From the 12th World AIDS Conference
Geneva, Switzerland, June 28 – July 3, 1998
This is an overview of prevention and policy news from the 12th World AIDS Conference in Geneva, Switzerland, June 27 through July 3, 1998. It is reported back by Pamela DeCarlo of CAPS and is meant to be one person’s perspective, and by no means an overview of everything that occurred at this huge and sometimes overwhelming conference.
The theme of the 12th World AIDS Conference was “Bridging the Gap” and many people referred to this gap as the difference between epidemics in the developed and developing world. Specifically, many spoke about how the new drugs for HIV that have had such remarkable results in prolonging life and reducing AIDS death rates in the developed world had no bearing at all in the developing world. Most developing countries cannot afford the expensive new treatments and cannot even afford basic medicine to treat malaria or tuberculosis.
On the prevention front, Peter Piot, Executive Director of the Joint United Nations Programme on HIV/AIDS (UNAIDS) spoke about bridging the gap in terms of efforts to reduce the spread of HIV. “The biggest AIDS gap of all is the gap between what we know we can do today, and what we are actually doing,” he said. In prevention, as opposed to treatment, ” we know what to do, and we know what to do now.”
Piot mentioned achievements in prevention efforts, where HIV infection rates appear to be slowing down, not just in the developed world, but in developing countries as well. “In Brazil, Senegal, Thailand, Uganda, and now in parts of Tanzania,” he said, “HIV rates among young women have been cut by more than half as a result of strong prevention programs.”
But along with the achievements were many sobering and devastating statistics. According to Piot,
- In just the last three years, 27 countries have seen their HIV infection rates more than double. In Asia, a doubling of infections has occurred in almost every country. In several countries in Eastern Europe, the increase has been six-fold and more.
- Today, in Botswana and Zimbabwe, one out of four adults are infected.
- In South Africa, 3 million people are living with HIV. In India, some 4 million.
- Last year, AIDS killed as many people as malaria.
The gap we desperately need to bridge is between what we know we can do and should be doing to prevent HIV infections, and what we are doing. Piot urged everyone to stop waiting and commit to action. “We need to stop waiting,” said Piot:
- “for a perfect strategy that will assure universal access to all drugs in the future. Rather, let us do what we can do to improve access to care today, even as we commit ourselves to do better tomorrow.
- for a perfect candidate vaccine. Rather, let us push ahead with efficacy trials for the best candidates we have today, even as we commit to increase research on better vaccines for tomorrow.
- for a single magic bullet for prevention. Rather, let us commit ourselves to a public health strategy of “combination prevention” — and press for more vigorous implementation of the full array and mix of prevention approaches that we know are affordable — and we know will save lives.
- for like-minded partners to find and join us. Rather, let us commit ourselves to find and join them. Provided that we work from a common commitment to protect and promote the human rights of all people, there can be no “litmus test” for membership in our global AIDS movement.
- for tough political choices to become easy political choices — because they won’t. Whether it be sexual health education for young people, or needle exchange with AIDS education for drug users, let us commit to ourselves and each other that we will have the courage of our convictions to stand with the data and against the politics of division when the lives of our young people hang in the balance.”
This year in Geneva there were a fair amount of presentations on policy matters, a topic that seemed to be lacking in Vancouver at the 11th World AIDS Conference. Politics, Human Rights, Economics and Ethics were all subjects addressed in relation to HIV and AIDS. On Monday, June 29 from 3-5 p.m. in the session “Politics Behind AIDS Policies,” three countries presented case studies: South Africa, Russia and India.
Helen Schneider, of the Centre for Health Policy in Johannesburg, South Africa noted that it is difficult to implement prevention in a state that is in transition (Abstract # 24141). In 1994, the new South African government adopted a National AIDS Plan, but by 1997 very little of the plan had been implemented. Some of the barriers were: lack of coherence and continuity during government restructuring; a lack of political leadership and commitment; conflicts between non-governmental organizations (NGOs) and government; and a focus on AIDS scandals that dominates the media.
Schneider recommended trying to “do a simple thing well, rather than doing a complex thing badly.” Some regions in South Africa have focused on STD care and treatment as a starting point in HIV prevention efforts. She also highlighted Soul City, a prevention program that uses a soap opera format to present education and prevention through television, newspapers and radio, and said that it has been received in rural parts of Africa and has been quite successful.
