The Aids cause
is no longer a fringe movement. It has become mainstream. The cause now belongs
to governments, world leaders and corporate people. From a marginalised movement
championed by gay activists in America, it has become a multibillion dollar
industry supporting research institutions, governments, NGOs and
pharmaceuticals.
This year’s
International Aids Conference held from July 11 to July 16 in Bangkok was no
different. It was a reflection of how huge and how rich the Aids industry has
become.
The organiser
paraded the record number of participants and abstracts received as if figures
reflected the conference’s success. A total of 17,000 delegates and 3,000
journalists descended on Bangkok for the biennial gala which costs US$17 million
of which almost 10,000 participants paid US$1,000 to get in.
However, the
organiser - Stolkholm-based International Aids Society - said its theme was an
attempt to bring back the focus on people. Access for all is to provide access
of treatment and prevention services to all infected people and access to
resources to scientists, community workers and leaders in the public and private
sectors.
But critical questions, as Chief Rapporteur of Clinical Research, Treatment and
CareBernard Hirschel asked
“Access to what, to whom, by whom and at what costs and consequences?” were
not addressed.After 20 years
living with HIV/Aids, access to treatment invariably means access to anti-retrovirals
(ARVs), the standard drug for Aids, of which 93 percent living with HIV/Aids
have no access to due to high pricing and lack of public health infrastructure.
Even if the question of access is resolved, ARVs are not cures, but more like
stopgap measures. They are also highly toxic and users develop resistance to it.
In America, as many as 30 percent have resistant strains in them. Free ARVs do
not translate to free treatment as the costs of monitoring, treatment of side
effects, not to mention the costs of second line drugs when the viral strain
develops resistance to first line drugs. These are hidden costs that must be
factored into ARVs delivery.
There are no breakthrough on drugs and vaccines recognised at the conference.
Although vaccines have the potential to wipe out the pandemic, global investment
in vaccine research has been estimated at just under US$500 million a year, a
tiny fraction of which goes into drug research.
Are there no alternative cheaper and safer prevention and treatments methods? Or
are they excluded from the conference’s agenda?
Affordable,
effective treatments excluded
A look at the conference abstract revealed that effective, affordable and safe
treatments but not sponsored by pharmaceuticals were excluded. For instance,
multivitamin therapies, nutrition and diet regiments, selenium combination
therapies and treatments using traditional herbs that have proven to be
effective, such as Metrafaids produced in Senegal.
These marginalised studies are undergoing research not only with little support
from governments and international funders, but continually face obstacles in
getting their products recognised. Some, for instance, a Thai-based oral
therapeutic vaccine with prophylactive potential, the V1 Immunitor, has been
highlighted in peer reviewed journals with very promising results, such as
Vaccine, Immunology and Journal of Virology.
These journals publish only scientifically evaluated findings according to
validated protocols. However, their abstracts for presentation at the conference
were rejected again as they were two years ago in Barcelona.
Dr Laurent Hiffler of the
International Project for Affordable Therapy for HIV (Europe) said because these
treatments are cheap and affordable, they have been largely ignored by
governments and conferences such as this.
“There is vested interest and the element of profit over the healthcare of
people who are in need,” he said.
The IAS acknowledge that it is the big pharmaceutical companies that have the
money to fund their projects. The conference programme named GlaxoSmithKline,
Gilead, Pfizer, Roche, Abbott Virology, Bristol-Myers Squib and MSD as
“preferred sponsors” of the conference.
“What do you tell doctors who have people queuing up for highly active
antiretrovirals (HAART) and there is none available. There must be something
between HAART and palliative care. Treatments that yield benefits to patients
must be given the same amount of attention and funding as ARVs,” he said
If the UNAIDS ‘3 by 5' aim of providing treatment for three million by 2005
were to be realised, there must be greater commitment to source out safe,
affordable and effective treatment, other than ARVs. Aids activists who protest
for multinational pharmaceutical companies to lower drug prices and demand for
generic drugs are all narrowly focused on access to the 20 available ARV drugs
in the world, manufactured by Western-based pharmaceuticals. Perhaps they should
turn their attention to seeking out alternative treatments and press for
affordable therapies to be recognised and supported.
Questioning science
The International Aids conference was one of those few Aids initiative that
linked community and science together in one conference. The premise was good.
The science and research into HIV and Aids should not be divorced from the
concerns of community work, social activism and public policy.
But how effective is such an arrangement without a real understanding of the
basic questions about science? From my observation, other than press
announcements of scientific progress, there is hardly any intermingling between
the two sectors.
Science speaks in a language largely incomprehensible to most people. Community
workers, activists and policymakers leave drug and vaccine research to the
experts while they focus on raising awareness and prevention. Most scientists
look down on social and community activism as a waste of time, thinking that
community work is merely driven by rhetoric and vacuous activities while they
are doing the real work.
Yet, more than ever, there needs to be more scrutiny on what scientists are
doing. Are we going on the right path? Are the types of scientific research that
are conducted being done only because they were funded by promise of big returns
rather than real science?
Dr MSekagya, Prometra (Uganda)
representative who was co-charing the only session for traditional medicines,
asked some provocative questions:When
does science begins? At what point does practice become science? What do we mean
by evidence? Whose philosophical approach are we using when we define efficacy
and evidence?
Sekagya said conventional Western-based science assumes a universality defined
by a paradigm of knowledge that is not open to other forms of knowledge.
The definitions used for best treatments during the rapporteur session is
telling. Best treatments for HIV/Aids, according to the Chief Rapporteur are
measured by a drug treatment that could bring down viral load by 50 percent in
six months with low toxicity, long term drug efficacy without resistance, and
long term survival of the patient.
What about the patient’s quality of life? What happens to the patient as a
thinking, feeling and living person? Has the patient been reduced to viral load,
drug efficacy and survival rate?
It is no wonder that the Global Network of People Living with HIV/Aids (GNP+)
complained at the conference, that HIV positive people are referred to as an
abstraction and not as a person.
In conventional science, good data are ones supported by evidence in numbers.
Fair enough, but how does one quantify a patient saying that he can go back to
work, or that his skin infections have cleared and he can join society again
without being stigmatized because he “looks like an Aids patient”?
Patient-specific evidence
are often brushed away as anecdotal evidence. Therapies that are
patient-specific, that employ different kinds of treatments according to patient
needs cannot be subjected to double-blind placebo trials. These controlled
trials are good for drugs or very specific kinds of treatments that assume every
patient is the same.
Aids is an autoimmune disease that manifests itself into so many life
threatening symptoms, where diet, nutrition, lifestyle and behaviour are
variables that affect the progression of the disease. This science that
depersonalize patients in exchange for “scientific rigor” is not necessarily
the best way to find the best treatment for Aids. A science with a more human
face and patient based must be explored to test treatment efficacy.
This year 10,000 abstracts were submitted and 8,641 were accepted for
presentation. The numbers are huge, but they do not necessarily represent a wide
range of diversity. In treatments, ARVs continue to dominate, while other more
affordable treatments are neglected. The criteria for successful acceptance and
reasons for rejection must be revealed for public scrutiny.
Community rapporteur Shawn Mellor called for a more diverse representation of
ideas and experiences for the next conference in 2006 in Toronto. “The review
committee for abstracts needs to be renewed to represent the diversities from
the ground.”