Data presented at the XIV International AIDS Conference called to mind similarities between the disease's effect on the individual and the pandemic's effect on global society. African human rights activist Graça Machel pointed out this similarity in her plenary address to conference participants, assembled this year in Barcelona.
"HIV/AIDS has proven itself to be an incredibly aggressive and comprehensive virus," Machel said. "By undermining the immune system, the virus effectively attacks the whole body. Then there is the social stigma attached to HIV/AIDS, the economic fallout from subsequent illness, and the lack of access to treatment and care that might minimize the effects of the virus. It attacks the human, the individual. And it attacks physically, emotionally, spiritually, in a very aggressive manner. And these individual effects and impacts are multiplied in our communities, our countries and our regions."
As many participants at Barcelona commented, it seems that both a medical solution to HIV disease and a coordinated public policy program that could stem the global tide of infection and death are always just out of reach.
Siciliano attempted to present a positive side to this grim news, however. "First, [this] fact is as powerful an argument for preventive efforts as we will ever find," he said. "And I believe that [highly active antiretroviral therapy (HAART)] can completely arrest virus evolution. In principle, this makes it possible to offer everyone with HIV infection the chance for a normal life."
Even the good news from medical researchers, however, turned bittersweet in light of information provided by epidemiologists on the spread of the disease and the very low numbers of HIV-infected people actually receiving the effective treatment antiretroviral drugs have made possible. First, the rate of infection exceeded predictions; more people than expected are infected in 2002. Second, in the developing world, where 95 percent of people living with HIV/AIDS live, fewer than 10 percent have access at all to antiretroviral drugs.
"It is now clear that the AIDS epidemic is still in its early stages," said Peter Piot, Executive Director of the Joint United Nations Programme on HIV/AIDS (UNAIDS), in the speech he made to open the conference. "And let's be equally clear: our fight back is at an even earlier stage." These were strong words and a challenge indeed to redouble our efforts.
But Piot lamented that no effort, even when largely successful, seemed to be quite enough. There are now many more mother-to-child transmission (MTCT) programs operating than there were two years ago, he reported. Nonetheless, the number of HIV-infected women who transmit the disease to their children remains quite high. "Why are three-quarters of a million babies born with HIV a year, when it is eminently preventable? Why have we failed to stop the dramatic expansion of HIV?"
In fact, there is no global consensus that healthcare is a human right. Most of the featured speakers in this relatively liberal European setting, however, spoke as if there were such a universal understanding (See "Spain as Host" sidebar). José María Mediluce, Chairman of the Green European Solidarity Foundation, stated in his opening ceremony speech that, "The fight against AIDS is a fight for human rights. And, among others, the rights to healthcare, sanitation, clean water, and generic medicines are basic to the rights of people affected by AIDS and all are part of the same reality."
Bill Clinton and Nelson Mandela, former presidents of the United States and the Republic of South Africa, respectively, each devoted considerable time in their addresses during the closing ceremonies of the conference to the issue of discrimination against people living with HIV/AIDS. "Many people who have AIDS are not killed by the disease itself. They are killed by the stigma suffered by everyone who has HIV/AIDS," said Mandela. He offered a moving story of his personal battle against the discrimination associated with HIV, describing how, while President, he traveled through the country inviting children with HIV/AIDS and physical disabilities to dine with him. "The fact that the President of the country is sitting at the table with children with HIV/AIDS and those who are disabled, makes the parents less ashamed of their children," he said. He called on other world leaders to lead by such actions.
Clinton, in turn, cited a Human Rights Watch report that documented police brutality against AIDS activists in India, and said, "The government must stop this. And not just in India, but everywhere." He pointed to former U.S. Senator Jesse Helms -- who recently stated that instead of opposing AIDS funding during his tenure, he wished he had advocated for it -- as a hopeful example that "anyone can have a change of heart."
|Spain as Conference Host Encourages Focus on Latin America and Impact of Injection Drug Use|
At the opening ceremony of the XIV International AIDS Conference in Barcelona, Conference Co-Chair Jordi Casabona gave a special welcome to participants from Latin America. Many times during the conference plenaries, Spanish hosts and dignitaries thanked attendees from the Spanish-speaking Americas for their participation. Casabona noted that the Barcelona conference was unique in its ability to welcome that delegation: "This is the first International AIDS Conference in a Spanish-speaking country."