Radhika Ramasubban of India noted that India has the highest number of HIV+ people in Asia. She noted that there is a “political quagmire” in India that hinders prevention efforts, and that public health decisions are made by individual states, not at a federal level. The other main problem is the exclusion of topics of sex and sexuality from public discourse. “Because AIDS first showed up in commercial sex workers, it was easy for government to sweep it under the rug,” she said. It is assumed in India that all people get married and are monogamous, so topics like condom use, homosexuality or multiple sexual partners are very difficult to address. Ramasubban mentioned the one exception was the state of Tamil Nadu that had a state-run program of prevention that included a media campaign.
Valeriy Chervyakov addressed political changes in Russia since the restructuring of the former Soviet Union (Abstract #24289). While the general quality of life among Russians has declined since the early 1990s, HIV infection rates have increased six-fold, with half of all infections occurring among injection drug users (IDUs). Syphilis rates have also skyrocketed. Between 1990 and 1996, syphillis rates increased 48-fold among Russians, and among teenagers it increased 68-fold.
Some factors that have led to the increase in HIV infections include cultural factors such as an absence of safer sex traditions, prejudice against condoms, little talk about sex (there are no Russian words for discussing safer sex) and a Russian tendency for risk-taking. Educational factors include medical staff being ignorant and telling patients that condoms don’t work. Organizational factors include a reliance on HIV testing of the total Russian population instead of educational campaigns, and blocking foreigners from entering Russia without proof of HIV- status.
In an attempt to address dramatic increases in HIV and syphilis, sex education and prevention programs were developed. However, three forces have succesfully combatted prevention efforts in Russia — Pro life organizations, communists in the Russian Parliament, and the Orthodox church. “This new fundamentalist alliance, using the argument that sexual education is a conspiracy of Western secret services and pharmaceutical companies aiming at depopulation and moral degradation of Russia, became a significant political power,” said Chervyakov.
A school sex education program was stopped by the Russian Parliament. Government funding of family planning centers was reduced. Safe sex promotion campaigns in Moscow were banned; promotion of condoms was even forbidden in some Russian regions.
Chervyakov said that Russia could use: more foreign aid; an international conference to take place in Moscow or St. Petersburg (to bring international media attention); and an influx of volunteers such as Médecins Sans Frontières.
The topic of perinatal transmission of HIV was the most frequently discussed issue in women’s health during the conference. Everything from treatment advances, to risks of breastfeeding, to cultural factors, to lack of services for women, to the ethics of placebo-controlled clinical trials were addressed.
Robin Gorna, Chair of the Community Planning Committee for the Conference addressed the opening ceremony on Sunday, June 28, summed up the issue for many women. “The emphasis on preventing perinatal transmission is good for the babies, but not good for the women,” she said. In many developing countries the only access to AZT for women is through clinical trials of perinatal transmission, but that once the trials are over the women no longer have access to any medications whatsoever. Gorna urged us to address the plethora of prevention and care needs for women, and not just focus on women who give birth.
On Monday, June 29 the morning plenary session focused on prevention.Lynn Mofenson of NICHD-NIH reported that an AZT regimen was effective in preventing maternal transmission even in women with advanced disease and prior AZT use (Abstract #23265). She also announced that women who had cesarian sections had 1% and 0% transmission rates. The implications of this finding are not clear, and Mofeson cautioned that HIV+ women who have cesarian sections may have higher infections and risks of problems, especially in the developing world where surgical resources may be inadequate.
Mofeson said that for AZT to be effective the following items need to be in place:
- prenatal care
- HIV counseling and testing with follow-up to ensure women return for test results
- AZT available and affordable
- adherence to the drugs
- trained staff
- breastmilk strategy
- long term care for the mother and child
Mercy Maklehema, an HIV+ mother, spoke next about her experience losing a daughter to AIDS. “Doctors think that because we’re women and mothers that we’re ignorant. They don’t explain the side effects of the drugs so that we can’t recognize them and know when there might be a problem.” When she gave birth to her daughter she was on an AZT regimen, but no one told her that she could infect her daughter through breast feeding. When the doctor leaves, she noted, the women are still here and need to pick up the pieces of their lives. “Out of these torn threads, we must try to make new clothes,” she said. “How do we do it?”
