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Change and Rumors of Change

September/October 2004

In nearly every corner of the globe, HIV treatment advocates are working for people living with HIV/AIDS, helping them to get the care they need and the respect they deserve; helping them to get the most out of whatever medications are available; to understand what is happening with the virus in their bodies and to learn what they can do to maintain and improve their health. In the U.S. the job may involve getting a client who needs an unaffordable drug for their salvage regimen admitted to a patient assistance program. In one part of Kenya, it may be getting a client access to free tuberculosis treatment and drugs to prevent pneumonia in the hope that serious illness can be forestalled until antiretroviral (ARV) drugs finally become available. While in another part of Kenya, the challenge may be helping a patient who has failed her free first-line regimen get transportation to the U.S. financed PEPFAR clinic so she can start a second-line set of drugs. In Pakistan, the advocate's work may be counseling family members of a person diagnosed with HIV to relieve the stigma, thereby preserving the only source of care and support he has. In Argentina, the challenge may be to refill a prescription for free government-provided drugs when the nearest clinic is 1,000 miles away.

Despite the wide range of resources and problems that treatment advocates deal with, they often face a common set of challenges. All too often the doctors their clients rely on are poorly trained, dismissive or simply unwilling to provide information or care that goes beyond handing out pills. Everywhere that antiretroviral drugs are available, and in many places where they are merely anticipated, the prime adherence message about taking the drugs consistently is being taught. In addition to such basic treatment literacy, people with HIV worldwide are learning about nutrition, side effects and the healing community that can form when people speak out about their illness and embrace life.

All over the globe, things are changing for people with HIV/AIDS. Mostly the changes are improvements; stigma is lessening; free ARVs are becoming available; resources from international donors are starting to flow; lives are being saved and hope is coming alive. In many regions, though, change is slow to come and oppressive conditions are lingering or getting worse. In several countries, conditions seem poised for change, but are stalled by corruption and the unwillingness or inability of the Global Fund to Fight AIDS, Tuberculosis and Malaria to follow through with promised grants.

Recently, 26 HIV advocates from around the world were asked what changes they had seen in the past 12 months; and what changes they hoped to see in the coming year.


Eid Muhammad Shamas, Pakistan

It is a very tough situation for someone with HIV in Pakistan. There is a lot of stigma and discrimination -- not only in the general community but in doctors' attitudes. When a person goes to the hospital he faces discrimination. He fears to seek treatment because the doctors often ask embarrassing questions like "how many times have you had sex with females." Because sex is a taboo issue in Pakistan culture, people don't talk about sex openly. So when a person faces these kinds of questions, he feels fear, feels shame, and feels guilty. And he faces great difficulty maintaining his health because the doctors don't cooperate with him.

When people with HIV come to us, our doctor examines them and can get them to the government hospital for drugs and testing but not ARVs. People don't want to go to the hospital because they are afraid their status will be told to their family members and friends. But when they come to us we counsel them to reduce their guilt and shame and then we do counseling with his family so he won't be rejected. The majority of families will be accepting once they are counseled.

Elie Bertrand Gaston Kampoer, Cameroon

The stigma about HIV among the medical personnel is less now in the cities but it is still bad in the rural areas. Anywhere the NGOs (non-governmental organizations) are not present, the discrimination is bad. If you have a choice, you get better care from private doctors, but it is too expensive. In the past year, the fight against AIDS is getting stronger and moving more into the rural zones. But they are still not working enough on treatment.

We are hoping that the Global Fund will bring a big change in how people are treated for both HIV and tuberculosis. But I'm afraid that what is written on paper is not always the case in reality.

Lydia Mungherera, Uganda

In the past year there has been an increase in the awareness of treatment. A few years ago we focused on having a healthy life and told people how to care for themselves and how to have safe sex. And now, we are gearing the NGOs and CBOs (community-based organizations) towards treatment, saying, "There are lifesaving drugs and everybody needs access to them." And that's a change.

At the moment, most of the funding for ARV is coming from the donors. But I hope that in one year's time the government will also put some effort towards treatment. Most of the money we have goes towards defense. If we could put more into the health facilities and human resources, we could do a lot.

