| Email response from Richard Stern, Director, Agua Buena Human Rights Association on Working Meeting on an International Action Plan on Scaling Up Access to HIV Care Geneva · October 2002 | ||
22-10-02 I congratulate Mark Harrington for his notes on the meeting held in Geneva October 1 and 2. It is always difficult to comprehend from reports the inner workings of a discussion involving many people, and I think Mark has done an admirable job. I have worked in the Treatment Access Field for six years. The advantage that my experience and feedback provides is that I have actively participated in anti-retroviral "scaling up" in ten countries using a variety of methodologies during these six years, with some very successful results. The disadvantage of my experience, and consequently, of my feedback is that I have worked in Central and, more recently, in South American countries that have much smaller populations in need of ARVs, than those in Africa, and Asia and these are countries which, in most cases, have significantly higher Per Capita income, than those countries which the Alliance may be prioritizing. So I am not prepared to really evaluate needs in Africa and Asia...but I feel comfortable than the comments I am forwarding here apply to where I have worked and may have some relevance to other parts of the world. Still, from what I have seen, the Global Access Alliance needs a greater emphasis on the individual decision making process, and ways to influence it, of individual governments which ultimately are those who will make the commitment to treatment, possibly pay all of the bill or portions of it, and need to assure sustainability as well as quality of care..... I think, if there is to be a Global Access Alliance, it would be great to involve governments not just as targets (although they are the targets) but to actually put government officials on the list of potential partners, which includes 16 primary topics with corresponding partners assigned to each topic according to Mark's summary. If this were to occur if would have to be meaningful, not just symbolic, but if people are part of the development of a process, than they will identify with it, and be more likely to have a favorable reaction.....I don't know about the logistics and costs of encouraging governments to assign key people (for example from the National AIDS programs) as "partners" in a Global Alliance, but I think that it might be a possibility worth looking at. I think more emphasis is needed in the Alliance on what the processes are that cause governments to make decisions to involve themselves in a human rights focused/pro treatment approach. In the ten countries I have worked in this involves a complicated combination of factors including, and not limited to (It is important to mention that each country is different and every time there is an election, there may be a need for a partial or complete change of strategy) the following:
Now we can come to the problem that the International Agencies of Cooperation such as UNAIDS and WHO are much more in the role of consultants and educators and cannot be active advocates "against" governments which are unwilling to change their policies or prioritize treatment access. Thus there is a continuing necessity for the Alliance to balance its wish for congenial cooperation with governments, with the need for treatment activism by experienced advocates, often People Living with AIDS, who are stakeholders, and if the Alliance does not find a way to support and involve this sector, again, I feel that it will not address the entire problem. Without going into detail, I will say that 90 percent of treatment access which has occurred in the countries in which I work would not have occurred if it were not for pressure from the activist community, however, small and marginalized it might be in each of the countries. My own specialty, in fact, is mobilization of these communities toward meaningful strategic actions, given the individual cultural, economic and social context of each country and meaningful gains have been achieved in this way in Costa Rica, El Salvador, Panama, Honduras, and now hopefully Ecuador, Peru and Bolivia. Perhaps the Alliance can hardly expect to negotiate with, train, and support a government on the one hand, and then provide support to those who would sue the same government in a court of law, on the other hand....but in spite of its apparent impossibility, it is an approach that is needed. Partners must be brought in from the activist communities in each region of the world that is targeted, because they are the people who will ultimately fulfill the role of supervising and evaluating the results in terms of their impact on the AIDS affected communities. Donor sources, WHO, UNAIDS, and high profile conventional, often well funded NGO's have their role and relationship with government, but they have NOT gotten the job done with respect to treatment access, and this needs to be recognized. Topic number six, related to Advocacy, should include other partners besides UNAIDS and WHO...representatives from Grass Roots communities of AIDS activists with a track record of successes, who can adapt to being part of the "mainstream," but continue to act effectively based on their abilities. The involvement of such "activists" also assures the meaningful involvement of People with AIDS in their own treatment, saving tremendously on costs and energy. For example People with AIDS in some countries where I work have formed their own support groups focused on adherence issues, side effects, etc which is extremely valuable for obvious reasons. I go back to the differences between regions and countries. The structure of a meaningful alliance if this Alliance is to be so, must be regional and individualized. The solutions for Panama are not going to be the same as for India. The solutions for South Africa are not the same as for China. A meaningful infrastructure would need to include a small number of experts on the current actual situation in each region. I realize that WHO/UNAIDS purport to have these experts in place already, although from what I have seen, this is a process which must continue to evolve, as a result of the new priorities in relation to Treatment Access which is occurring. But, from whatever source they come, the Alliance must recognize how different the Treatment Access approach needs to be in different country contexts, and come up with a plan that recognizes