and I
thought it was pretty exciting because I had a chance to address
lots of questions that indicated misinformation — people tended
to attribute ART resistance solely to poor adherence rather than
considering serial monotherapy, improper dosing/absorption, etc.
I mentioned that certain side effects may or may not be directly
caused by the drugs, HIV itself, or another underlying or developing
condition. Participants were extremely interested in the Guidelines.
I promised to bring copies to the next workshop. We discussed the
pros and cons of starting "early" or "later"
and of taking STIs/drug holidays in a real-world sense, i.e. asking
clients what they are doing in terms of monitoring their VL/CD4
cell counts.
Went upstairs to do two intakes. Both people were excited and happy
to have a chance to sit down with someone who had time to speak
with them. The first client is someone it will be great to work
with — he is invested in getting good care, asking questions
and learning as much as possible. The second client has a lot of
issues (with anger and stress management, recovery from 13 years
of heroin addiction) and really needs what ever support and information
he can get as his health care appears to be very sketchy.
Tuesday
Women's Drop In
The workshop went very well, although I didn't stay strictly on
topic — the women had questions about the relative risk of
oral sex (this was introduced initially by some questions about
re-infection when two positive people have unprotected sex —
and could a person make "antibodies to protease inhibitors
from someone's semen who is taking them?") Anyway, the group
was aware that we'd strayed and it was easy to get back on topic.
One woman said that it was really, really helpful — she had
never understood what her HIV meds were doing — having an
understanding made her feel much more invested in adherence. There
were a lot of comments about the various side effects people had
experienced with different medications, and resistance came up a
lot. I covered a little bit of that and said I'd be happy to come
back and do another workshop just on resistance.
There was one person who had a pretty detailed question about stopping
HIV medication. She was told by her doctor that no one should ever
stop taking their medications because the virus could get too strong
for the medication to kill — but she knew people who had stopped
taking them. So what was happening, who was right, why would someone
stop taking meds, did everyone need to stay on them? I encouraged
her to stay and talk if she could but she said that she had another
appointment and that she would try to come back next Tuesday.
Suburban Center
This staff training went well — people were really interested
and asked lots of questions, including things like "How can
we work with medical providers?" and "How can we educate
clients?" and "Does Medicaid pay for peg-interferon?"
Of course, it wouldn't be a workshop without some characters, like
the staff member who kept nodding out.
Although the person who had arranged the group wasn't there, things
went pretty smoothly until 20 minutes before it ended, when a supervisor
interrupted us and suggested we quit so they would have time to
clean up. The group told her that we still had 20 minutes left,
and they remained invested for the whole time. This was especially
amazing because the group ended at 7:30 p.m. A couple of the participants
had additional questions that we answered individually after the
group was over. We encouraged people to contact us directly anytime
they had a question.
Wednesday — Rain
Decent but not fabulous workshop at Long Station Cares. Got lost
in the rain and arrived soaked. The directions were completely misleading.
There were a couple of talkers who sure had a lot to say! Most of
it was very interesting, although not pertinent to the topic of
the workshop, which was resistance and cross-resistance. I fielded
questions about sperm washing, why teenagers have such a high rate
of HIV infection, why some people who are long-term drug users seem
to live a lot longer than those who take ART and take good care
of themselves (one person said, "just because someone gets
clean doesn't mean that they have not already really damaged their
body").
I was confronted by the director who expected me to offer bus passes
to people who showed up 25 minutes late. I gave out the bus passes
and nicely explained (again) what our policy is about paying for
transportation.
Fairlawn Village
There was a delay with lunch and the next group started 25 minutes
late. Almost everyone was engaged in the workshop — "HIV
Meds and How they Work." People had a lot of comments about
side effects and depression. One woman said that her HIV meds make
her feel tired all of the time. I responded by letting the group
know:
- There may be another reason why a person is not feeling well,
and talking to a doctor to figure out what is causing symptoms/side
effects is a good idea.
- There may be other options for a person's ART selection.
- It's important to look at and treat the whole person.
The group really liked this last point. Two members shared their
experiences with stress and depression and said that coming to the
group had been a huge help and that they had gained weight and felt
less tired after participating.
I've scheduled two more workshops there. There was, of course,
a bus pass squabble. I outlined our policy to the Director clearly
so that participants would be aware that they must attend the entire
workshop to get the passes, but of course, one person was pretty
indignant. I hate this — it feels really gross to squabble
with someone over $4.00 — especially when it's pouring outside.