Tesfalidet Debesay, Ethiopia

Awareness about HIV/AIDS has improved in the last year. Awareness is good, actually. Some research studies say that 95 to 97 percent of the population are aware of HIV/AIDS. But what matters is the behavioral change, because we still see people doing risky behaviors. Awareness is good, but behavioral change progress is very slow. And I think that the prevalence of HIV is increasing and Ethiopia is a country hard hit by HIV as well as tuberculosis. We are a high burden country on both diseases.

The changes we need are not for the next year, but Ethiopia needs to work for the coming two or three decades to tackle these diseases. It is not a simple disease to tackle within five or six years because nearly 3 million people are living with HIV/AIDS in Ethiopia. It is one of the hardest hit countries next to South Africa and Nigeria. We need three or four decades to reverse the situation.

Precious Jackson, U.S.A.

Not much has improved in the past year. I'd say they are getting worse. For example, I hear from women who go to the AHF (AIDS Healthcare Foundation) clinics that they are not being treated the way they are supposed to. The problem is, there are so many cases, the doctor doesn't have time to actually sit down and talk to the women and answer the necessary questions they have. A lot of the women are having side effects, and they tell their doctors, but sometimes the doctors ignore them until it's too late. Women call me and tell me this and sometimes I have to go with them because they don't feel like they are being heard. So we go in support to assure that her voice is heard.

I think that doctors really need to take women seriously. They need to listen to them. If they say, "I have a pain in my leg and I know there's something wrong," don't ignore it or say, "Oh, it's probably just arthritis." Because arthritis is a valid complaint and something needs to be done about it. My thing is just to listen and to know what the person is saying is valid.

Julia Vinckler, Estonia

There is stigma about HIV in the medical profession but it is becoming better. Two years ago they didn't know anything about it, but now a lot of information has been coming. In the prisons, when we came there, there was a separate block for the positive persons; now that doesn't exist. As the prisoners become more educated they also educate the staff. Outside the prisons, the city government decided to organize low threshold centers for drug users, which is a big step forward. There are also more needle exchange places. So, step-by-step, slowly we are moving forward.

The next steps will be to have more possibilities for the rehabilitation of the drug users. We have methadone treatment for free, but it is not enough; we need rehabilitation.

Mohammed Farouk Auwalu, Nigeria

In terms of HIV/AIDS, I think a lot has changed in the past year, because more people are getting on treatment now, and some people who are very sick are getting better now because they are taking medications. And PLWHAs who are activists are gradually coming out of their shells, you know, breaking the silence and trying to do advocacy and activism in terms of addressing specific issues that have relevance to the lives of infected and affected people in Nigeria.

The biggest change that has to happen, first and foremost, has to do with the issue of transparency and accountability. That's key. Because, I can tell you that in Nigeria, if you read the last report from Transparency International, Nigeria is the most corrupt country in the world. And I can tell you that HIV/AIDS is not excluded. We have seen a lot of people become AIDS millionaires overnight. So for me the key issue now is that activism has a lot to do in terms of transparency and accountability. We have to hold our leaders accountable for whatever they have said. And first and foremost we have to hold ourselves accountable, because you don't start attacking somebody if you can't look at yourself. If you're straight up, you can look at anybody and tell him he's not straight up.

Francisco Rosas, Mexico

Not much has changed in the past year. People are dying in Mexico, especially children, young people and women. They have access to drugs but, in my opinion, they need access to quality care. It is not the same to have access to treatment and comprehensive care. It is not the same, to receive drugs each month and to receive quality of care.

We have to create new leaderships among HIV-positive people because the existing networks are so few and many of the leaders are dead now. Another big problem is that drug companies condition these leaders to do some kinds of work and not others. For example, the drug companies said to these leaders, "Don't talk about generic drugs and oppose the local production of generic drugs." But the drug companies bring their organization's money. I think one important problem in Mexico is corruption among leaders.