Casabona also said in his opening remarks, "You will see that the city is full of other conference-related activities." A representative from RED 2002, a coalition of Spanish, community-based, non-governmental organizations, joined Casabona in the opening lineup, underscoring the participation of local AIDS organizations in the conference and related events. The mayor of Barcelona, Juan Klos, gave a trilingual welcome to participants (in Catalan, Spanish, and English), and boasted of Barcelona's longstanding commitment to public health and healthcare for the disadvantaged, and its interest in global activism on these issues and others, including equality for women. His speech was indicative of the influence of the host city on the conference: Barcelona is a liberal city with a strong socialist tradition, and it welcomed the conference and helped set the tone for open dialogue about the complex social issues surrounding HIV/AIDS.
The Spanish location also afforded an opportunity to highlight the impact of injection drug use on the epidemic. In the European setting, with a general level of primary healthcare available to the population, the continuing epidemic among injecting drug users (IDUs) exemplified how the disease continues to thrive among people who face societal discrimination, even in relatively affluent settings. A poster cited Spain as having the highest incidence of IDU-related HIV infection in Europe [WePeG6937]. The poster showcased the work of Medicos del Mundo, a harm reduction program in Madrid and six other Spanish communities. They described their population as 85 percent male, with a mean age of 31. Mean age of first injection was 20. Eighty percent had used heroin in the last month, with 59 percent injecting. Seventy-six percent had used cocaine in the last month, with 96 percent injecting. Poster authors stated that "the users of our services are more discriminated against now than 10 years ago."
At a press conference, one of the questions put to Richard Feachem, the newly-appointed Executive Director of the Global Fund to Fight AIDS, Tuberculosis, and Malaria, was whether the fund was going to consider funding needle exchange programs, and how it would interact with governments that did not want those programs. He said, "The Global Fund is already funding needle exchange programs. Yes, we're doing it, we will continue to do it." He went on to state that, beyond a system of country-specific planning processes and negotiations, the Global Fund is limited in that it can only make the funds available as a means of influencing sovereign states.
Much of the contention surrounding patent rights for antiretroviral medications, however, remained unvoiced at the conference. Many speakers made impassioned arguments for easing of patent restrictions, but those agreeing with the pharmaceutical industry and with concerns over inadequate infrastructure and risks of drug resistance, seemed more hesitant to make their opinions heard in conference plenaries or oral sessions, fearing the ire of activists and patient groups.
Among drug access advocates, many at the Barcelona conference held up Brazil and Thailand, with their local manufacturing programs for pharmaceuticals, as models of appropriate reform. Paolo Teixeira, Director of the Brazilian STD/AIDS Program, described his country's strategy of providing antiretroviral treatment in conjunction with a nationwide prevention program as more or less an obvious action. "There is no 'Brazilian Model,'" he told a plenary audience. "What we have been doing is to put into practice principles that have long been recognized by the international community. At their very core is the Universal Declaration of Human Rights, adopted more than 54 years ago." Brazil has documented significant reductions in HIV/AIDS incidence, including new cases, as well as a reduction in the number of deaths from AIDS.
"In Brazil," Teixeira added, "the average cost for patient per year in antiretroviral therapy decreased by half in the last years. This reduction occurred because of a combination of two concomitant factors. First, investments made by the Ministry of Health to set up domestic national laboratories. Currently, the Brazilian Ministry of Health distributes 15 antiretroviral drugs, of which eight are locally produced. Second: the effective negotiation, based on tiered or differentiated prices, with drug companies. ... National production under compulsory licensing has been a strong argument to push these companies to the negotiation table."
Teixeira concluded his remarks by reiterating Brazil's offer of technical assistance to other countries wishing to institute local production. However, he expressed Brazil's wish not to become an exporter of generic medications, saying that would "fundamentally alter the mission which the Brazilian public laboratories serve," namely, that of utilizing local manufacturing to regulate domestic prices.