Thursday
Today I did two workshops at Southside Drop-In. The first one, a
staff training on HCV, went well. The staff was very engaged, and
had really good questions and comments. One person stated that it
was impossible for homeless people to take HAART. So I asked the
group to suggest some possible interventions and the best they came
up with was to "get housing for the person." So I said,
"what about a regimen with fewer pills — what about finding
out where they could get meals? These may be easier and quicker
to achieve than finding housing, which of course is also very important."
They did not have any solutions for active users — I suggested
asking the person about their patterns of using to see if they could
incorporate their HIV medications into these patterns. All in all,
I was happy about how it went.
The workshop for the peer educators at Southside was great! Somehow,
it seemed to arrive at the perfect balance of content and process
and the group was really engaged. The topic was HIV pathogenesis
and while discussing transmission, we really got to explore how
harm reduction could be integrated into the delivery of prevention
services. It got really exciting when I said that next week we'd
talk about how the drugs work. One participant said, "I've
never asked how the drugs work — I've only asked about side
effects." I said, "once you get an idea of how they work,
the side effects certainly won't become less of a problem, but having
more information about the other things drugs are doing can be helpful."
Anyway, his eyes lit up. He said he'd never thought about it that
way and that he really wanted that information — and the rest
of the group was really excited about learning more and said they
can't wait for me to come back. They also asked if the group could
go more than one-and-a-half hours, so I suggested 2 hours with a
10 minute break next week.
I went to the graduation at the LifeGoals Program — an incredibly
moving experience. I would have been crying anyway, but finding
out that the program was de-funded and hearing the graduates speak,
many of them saying that this was the first time they had ever been
able to complete anything and having gotten to know them and watch
them open up, become less angry, more trusting and open, really
made it all the more emotional. The thought and hard work that's
gone into the LifeGoals program is amazing — and it was so
wonderful to go somewhere where people actually care so much about
the work they are doing and the people they provide services to.
It is very disturbing that this wonderful program is coming to an
end.
Friday
This morning's workshop at River Group went well. I thought I did
a decent but not a fabulous job. Things like "Do they still
call it full-blown AIDS" and "ARC" came up, as did
transmission stuff around oral sex and a lot of valid but difficult
questions — i.e. "I have several clients who are mentally
ill. They really need to be on HIV meds but they take them for a
few days and stop because of side effects. Then the whole cycle
starts up again a month later when they go back to their medical
provider. What can we do about this?"
I'm going to go back and go over how antiretrovirals work again.
Towards the end of the workshop, one of the staff said "If
you already have AIDS, why bother to take these drugs — it's
too late for them to do any good, isn't it?" — a big
red flag about addressing educational gaps. I addressed this in
the few minutes that I had left, as did one of the peers, but I
don't feel it was adequate. It's difficult, because when I have
a group of peers who have life experience to share, the last thing
I want to do is create the impression that my information is more
valid than their life experiences. The only unpleasant thing that
happened was a fight over a bus pass with a latecomer.
Challenge House
Another challenging workshop at Challenge House. A client who later
did a one-on-one with me was disruptive, and people kept joining
the group and asking questions about themselves, so I had to stress
again and again that I was happy to stay and do individual meetings
after the workshop. It was extremely hard to stay focused on the
topic. I'm not sure what all the situations are with people who
go to this group are as far as mental health and active drug use
go, but again, it was pretty challenging.
The things that really went over well with the groups were:
- Mentioning that everyone's immune system is different, and
although there's lots of information about HIV, not all of it
may be as applicable to one individual as another.
- Acknowledging that although we were going to be discussing
medical information, there's so much more to a person than his
or her medical issues.
Then, just as we were about to break, one of the peer educators
loudly stated that neuropathy is just like arthritis and that you
just have to tough it out. I was stunned, but then I got the signal
to end the workshop so I didn't have time to really address this
problem. I wish I'd handled it better.
| Short
Course Notes on HIV drugs in development
Setback for Validation of IL-2
Chiron Corporation has decided to stop funding its 2000-person
SILCAAT trial of IL-2, a potential therapy for increasing
CD4 counts in people with HIV. The SILCAAT trial has been
costing Chiron $20 million a year. With the company's patents
beginning to expire in 2006, Chiron's president explained
that stopping the trial was a business decision. Although
the trial had been accumulating primary events (AIDS defining
events) at the expected rate, its proposed conclusion in 2007
was no longer felt to be financially tenable.