Lucy Chesire, Kenya

To be really honest, things have really changed. Five years ago when we started the clinic, you'd get someone coming into the clinic, she walks in and there's a big waiting room outside and she doesn't want to sit there. So she goes into a different room and says, "Lucy, when it's my turn to see the doctor, please come and call me." But nowadays, you get someone walking into the clinic and it's not an issue, because they already know it's an HIV clinic and they don't find it's an issue. You find them sitting there outside waiting and they want to know, "When is my time coming so I can get attended to and I go." It's not a big problem. So that's a big, big change and that is what has contributed to the big numbers that are actually coming into the clinic now. The stigma within the hospital does not exist. And people have understood that we are moving into a new building because the number of patients has become too large.

Still, free ARVs are not yet everywhere in the country. We are funded by PEPFAR and Global Fund and also Indiana University, which has really played a big role. But it is a big country.

ARVs in Nigeria

The government of the fair Republic of Nigeria started a national antiretroviral program which was to treat 15,000 patients. The program has been there two or three years now. The program has not been working well. The situation is that there are a lot of patients on that program who have already grown resistant and we don't have the second-line treatments, which is a major, major issue for us. And that's why, as activists, we were happy when PEPFAR came up. PEPFAR said they were going to treat more patients in Nigeria -- and not only treat the patients, but they are going to provide a comprehensive level of treatment, which has been lacking in the government program, because the government just brings the ARVs and gives them to the patient at a subsidized rate. But the question is, do you give the patient a subsidy when the patient does not even have the money to get the laboratory tests and find out if indeed these drugs are working or not?

-- Mohammed Farouk Auwalu

Sunil Pant, Nepal

We now have 25 people on ARVs who started this year; otherwise not that much has changed. The press has been very friendly this year on HIV/AIDS; they wrote a lot of articles. A few organizations also sponsored a few radio and TV programs. So that's good, but we do not have that commitment for education from the political leadership and Nepal's situation is very poor: the political situation; the security situation is bad. Because the security presence is so strong in Nepal now; in Kathmandu it is everywhere. Every street has a checkpoint and patrolling, so the metis (feminized males) and sex workers going in the night for sex or for earning money or something, they get checked and raped or blackmailed or cheated by security forces.

The situation for access to health care and treatment should be improving, but it is something pretty hopeless to think about in Nepal, because the Global Fund granted a second round proposal but they haven't been able to send any money, and the government is corrupt -- they don't really think about the community. And the Global Fund sort of says, "Oh, we have made the grant." But Global Fund needs to tell government, "Either you take it or not. If you are not able to do it, they we'll give it to the NGOs." They should start working with us and stop waiting, waiting for the government to get their act together, which never happens.

Fatima Koshokova, Kyrgyzstan

The main route of transmission is injecting drug use. Our city is situated on the drug traffic that goes from Afghanistan and Pakistan to our CIS (Central Independent State) countries and then to Eastern Europe. And drugs are very cheap in my area, for example, for one package of heroin, it costs about 10 dollars. That's why it's one of the most used drugs in my area and most drug users are injecting drug users.

If you compare HIV/AIDS stigma and TB stigma, HIV/AIDS is stronger. At the moment, only one person in my country came out with his HIV-positive status. As for TB stigma, it depends on the community where the person lives. For example, injecting drug users are not afraid of TB stigma; if they have TB, it's not a big deal. But, for example, if a person works at the university, it will be a stigma. People don't want other people to know they have TB. They will avoid contact with the person, so they won't get TB.

Beverley Figaji, Namibia

The CD4 count for eligibility to the government ARV program has been raised from 250 to 300 and more people are going on treatment. I think that's also due to our voluntary counseling and testing center. The positive clients coming out know that they can go to the ARV clinic because we're referring them straightaway. It's not people wandering around aimlessly not knowing where to go anymore.

I would like to see our center becoming a one-stop-shop. I would like to have everything there. If you come out positive, you could go straight onto treatment. No need to walk or take a bus. Our public transport service is not good; it's expensive for people. You can't just jump onto a train or a tram or a bus. You have to pay a taxi and it's expensive, or you walk. So it should be a one-stop shop. And other progress that's been made is that government has decided to go for rapid tests now. So if a person is positive, then we should be able to then give their CD4 count and give the treatment all in one place on the same day.