At an oral session on strategies for lowering treatment prices, which drew an attentive and vocal audience, K. Kraisintu presented the results of Thailand's manufacturing of generic medications. Thailand's Governmental Pharmaceutical Organization (GPO) produces more than 300 items, she said, including antiretroviral medications and drugs to treat opportunistic infections [MoOrG1038]. The Thai GPO introduced a lamivudine (3TC)/nevirapine (NVP)/stavudine (d4T) co-formulated drug in April 2002. "The reasons for doing this," she said, "are that we wanted to simplify treatment, we wanted to increase compliance, we wanted to reduce the resistance, and, most of all, we wanted to reduce the cost of treatment." Participant discussion included a comment that drugs are not the only patents driving treatment costs up. Kraisintu agreed that CD4 monitoring was a cost issue for her country, but that they planned to internally manufacture that technology as well: "Wait and see. I will make it lower!"
Presenters at the treatment pricing strategies session focused on local pharmaceutical production of essential anti-HIV medications in low-income countries, patent restrictions, and standardized price negotiations. AIDS drug activist Jamie Love advocated the creation of a "non-voluntary patent pool for interventions that address essential public health needs." Love would include on this list the most effective known antiretroviral treatments for HIV. During the same session, the issue of inflation of drug prices at the local retail level was raised by an audience member, who cited the doubling and tripling of prices at local pharmacies in southern Africa to demonstrate that prices charged by drug manufacturers were not the only factors driving up cost. Love agreed, saying that in Central America, as well, patents "are not really the issue," but that distribution systems increase drug costs in those countries.
At another session on the cost of drug access expansion, a South African study presented by Andrew Boulle on cost-effectiveness of antiretroviral treatment [TuOrG1248] was greeted with praise from a large audience, primarily composed of activists and economists. Boulle made two arguments to support his conclusion that the South African government could feasibly begin widespread provision of HAART in the near future. First, he noted that, in cost analyses, "HAART is often described as a uniform entity," and that the costs of different implementation scenarios were not taken into account. His analysis included variables such as provision of only one drug regimen option versus making available a second more costly option if the first failed; different staffing options in service delivery (e.g., employing allied health professionals for services that do not require a physician, such as counseling); and the use of generic medications.
Secondly, Boulle argued that determining the feasibility of supplying HAART need not reflect provision of treatment to all infected persons in a given country. The study authors pointed out that the numbers treated would be limited by human resources and other factors, just as all healthcare provision in poor countries is limited. "In resource-poor settings, there is implicit rationing anyway," he said. Moreover, Boulle suggested that if governments invest at least a portion of their HIV care expenditure in HAART, they will show commitment that might leverage resources from other players.
At a press conference in Barcelona, the International Association of Physicians in AIDS Care (IAPAC) announced two initiatives designed to address capacity issues in countries with limited resources. The Global AIDS Learning & Evaluation Network (GALEN), and the Joint HIV/AIDS Care Initiative (JHACI) will provide much needed medical education to HIV care providers and ensure the ability of clinicians in resource-limited countries to administer effective antiretroviral treatment as drugs are made available and scaled up. Both initiatives are driven by the very practical strategy to ensure that infrastructure concerns precede, or at least accompany, the introduction of antiretroviral drugs into settings that can ill-afford their mismanagement.
In further support of this strategy, and opening an oral session dedicated to the issues of capacity and policy prerequisites for antiretroviral access, Joseph Saba of Ireland advocated encouraging resource-challenged countries to establish sound policies that would enable them to effectively administer antiretroviral distribution. He pointed out that increasing capacity to provide antiretroviral treatment increases the capacity of the entire HIV care system and, indeed, the country's whole health-care system. He stated that he believed the lack of sound policies in many countries was a "lack of will" on the part of some governments, challenging them with the task at hand: "It is not very expensive to improve policy." He listed training guidelines, policies on pricing and procuring supply, and accounting mechanisms as examples of the types of measures he felt countries considering antiretroviral provision should prioritize.