Maklehema suggested the following be done:
- Funding for counselor training
- PWAs help in counselor training
- Clinicians work with social scientists to conduct studies of the culture and social lives of women. Maklehema suggested these studies should be nested into clinical trials
- Studies of breast feeding habits in different geographic areas
- PWA organizations should support women whether they choose to breat or bottle feed
- Cost-benefit analysis of perinatal studies include women’s health after birth
In order for breast feeding to be avoided as an HIV prevention strategy, several structural factors need to be addressed. First, bottle feeding cannot occur without access to clean water for mixing formula. Second, many women in developing countries cannot afford formula even if they wanted to not breast feed.
Cultural factors are also integral to making a choice between breast or bottle feeding. In many countries, the idea that “breast is best” is still very strong, and the cultural view is that good mothers breast feed (Abstract #44266). For many women breast feeding is the healthiest way of feeding their children.
Maklehema suggested that counselors help women who decide not to breast feed by teaching how to introduce the idea of bottle feeding to their families so that they understand the reasoning and don’t blame the woman for abuse. Also, if a woman has not disclosed her HIV status to friends and family, bottle feeding can be particularly suspicious. “How will she deal with nosy neighbors who are always ready to criticize?” asked Maklehema.
On Wednesday, July 1, Erica Gollub reported on The Philadelphia Women’s Health Sister Studies, where women at a busy inner-city STD clinic were offered counseling and education in body knowledge and comfort, and were given a “women’s risk reduction hierarchy” (Abstract #33153). This hierarchy gives information and training on male and female condoms, diaphragms and cervical caps, spermicides, and withdrawal to reduce risk of infection.
Gollub argued that in the US, barrier methods have been discouraged by the media and medical professionals in favor of the pill and IUDs. The result has been a general discomfort with and lack of knowledge about women’s bodies. The myth, she says, is that barrier methods won’t work because women are afraid of touching their genitals. In the Philadelphia program they educate women about their bodies and encourage discussion in small groups. “Body knowldege, comfort and pride leads to self-esteem, which leads to decreased risk taking,” said Gollub.
Offering women a hierarchy of risk reduction options is also empowering, she said, as most counseling focuses solely on male or female condoms. In her study, return rates were higher for women offered the hierarchy (75%) versus those offered only male or female condoms (50%). Also, at intake, the most wanted form of protection among the women was foam or spermicides (61%). At 6 month follow-up, only 28% of women requested foam.
One interesting statistic that Gollub reported was that among the women who used the female condom, 40% said that using the female condom helped convince their partners to use a male condom.
Marina Mahathir addressed the plenary session on Thursday, July 2 on the topic of “Priorities for public funds: crises in national leadership?” There are currently enormous economic crises occurring in Southeast Asia. Some currencies have devalued to one eighth the value of a few years ago, and prevention programs in particular have suffered. In Malaysia, for example, 1.8 million (local currency) was spent on prevention in 1995, and in 1998 only 129,000.
The financial cuts have been sudden and are occurring at a time when HIV infections are increasing and more people are at risk. It is also difficult for formerly relatively well-off countries to look for foreign aid. Western countries, noted Mahathir, give priority to funding poorer countries with higher epidemics (such as Africa).
Even when countries recover from the economic crisis, the AIDS epidemic will be a burden to complete economic recovery. If the epidemic is not addressed now with funds for prevention, it will cost much more in the future in terms of caring for people with AIDS and supporting AIDS orphans.
“How do we remain effective in a time of great political and economic difficulty?” Mahathir asked. “How can we maintain a focus on HIV and AIDS? It may seem like a small priority now, but it will be a huge burden in the future.”
Mahathir recommended the following priorities for funding:
- Prevention among those that need it most – IDUs, sex workers.
- Trans-border cooperation for migration and resource sharing
- Women – prevention, care and support
- Increased involvement of PWAs in policy and prevention
- Understand long-term economic benefits of care now
- Understand that prioritizing HIV leads to greater health for the general population.
Valeriy Chervyakov addressed economic changes in Russia since the restructuring of the former Soviet Union (Abstract #24289). Since the early 1990s, the gross national product (GNP) of Russia has been reduced by one-third. Under the soviets, 10% of the population lived in poverty; now 25% of the population lives in poverty, although some estimates say nearly 90% are currently living in poverty. There has been a drop of nine years in the average life expectancy of Russians. In 1967, life expectancy for males was 67, and in 1995 it was 58 years. Life expectancy for females is much younger.
Meanwhile, HIV infection rates have increased six-fold, with half of all infections occurring among injection drug users (IDUs). Also, between 1990 and 1996, syphilis rates increased 48-fold among Russians, and among teenagers it increased 68-fold.