During a planned interim analysis last spring, the trial's
data and safety monitoring board observed CD4 count increases
as expected. However, they saw no change in viral load, a
secondary endpoint. Although no change in VL would be expected
from the action of IL-2, apparently the company had suspended
disbelief in a kind of a gamble. Evidence of an ability to
reduce viral load would have greatly speeded FDA approval
of IL-2, which will otherwise require the continued slow accumulation
of clinical events to demonstrate a benefit.
Clifford Lane, of the National Institutes of Health, representing
the SILCAAT Scientific Committee, is formulating an alternate
plan to keep the trial going for about $5M per year. This
would involve fewer endpoint collections and sharing resources
with another large IL-2 trial called ESPRIT. Chiron says they
will consider this plan and make a final decision after consultation
with the FDA.
How High the Sky?
Hoffmann-La Roche is set to launch two promising new treatments
in the next few months for people living with HIV and/or hepatitis
C (HCV). T-20 (Fuzeon) is the first of a new class of anti-HIV
drugs called fusion inhibitors. The other new drug, called
Pegasys, is an important improvement over the standard interferon
used to treat HCV infection.
The price of Pegasys has already been announced at roughly
$14,000 per year. This drug must be used in combination with
another antiviral drug, ribaviran, which may boost the cost
an additional $14,000 to $21,000 per year depending on dosage.
The price of Roche's T-20 is almost certain to be priced somewhere
above $10,000 per year with some estimates reaching a figure
as high as $17,000.
These prices will have a tremendous impact on public health
programs facing fiscal problems, such as the AIDS Drug Assistance
Program (ADAP) and Medicaid, which are already struggling
to meet basic needs.
Project Inform's Treatment Action Network is calling for
individuals to contact Roche directly with personal letters:
"If the proposed costs of these drugs will affect your
ability to access either one, let Roche CEO, George Abercrombie,
know it. It is important that he hear from those who will
be impacted by his decision. Your letter will also let him
know that people are paying attention and care enough about
this issue to take action."
Write to:
Mr. George Abercrombie, President and CEO
Hoffmann-La Roche
340 Kingsland Street, Building 85, 8th Floor
Nutley, NJ 07110
|
Global Treatment Update By
Gregg Gonsalves
Cold Feet and Timid Steps Forward
The World Health Organization announced a goal of treating three
million people in the developing world with antiretroviral therapy
by 2005. As 2002 comes to a close, plans for reaching this goal
proceed at a snail's pace. Sometime in December the UN agencies
and their partners will announce the formation of The International
HIV Treatment Access Coalition (ITAC), which is supposed to be the
vehicle for coordinating the effort to expand access to ART. GMHC
and others have been pushing the UN agencies working on scaling-up
ART to do more and come up with a "roadmap" for scale-up
for World AIDS Day 2002. This roadmap would have several main features:
- A discussion of the international infrastructures needed for
scale-up and a commitment to fund and create these components.
If we are to scale-up treatment, we cannot expect procurement,
human resources development, resource mobilization, technical
assistance, laboratory testing, monitoring and evaluation, to
be done on a laissez-faire, country-by-country basis. The Gobal
Fund is realizing this fact for its own grantee countries and
starting to think about some trans-national mechanisms to facilitate
and coordinate some of these activities.
- A discussion of some standardized planning, budgeting and implementation
tools for national ART programs and a commitment to creating these
tools. These could include training manuals, operational, technical,
planning and budgeting guidelines, and templates for setting up
recording and reporting systems.
- A timeline and milestones for accomplishment of these international
and national level components.
The establishment of ITAC is not a substitute for developing this
roadmap as soon as possible. Right now, the main obstacle to hammering
out a plan for scale-up is a failure of nerve and leadership by
all involved, from the UN organizations, to development agencies
and governments in the North, to the mainstream NGOs. Once there
is a real plan for scale-up, these institutions will have no excuse
but to move forward with expanding access to ART, with all its risks
and challenges. It's as if they've been chased to the edge of a
cliff and have suddenly frozen in fear of the leap they have to
make to get safely to the other side. No one denies the true enormity
of what is being proposed or the difficulties facing us, but the
true risk here is for the millions of people living with HIV around
the world who face certain death unless action begins now.
$100 Million for India
The Melinda and Bill Gates Foundation announced a new initiative
to slow the transmission of HIV in India, raise awareness and fight
stigma. In particular, the program will focus on mobile populations
such as truck drivers and migrant laborers who are considered to
be at higher risk of acquiring and spreading HIV/AIDS. The grant,
however, makes no provision for treating the estimated 4 million
people in India already infected.