Making specific country references were Kriengkrai Srithanaviboochai, who presented an example of capacity-building efforts being undertaken by the government of Thailand in preparation for implementation of HAART, at no out-of-pocket expense to the patient [TuOrG1246], and Paul Farmer, who presented a case study from Haiti. The process of integrating HAART into the current healthcare system in Thailand, as Srithanaviboochai told the audience, included active participation by community advisory boards. The advisory boards developed selection criteria, to determine which patients would receive the medications, and guidelines for distribution, ensuring continuous adequate supply at each site. A "focus person" was assigned at each of 54 participating hospitals, and each focus person led a HAART team that included a minimum of five specially trained professionals: a physician, a nurse, a pharmacist, an HIV counselor, and a lab technician.
Paul Farmer of Harvard Medical School related experiences of a rural study in Haiti, intended to demonstrate the feasibility of antiretroviral treatment in even the poorest of settings. "No one seems to have actually done such projects in the world's poorest communities, although HIV is now the leading cause of young-adult death in almost all of them. There's thus a lack of know-how regarding who should receive HAART, what the enrollment criteria would be, how to manage the drug supply, and how best to monitor therapy in resource-poor settings. There is much speculation but little experience in linking prevention to care in the poorest communities." Farmer said that recruiting major institutional donors for a treatment pilot project had been difficult.
This Haiti project, termed the "HIV Equity Initiative," complemented ongoing prevention efforts with "antiretroviral treatments for those patients in greatest need and who were soon to die, in our opinion, without these drugs," said Farmer. Ten to 12 percent of the over 2,000 HIV-infected patients examined in the clinic are now receiving antiretroviral treatment, and the project relies heavily on therapy methods borrowed from an earlier tuberculosis/HIV program, as well as on community health workers who deliver domiciliary care.
Farmer and colleagues concluded that antiretroviral treatment in rural Haiti was possible and effective, although Farmer stated that effectiveness was hard to measure using traditional evaluation criteria. "The gold standards for assessing efficacy of AIDS prevention and care are quite different, and both are largely beyond the reach of healthcare facilities in regions most affected by HIV. In Haiti or comparably poor countries in Africa, even university-affiliated projects would have as much or more difficulty measuring HIV incidence as they would measuring viral load." Farmer suggested biosocial measures of success, including patient outcomes (such as body weight) and chart review; reduced rates of hospitalization; and increased demand for voluntary counseling and testing.
In all, these various capacity-building initiatives were heralded as critical and irreplaceable elements in the strategy necessary to ensure that more positive news regarding treatment and survival rates would be possible two years from now at the XV International AIDS Conference in Bangkok.
|IAPAC Unveils New Initiatives at Barcelona Conference|
IAPAC's new capacity-building initiative, the Global AIDS Learning & Evaluation Network (GALEN), will provide training and certification of "HIV Care Specialists" in low-income countries. "GALEN will ensure that HIV/AIDS-treating physicians will have the core clinical competencies to provide appropriate HIV patient care through its critical evaluation and certification components," said IAPAC President/CEO José M. Zuniga.
IAPAC members will work in partnership with the World Health Organization, Pan American Health Organization, and local partners to provide intensive face-to-face clinical education to physicians and allied healthcare providers, and evaluate their knowledge and progress through written and oral examinations and clinical observations leading to certification of HIV specialist practitioners. The curriculum design is intended to be adaptable to address specific regional needs. "We expect GALEN will evolve through contributions from the programs where it is implemented," said D. William Cameron (University of Ottawa, Canada), Co-Chair of the GALEN Curriculum Committee. He also commented, "I've been with IAPAC for many years, and I believe GALEN is one of [IAPAC's] most important undertakings, to say nothing of its being one of the more promising capacity-building interventions that I am aware of."