Matt Sharp, U.S.A.

Despite the complexity of all the new medications that are coming out, in general I'm seeing people in better health; their overall health status has improved. It seems that, at the very least, people are more stable. I still see some deaths occurring, but they are all unrelated, there's no pattern to why they are happening. Maybe a suicide or things like that. I don't see that the deaths are related necessarily to HIV.

I'm a big proponent of educating people. I still see a big gap when talking to people about what's going on in their lives with treatments and with their doctors. There's a big misconception in the community that puts doctors on a pedestal and we're trying to break down that misconception and say, "You have to be able to speak to them on your level." I see that as a big area of work for me.

MacBain Mkandawire, Malawi

Within the catchment area where I am working, I wouldn't say there have been many changes in terms of care. One key problem is there was a tendency to say HIV is a medical problem. And for those of us who are not coming from the medical background, and are trying to change that notion, it has really been a hassle.

We want to see the community members themselves take action and care for the sick. The hospital should be the last resort. I mean the hospital should be for purely medical situations and not things that have got to do with nursing care. Like 70 percent of the bed space in the hospital, you could actually see that these are TB and HIV cases. So, what we are saying is, that if there was a better mechanism for care and support, and if we make progress against stigma, then people who are sick can get back to the community without being harassed or intimidated and we would be able to see a positive development among the people who are sick. But also taking into consideration that those who are sick have got children, and as they get stigmatized, we stigmatize the whole family and the children, and the growing up of those children becomes horrible.

In our area, there is no one receiving ARVs through a government program. But in other areas, there are. We have been told that it's going to start soon and that's why we want to do advocacy on the education and treatment programs so that they should be ready. We know when they start getting ARVs, the issue of nutrition will be very critical.

But in the meantime people continue to get sick and die and there is nothing we can do about that because it is a government program -- you know the bureaucracies of government -- and because about 50km from where we are there is a hospital that actually administers ARVs. But when we went there with some of our clients, we were told, "No, you are not in our catchment area, so we can not give them to you."

Elizabeth Anyango, Kenya

We've seen an improvement in acceptance in the past year. The peer educators who have accepted their condition have been influencing the others to seek medical care. People see that those who were very sick, now walk. Because some people are sick with TB and after the TB has been sorted out, they're able to work and they're able to walk. So, the other people feel that since so-and-so is able to come back and work, I too can seek health care. So that is something that we have seen. Also, our government promised a roll-out of ARVs. They released medicines in one of our district hospitals. But they only can take about five persons and they are showing about 400 persons on the waiting list. So they don't even take the five because how can they select the five? So they are using the medicines for their prophylaxis for the health care workers -- when they are treating, they are going to get exposed -- so that's what they are using for medicine. So, the impact of that has not translated into anything.

I hope to strengthen our community strategy, in terms of strengthening treatment literacy. We hope that with the PEPFAR support the ARVs will be able to reach more people than they are reaching now. We also wish to reach other funders that work in this field because they don't provide ARVs. So we are hoping to influence them to provide the ARVs to people that are in dire need, because, in one of our secondary schools, we lost six teachers within eight months this year. These are graduate teachers. We lost them because of the TB/HIV/AIDS problem. So we feel that these other funders -- we have the CDC working in the area -- we feel that they need to do more.

Joshua Formentera, Philippines

First, there are more people aware that the intervention of care and treatment and advocacy is a stepping stone for people to get involved. So a lot of people are making a change in their way of thinking now. Second is the availability of generic medications. A lot of our people who could not afford to buy medications before are accessing these drugs.

Care and treatment has to be set as a priority. People come around voluntarily when you say there is a treatment available. Some health workers never talk about ARV, because there's an issue of not knowing about it, and it is so expensive, which adds additional depressions to people who are ready to access it.

Rene Roa-Flores, Argentina

Nothing has changed. Nada. We have antiretrovirals and we even have the latest generation of them -- in the cities; in the country, where we work, it is a different story. These are not covered by the public national health program, but we do have a private national health program that covers them. But what has happened is that the economy has gotten much worse; nutrition has gotten much worse; and that quality of life has gotten much worse.