In both Southeast Asia and Eastern Europe, injection drug use has emerged as a huge problem and a source of a growing percentage of HIV infections.
Palani Narayan spoke on Wednesday, July 1 on “Spread of injecting drug use in South and Southeast Asia: developing Asian harm reduction network.” He said that there has been a lack of attention to IDUs in HIV prevention efforts in Southeast Asia. Most early prevention efforts focused on sex workers and their clients. Also, because injection drug use is a criminal activity, many organizations did not focus there. Today in Southeast Asia, the rate of HIV infection due to injection drug use is increasing, as is the number of new IDUs.
Harm reduction programs that address the needs of IDUs have begun in Southeast Asia. Many of these programs include medical attention for IDUs, condom distribution, needle exchange and community support. In Bangladesh, a traditional drug detoxification center was redesigned based on the needs of the community (Abstract #33386). The center changed from an anti-drug center to a health center and combined harm reduction strategies with practical services such as needle exchange and STD treatment. Stigmatization of drug users in the community was reduced as a result.
Irina Savchenko spoke on “Outbreaks of HIV-infections among Russian injecting drug users” (Abstract #13191). Before 1994, there were no cases of HIV infection in Russia due to IDU. In 1994 there were two cases, in 1995 five cases, 1018 in 1996 and 2220 new cases in 1997. Drug use has increased dramatically in Russia and in other former soviet republics, such as Ukraine. Most IDUs use home made drugs and share injecting equipment. It is believed that HIV risk for IDUs in Russia comes not only from sharing syringes, but also from buying prepared solution from common syringes that may have been mixed and “tested” several times with contaminated equipment.
Russia’s main response to the HIV epidemic has been widespread HIV testing across the population. Since 1987 there have been over 20 million HIV tests conducted each year. In 1995, a new law was passed that allowed for mandatory testing of only 2 groups of people — blood donors and those who work with blood products and other hazardous materials. However, widespread testing still occurs. All persons diagnosed with drug addiction are tested for HIV, as are all hospital in-patients and out-patients, as well as all prisoners.
Savchenko noted some barriers to stemming the HIV epidemic among IDUs in Russia:
- There is no financial support for HIV prevention in Russia.
- There is not a lot of prevention programs targeted to IDUs. In April 1998, a new law was passed making drug use illegal and mandating drug treatment for all persons arrested. Since that law was passed, the few programs that existed for IDUs have stopped.
- There are 3 converging epidemics in Russia – STDs, HIV and drug addiction.
One topic of discussion in Geneva was the role of STD diagnosis and treatment in preventing HIV transmission. On Monday, June 29, “Access to STD diagnosis and treatment” was presented. New and different means of STD testing were discussed, particularly for women.
Juan Carlos Flichman discussed a study in Argentina that compared using vaginal tampons instead of cervical swabs for STD diagnosis (Abstract #22193). Flichman noted that many women are comfortable using a tampon, and it provided a non-invasive (i.e., non speculum using) way to test for STDs. It was also a method a woman could do herself, in the privacy of her own home. The study found that the tampon combined with a urine test was as effective in detecting STDs as a cervical swab.
Julius Schachter of San Franciso, CA discussed new STD testing technologies. He noted that many of these techniques were non-invasive as well. In response to a question from the audience about the need for pelvic exams to insure full diagnosis of problems, Schachter replied that many women need to be tested for STDs more often than they need pelvic exams. New technologies may not always replace pelvic exams, but are needed for more widespread and rapid STD diagnosis.
New STD tests need to be: 1) inexpensive (less than $1); 2) rapid (less than 1 hour to use, preferably within 30 minutes); and 3) stable (to be used where no refrigeration is available). Schachter discussed different tests now available or under development that met these criteria, as well as had high rates of sensitivity that matched those of more traditional STD tests. Some of the tests are: syphilis strip test (98.5% sensitivity); chlamydia square (84% sensitivity), Fem Exam for bacterial vaginosis (80% sensitivity) and vulval swabs or self-inserted vaginal swabs (90% sensitivity).
There were several presentations on ethical matters related to research in Geneva, most dealing with conducting research and specifically clinical trials in developing countries. A session on Wednesday, July 1, titled “Ethics and Science” drew a large crowd.