differences as well as similarities. I question if there is one "tool-kit," even if it is somewhat technical that really will fit the needs of all the countries. Tool-kits and other interventions must be strategically delivered to countries according to where they are at. A greater emphasis must take place on the need for using UNGASS as a tool toward encouraging countries to become involved in the Alliance. A good start would be to send each country a copy of the statement made by its own representative at UNGASS as a reminder (this may sound a bit sarcastic, but, in fact, I think UNGASS could be a fine tool for encouraging a human rights based approach with includes treatment access, if it were being actively followed up on, which I don't see happening at all) I suspect that the Alliance must start to use the media more effectively if it is going to make press announcement on December 1st or whenever about massive scale up. It is of no use to continue to mention the figure of "three million." It would be much more useful to talk about specifics and to refer to specific numbers of estimates of people who need ARV therapy at this moment in a given country. Large numbers are potentially intimidating to donor sources and the public, I am afraid, is both bored and used to hearing about 30 million people who have AIDS....Also I see the figure of three million as a set up for a framework that is programmed to fail as time passes and numbers may fall far short. The real numbers put things in a workable context, and will put the breaks on the sensationalism of the press which has outlived its usefulness with respect to the epidemic. We now need journalists who can write intelligent, fact driven articles about what really are some concrete goals and solutions. I realize this sounds radical....but in a press release why not provide a list of countries with a targeted number of people for each country and forget about the huge numbers for the moment at least. I realize that strategically the large numbers are designed to shake people up and mobilize resources, but again, I think it has outlived its usefulness. Let the Alliance talk intelligently in its public announcements about small, achievable goals, which can be determined and leave the sensationalism, which does have a role, to those who are experts in sensationalism. My own experience and bias is that the press reporting of Brazil's definitely worthy and commendable successes has so overshadowed that fact that 75% of people in Latin America still do not have ARV access, that nobody really realizes this. Brazil should be congratulated, but as Mark Harrington said, it is not a typical case scenario even for Latin America, let alone for the rest of the world. I wish I would read something about AIDS in Ecuador....I wish Brazil would have been willing to sell its generically produced medications at cost to neighboring countries instead of offering "technology transfer" when everybody knows that the neighboring countries are far too small to gear up to do local generic production....I have great respect for Brazil's National AIDS program, it is by far the best in this region...but it goes back to the same point....it has taken the media heat off of those countries where it would be better to have focused more attention as a way of getting medications to those who don't have them. Regarding the topic of "Drug Procurement supply chain," I am hardly an expert, but I see this as a key topic....prices, availability, patent laws, distribution are issues that need to be analyzed (as WHO has been doing) but, as I have indicated, the information must be presented to target audiences who have the capability to act meaningfully on the information. I cannot figure out, more than a year after CIPLA's price announcement, and nearly a year since its "pre-qualification" by WHO, why there is no national government that I know of in Latin America buying directly from CIPLA at its announced prices. Instead they are buying from multi-nationals and paying prices five times higher for identical drugs in countries where are there are no patents on anti-retrovirals. But this is part of an information/capacity gap, that WHO and the partner Agencies (UNAIDS, PNUD etc) have not been able to fulfill, so there is a role for the Alliance here. One must recognize that some governments are too entrenched in their usual way of doing things to take advantage of better prices that are available, but that is no reason not to try to change this....By the way, when CIPLA products are sold by a distributor (as in Peru and Honduras) the prices wind up being four times higher than CIPLA's announced price if the product is purchased directly from India...this should also be looked at.... In my opinion the obstacle is not prices and in many countries is not even patents, and at this stage of the game, is not even the objections of multi-national companies to the emergence of strong competition from "qualified" generic producers, but is that the information about prices is not getting to the decision makers who work in the pharmaceutical acquisition process in governments. Of course those who work in these departments need the commitment of the Health Ministry and other decision makers that the government will indeed buy at the best available prices.... Almost everything I have stated in these comments gets back to knowledgeable commitment by National governments, as the key in going from theory to practice in terms of actually getting pills to people. If this intelligent commitment exists then I think the other pieces of the puzzle will begin to fall into place more easily. Governments will know where and how to solicit financial support from donor sources, who will, in turn, be more likely to trust that governments will utilize the resources intelligently. The greatest potential weakness of the Global Fund, in my opinion, is the failure to assure that the capacity of the governments to put the funds to good use is there and to mandate technical support by qualified, culturally sensitive, technical advisors in making sure that the funds will be well utilized. This had to be part of the Global Fund budget, even if it were to mean devoting up to ten or fifteen percent of the total donations to this kind of technical support and monitoring, which WHO and its partners just don't the infrastructure to do adequately. Sincerely, Richard Stern, Director |
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