A second initiative is the Joint HIV/AIDS Care Initiative (JHACI). Five academic and research institutions will partner with IAPAC to provide operational expenses, medical education (through GALEN), medical exchange opportunities, and increased access to advanced HIV treatment to five rural HIV clinics in Brazil, Haiti, Jamaica, South Africa, and Thailand. "This approach will ensure that access to global funds and treatments are accompanied by access for healthcare providers and patients to appropriate medical education and knowledge, and that the potential clinical, ethical, and economic consequences of providing funds and drugs without equal attention to medical education and capacity building are prevented," said Zuniga.
Participating educational institutions are: University of Ottawa Medical School, Ottawa, Canada; Albert Einstein College of Medicine, New York; Makerere University School of Medicine, Kampala, Uganda; Thai Red Cross AIDS Research Centre, Bangkok, Thailand; the Royal Free Centre for HIV Medicine, London, UK; and the Federal University of Rio de Janeiro School of Medicine, Rio de Janeiro, Brazil. Mike Youle, Director of HIV Clinical Research at the Royal Free Centre for HIV Medicine pointed out, "This is a very practical initiative," acknowledging that the first step in the capacity-building process is implementing projects such as JHACI. "If we don't do anything, we won't get anywhere," he said. This logic, straight and to the point, is the driving force behind both initiatives; empowering physicians and allied health professionals to care for their patients from within locally and nationally sustained infrastructure.
Many speakers at the Barcelona conference expressed frustration with wealthy countries that have not met their pledges. Graça Machel, advocate for children's rights, commended "the sterling efforts of Sweden, Norway, Denmark, and the Netherlands, the only countries to regularly meet the [promised] 0.7 percent mark," contrasting them to the United States and the rest of Western Europe, which linger far short of promised contribution levels. In recognition of this failure to pay promised dues, activist Terje Anderson of the United States said, "We have heard a lot about which countries are shouldering their share of the burden for the response to this crisis, and which countries, like my own, are not." Brazil's Paolo Teixeira admonished wealthy countries in his plenary address: "We need the United States, along with Japan and Western Europe, to assume, at last, their responsibility in changing, or not, this dramatic situation."
On the same topic, Julio Frenk, Mexico's Minister of Health, said, "It is important that we make this fund truly global. Middle-income countries that can afford to contribute to the fund must make that contribution. My country, Mexico, will make a contribution." He explained that even if the contribution is symbolic, it is important that the Global Fund not become another model of the richest helping the poorest. ICASO reports that of the 48 countries determined to have a high human development index, 28 have made no contribution to the Global Fund. Most agreed that this is unacceptable, given that the disease amounts to such a great collective burden.
|Should the U.S. Response Be an International Model?|
A forum on U.S. domestic policy packed the hall one evening of the XIV International AIDS Conference, in Barcelona. The standing-room only event was convened by Washington, DC-based policy group AIDS Action.
A panel of representatives from large, long-running AIDS programs gave their perspectives on the history of the epidemic and community response in the United States. Their testimonies highlighted the role of discrimination and activism in that history.
Ana Alvera of the Gay Men's Health Crisis (GMHC) in New York, said, "From the very beginning, the gay community -- and its allies -- was way more diverse than we tend to give it credit for being. And also the clients -- it was never all white men. I'm saying this because I think it is very important for us not to perpetrate the invisibility of women in the epidemic and people of color in the epidemic and poor people in the epidemic since the very beginning. We have many epidemics. We have an epidemic that has moved very fast into vulnerable communities. Does this mean the epidemic has left the gay community? It hasn't left the gay community. It has expanded to other communities. ... It is almost as if, when we say, 'gay community,' we mean 'gay white men.' And when we say 'communities of color,' we mean 'everyone's straight.'"
GMHC started with a hotline and buddy program in 1981, recounted Alvera, when a "gay disease" had been identified. Today GMHC provides three types of services: clinical, prevention, and public advocacy. The agency now serves a clientele that is 25 percent female. "These women are poor women of color, 60 percent black and 40 percent Latina, and are heads of households," said Alvera. "Women choose to come to GMHC because we offer a continuum of services from prevention to longer-term care in one place. Women also tell me, 'I go there and men don't bother me.' I think that is about the history of sexual violence that women living with HIV/AIDS carry with them. Also, we have a family program, and they can bring their children with them."