Focusing on "containment" of HIV within targeted communities,
some critics say, implies a lack of concern for the people of those
communities. They fear that this persistent blind spot means that
such prevention-only approaches are doomed to fail.
The proposals to address stigma in India have met a better reception.
In a country where discrimination is a way of life, breaking through
the fear and denial will be a major challenge.
Tenofovir? You're Soaking in it!
In a separate announcement, the Gates Foundation said it will fund
a proposed multinational clinical trial to evaluate the use of tenofovir
as a novel approach to HIV prevention in sexually active adults
in resource-poor countries with high HIV incidence. The study will
assess the acceptability of, and adherence to, a regimen of one
tenofovir tablet taken once daily as prophylaxis. If shown to be
safe and effective in this setting, tenofovir could be adopted as
an HIV prevention method equally accessible by men or women.
The ethical implications of providing antiretroviral drug to uninfected
people while dying people go without and the impact of pre-exposure
prophylaxis on the behavior of trial participants deserve further
discussion.
Reclaiming Individual
and Community Power By James Learned
Long-time AIDS activists, advocates and educators have witnessed
and often contributed to a subtle but significant shift in the way
that people living with HIV/AIDS (PLWHAs) are viewed. In the early
days of the epidemic, as a reaction to the term "victim,"
people with AIDS established a self-empowerment movement by fighting
to be referred to as just that — people. These days, even
the most sensitive service providers and clinicians are likely to
refer to PLWHAs as clients or patients. The difference isn't just
semantic. The possessive "my client" or "my patient"
implies ownership. It informs the way that power is distributed
and the degree to which each individual is allowed to participate
in the course of his or her own care.
Providing community-based treatment education is, by its very nature,
a somewhat subversive act. Historically, discussion of medical information
has been in the domain of doctors and other healthcare providers.
As lay people — those of us without formal medical training
— became empowered to offer each other information about biology,
disease progression, medication, treatment strategy, and even nutrition
and alternative therapies, it has threatened many providers, public
health officials, and even some of our peers. Although many clinicians
welcomed and understood community-based treatment education as an
integral part of healthcare — and healthcare as an integral
part of life — others were uncomfortable with what they felt
was an usurpation of their authority.
After about 1996, when combination therapy began to result in dramatic
drops in opportunistic infections and deaths, many AIDS service
organizations started to develop formal treatment education programs
designed to help their clients sort through the information and
make informed treatment decisions. Funding soon became available
from pharmaceutical and government sources, and many, perhaps most,
of these treatment education efforts turned into well-intentioned
treatment adherence programs. Before long, the focus of many community-based
programs became compliance, often at the expense of a respect for
the person that had been central to the PLWHA self-empowerment movement.
Helping people on treatment develop adherence strategies is important,
of course, but an individual is more than the drugs he or she takes.
This reversal in the balance of power continues. Community-based
organizations are supposed to serve people with HIV, not the interests
of the pharmaceutical industry, the healthcare system or any other
authoritative body. Yet sadly, many organizations increasingly infantilize
positive clients, treating them like dangerous children who need
protection from medical information that could be upsetting or confusing.
At some infectious disease clinics, medical providers on staff provide
all treatment education — community educators are no longer
welcome. Client workshops are often conducted in busy cafeterias,
full of distractions, or in windowless rooms without chairs or fresh
air. The disrespect is astonishing. There's a pervasive and unsettling
assumption that PLWHAs are incapable of understanding treatment
information and making informed decisions. This may be purposeful.
Ignorant clients are, after all, easy clients.
This is where the committed treatment educator comes in. Effective
treatment educators recognize the whole person. Those of us working
and volunteering at the community level can offer true help to people
who are confronted by the complexities of HIV treatment decision-making
by allowing people to acknowledge and discuss the complicated emotional
issues that underlie treatment decisions. Through ongoing examination
of available data, we offer individuals a supportive space where
they can explore their fears, beliefs and understanding of HIV,
the medications, and the healthcare system.
Many researchers, medical providers, and even some government officials
understand and support the PLWHA self-empowerment movement. They
understand there's plenty of power to go around. They recognize
that effective community-based treatment education offers people
the tools they need to negotiate the healthcare system, promote
their own best interest and gain the power to make informed treatment
decisions.
PLWHA self-empowerment has become an overused and much-appropriated
phrase. But the power to regain its original, bold meaning is ours.
True commitment to community-based treatment education is part of
that power.
James Learned is Director of Treatment Education at ACRIA and
Editor of ACRIA Update.
Contents | AIDS
Glossary |
Past Issues
© 2003 Gay Men's Health Crisis
|
home 
