Sunday, July 04, 2004

AIDS - The "Lucrative" Disease

by Ong Ju Lin

The Aids cause is no longer a fringe movement. It has become mainstream. The cause now belongs to governments, world leaders and corporations. 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 is a reflection of how rich and powerful 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.

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 Care Bernard 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. Based on chemotherapy drugs to treat cancer, they are highly toxic and users develop resistance to it. In America, as many as 30 percent have resistant strains in them.

Furthermore, 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 must be factored in. These are hidden costs that invariably gets lost in ARVs delivery.

This year, there are no breakthrough on drugs and vaccines recognised at the conference. Although vaccines have the potential to wipe out the pandemic, global private efforts in vaccine research has been estimated at USD$100 million a year; this in contrast with investments in drug research that run into billions with a sales return of an estimated USD$ 5 billion.

According to investigative journalist Jon Cohen, big pharmas were “avoiding vaccines like the plague” because they take a longer time to develop, rasied serious liability issues and offer a paltry profit margin compared to drugs.

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 developed 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 such as Vaccine and Immunology with very promising results.

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

Questioning science

The International Aids Conference was one of those few Aids initiative that linked community and science together in one conference. The premise is good. 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 little 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 the promise of big returns rather than the goal of eradicating the disease?

Dr Yahaya Sekagya, 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 depersonalise 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 therapies must be explored to measure treatment efficacy.

This year 10,000 abstracts were submitted and 8,641 were accepted for presentation. The numbers are large, 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.”

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.

It is time they turn their attention to seek out alternative treatments and push for affordable therapies to be recognised and supported.

ONG JU LIN was reporting on the conference from Bangkok for Malaysiakini. Published in http://www.malaysiakini.com/ on Jul 20, 2004 12:49pm

7 comments:

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OrientalJo said...

A well-written piece. I have a few friends who are HIV+, by nature of being part of a well-linked network involving Malaysian-Care, have good access to government-sponsored drugs for HIV-patients.

I find most of them (those who registered with the govt-sponsored program) are like guinea pigs when it comes to adopting certain types of drugs. From their original skin colour, their skin my friends have unwittingly morph into 'blackies'- Chinese with Indian skin color.

I wonder if this is an unavoidable side-effect and if our govt. has chosen to dispense these drugs in a careful and well-planned manner?

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