The San Francisco AIDS Foundation (SFAF) also has a history of providing both prevention and care services, as well as activism. "From the beginning," said SFAF's Fred Dillon, "our epidemic, comprised heavily of gay men and drug users, was considered our problem by U.S. policy makers." He gave credit to early activists. In San Francisco and the [rest of the] United States, he said, activists showed that "a relatively small group of committed and active citizens can make a difference and can make a government that doesn't want to, listen."
Craig Thompson of AIDS Project Los Angeles (APLA) has been living with HIV since 1984. "When I look at the AIDS epidemic and what we did right and what we did wrong and what we could learn from what we've done," he said, "it is hard to separate it from the personal experience." Thompson said that early activists, including himself, were not always motivated by purely altruistic feelings. "Many activists thought they'd get better information inside the movement," he said. "Also, there was a feeling of prestige working in AIDS. There is no prestige anymore."
Though APLA started with a slate of services similar to the other longstanding programs, Thompson said that he thought a strength of the early movement was the diversity of efforts. "From the beginning," he said, "we created strong, local, vibrant community responses." He noted that the commonly cited shift of the U.S. epidemic to minority communities is not a recent phenomenon in Los Angeles. "Ten years ago, in 1992, the majority of APLA clients were poor people of color," he added.
"If there is one lesson it is important to remember today," concluded Thompson, "it is that we've got to continue to acknowledge the role that sex between men plays in this epidemic. And a lot of the work we still do is gay rights work. It is helping men acknowledge their behaviors. I honestly don't think we're going to be able to design good prevention efforts until we understand who is having sex with whom. And help them come to terms with that."
Cornelius Baker of the Whitman-Walker Clinic in Washington, DC, stated that, "We have the highest HIV rate per capita in the country. One in 20 of the population is infected. When you talk about sub-populations, like black men, you get one in 10."
"Whitman-Walker started in 1973 as a gay men's STD clinic," he said. "We knew immediately that black gay men would be infected." He continued, "If AIDS is really about racism, homophobia and poverty, then it's really important for us to lead this conversation about power. Without erecting a structure where people can access healthcare from birth, people aren't going to be able to maintain good health."
Chris Bates, of the U.S. Department of Health and Human Services, moderated a government panel, recalling his disappointment when it was discovered that the disease was not propagated by the use of "poppers," a drug commonly used by gay men at that time. "I was very sad to realize it wasn't that," he said, "that it was far more complicated. ... It is important to remember that this thing we now call HIV/AIDS came out of people trying to find love. Men who were trying to find intimacy in a world that didn't value them."
"There are still many people in the United States who don't have access to HIV care," commented Ron Valdiserri, of the U.S. Centers for Disease Control and Prevention (CDC). "We estimate that as many as 224,000 Americans are diagnosed with HIV and don't have care." He presented statistics on the current face of the spread of HIV in the United States, giving a figure of approximately 40,000 new infections per year. Of those, Valiserri said, 30 percent are women. Of that 30 percent, 75 percent are thought to be heterosexual transmissions, and 25 percent from injecting drug use. Of the 70 percent of annual U.S. infections attributed to men, 60 percent are estimated to be in men who have sex with men, 25 percent injecting drug users, and 15 percent men who contracted the virus through heterosexual contact. "Thirty-two percent of African-American young men in one [CDC] study were infected with HIV. These are rates you hear people talk about when they talk about Botswana," he said.
Charles Henry of the Los Angeles County Health Department pointed out an immediate link to U.S. HIV/AIDS policies and the worldwide response. "For those of us in large U.S. cities," he said, "with business and personal travel of our citizens and immigration patterns, the international epidemic is also the local epidemic."
Should the U.S. response to HIV/AIDS be a model for addressing the epidemic in other parts of the world? This discussion, held an ocean away from home, indicated that the U.S. experience might serve as a reminder to other nations that a response to this disease is inseparable from a society's responsibility to its marginalized populations.
Carmen Retzlaff is a writer and public health educator in Austin, Texas. She may be reached at email@example.com.
Back to the October 2002 issue of IAPAC Monthly.
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