One interesting and somewhat disturbing aspect of this session was that the second presenter’s topic was listed only as “Reply”. Hoosen Coovadia of South Africa had been added to the session for the sole purpose of replying to the first presentation. In no other session for the entire conference were there any other presentations listed as “reply.” Indeed, Coovadia submitted no abstracts to the Conference and had no other presentations during the conference. It seems his presentation was not submitted in advance to the Conference and was not subject to peer review as were every other abstract, whether presented as an oral or poster. Very interesting, considering the topic of the session was “Ethics and Science,” that a presenter would be added in such an unscientific manner.
Peter Lurie spoke on “Additional unethical aspects of vertical transmission studies in developing countries” (Abstract #44123). He referred to his article published in the New England Journal of Medicine that discussed the ethics of conducting placebo-controlled clinical trials of AZT for pregnant women in developing countries. Lurie and colleagues started a campaign to ensure that all pregnant women in clinical trials had access to at least some antiretroviral drugs that had been proven effective in reducing perinatal transmission of HIV.
In this presentation, Lurie spoke of additional unethical practices in clinical trials in developing countries. First, he noted that the original ACTG 076 study had a subanalysis that showed a 2/3 reduction in HIV transmission among women receiving an average of only 7 weeks of AZT. This was the same duration of AZT that many clinical trials were testing against the placebo, but this was not mentioned in any informed consent given to the women participants. Second, none of the trials have any provision for women continuing access to AZT after the trial ends. Third, there is an observational study being conducted in Thailand that offers no AZT to pregnant women, even though Thai researchers discontinued their own placebo-controlled trial in January 1997.
Lori Stoltz of Canada spoke on “Developing policies on HIV/AIDS and pregnancy that respect law, ethics and human rights” (Abstract 44101). Stoltz provided an overview of Canadian law and how it applies to women and their children, in light of recent discussion of mandating HIV testing and counseling for all pregnant women to prevent vertical transmission. In Canadian law, the fetus does not have legal rights and must be treated as a part of the pregnant woman. Also, the health of the child cannot be used as a reason to coerce women to change their behavior.
These laws mean that no woman can be mandated to test for HIV or take medications simply because it is in the best interest of the fetus. “Most women will move mountains to ensure that their babies are healthy,” said Stoltz. “Women need help in moving those mountains, not judicial coercion.” Stoltz recommended that countries ensure all pregnant women are offered the opportunity to undergo informed and voluntary HIV testing during pregnancy and that governments avoid coercive measures such as routine or mandatory testing of pregnant women.
Ambrose Rachier spoke on ” Ethics in HIV/AIDS research in Kenya: The cases of Immunex, Kemron, Pearl Omega and Polyatomic Apheresis (WDDS treatment)” (Abstract #44140). Rachier chronicled the history of informed consent, ethical review, and drug trials in Kenya. He also spoke of four drugs or treatment therapies that had been touted as a cure for AIDS, had been tried on Kenyan citizens, and had been exposed by international researchers as failures (although some are still in use in Kenya). Although ethical review panels exist in Kenya, he said the ethics of research were grossly abused in most cases, ethical clearance committee approval was generally ignored and the substances in question were not registered as required by Law. Most drug trials were administered in breach of internationally recognized ethical principles.
Rachier noted that informed consent in Kenya is practically impossible because sick patients are desperate for any kind of treatment and are willing to believe that anything will work. One of his conclusions was that “HIV+ persons need to be protected from researchers.” He also noted that ethical review committees often had researchers on representatives from drug companies on them. In all of the four cases presented, similar clinical trials had been submitted to developed countries and had been denied. Rachier said he did not believe in the concept of “standard of care” and said that ethics in HIV/AIDS research and drug trials ought to be universal.
Jose Luis Valdespino Gomez spoke on “Ethical vs. moral duties when HIV/AIDS clinical trials end” (Abstract #44126). In Mexico City, Mexico, clinical trials for chemoprophylaxis of tuberculosis were conducted from 1993 to 1997. Gomez spoke about what happened to participants after the study ended, and the moral responsibility researchers have to patients post trial. National and international ethical regulations were followed for the trials, and informed consent was received from all participants.
However, Gomez noted that 82% of all participants would not have received any care for TB if they had not been in the trial. Although referrals were given for care after the trial, most participants did not have access to quality care once the trial ended. Gomez also noted that they have been unsuccessful in recruiting participants for a another clinical trial. “Although ethical regulations have been followed and scientific purposes have been achieved, we, as investigators, feel frustrated as we consider that a moral commitment is established with participants which goes beyond legal aspects,” said Gomez. “Moral obligations within clinical trials, beyond ethical and scientific issues, should be discussed.”
Last modified: November 2, 2012