We work in the rural areas. In Argentina, someone could be 400km away from an HIV clinic. We need to improve their quality of life and find ways to get to the people we're concerned with. We don't have the money to accomplish the necessary logistics. We need an airplane.

Heidi Nass, U.S.A.

For treatment naive people, the simplification of regimens is a big deal. Sometimes I hear people dismiss those issues in community advocacy meetings, but when you talk to people in the exam room, they ask how many pills, and how big are they; are they capsules or tablets; do I have to take them with food? There are very practical concerns that I think we sometimes undervalue.

We've got to come up with much better ways to manage salvage therapy. It's astounding. In our clinic, we are seeing double-boosted PIs (protease inhibitor), which seem to have come into vogue. I certainly see physicians using it in their salvage situations. It's really a tough thing when you've got someone with a really low CD4 count and then the good news is you get a response, but the bad part is you start having to look for all the immune reconstitution effects, which we see. And then you have to start treating all of these sometimes very intense and violent OIs (opportunistic infections) that appear. At the same time the person is on a regimen that, frankly, is difficult to manage in the best of circumstances, and even then getting a mediocre response. For people who are assessing a lot of issues, including quality of life, what is worth what? It's really frustrating to watch. Now that I work in a clinic I see people over and over. A lot of people, unfortunately, are coming to our clinic several times a week, given what's going on with them. The more up close you are to somebody in that situation, the more frightening it is, because you can watch it become more and more tenuous before your eyes. And it's one person after another after another. Salvage is a really difficult one.

Nelson Vergel, U.S.A.

I've seen improvements in treatment advocacy. We're including more people like me around the table when we talk to drug companies. I think the introduction of Fuzeon and now tipranavir is expanding the possibilities for salvage patients. So is a renewed interest in that field. I think the lipoatrophy field has changed, with Sculptra coming in. People want to talk to me a lot about that. But a lot has gotten worse, like funding, the waiting lists for ADAPs (AIDS Drug Assistance Programs), and no new drugs have been approved this year.

I want to push the salvage agenda; teaching patients that going on sequential monotherapy is not the right thing to do. That's a big goal for me. With the entry of Tibotec, I'm very excited because we're going to have a company with two new agents for use in salvage therapy. And personally, my main goal will be to educate people about multi-drug resistant HIV and about their options.

Rajiv Kafle, Nepal

Treatment has started in the past year. There are also more groups coming out and more groups being formed. At the same time we who are based in the cities and have some reach with the policy makers and the donors are pressurizing the donor communities and the funding mechanisms to put more money on the smaller groups so that they can be sustained.

The scaling-up of treatment as well as care and support groups being funded are priorities. The people who know how to create support groups live in the city, but Nepal is many regions and we need to get support groups funded all over Nepal.

Anjan Amatya, Nepal

In the past year I see a great deal more involvement of people living with HIV/AIDS in workshops, seminars and meetings. Also we see many more NGO and donor agencies in Nepal asking for workshops on HIV and we have many more people living with HIV involved in those.

In the next year, I hope to see more of the same but moving out of the city to the rest of the country.

Ramkumar Thankiah Selva, India

The HIV prevalence has been reduced in my area. In my particular district, in the past year, we can strongly say, only one person we found positive. We ran a large VCT campaign last year among sex workers and we took a random sample of 300 and only 3 were HIV positive. Also, the stigma is reduced and the local people are understanding that we can support them.

Still we need some support for the children. The local people are doing some support but we need more.

Dario Abarca, Ecuador

In the last year the political view has changed, but nothing more. They have changed what they say, but nothing has really changed. The Global Fund proposal was approved in 2002, but in 2004, we have no money. Sex workers maybe have better access to health services now. They also have better access to condoms and information. That's very good.

The NGOs and the Global Fund should go away. It's not good with them in Ecuador. There is constant fighting between the NGOs over everything and with everybody. Also, Ecuador is a very corrupt country. We are afraid of what is going to happen with the Global Fund, because the NGOs also have the same problem of corruption.

Yulia Chorna, Ukraine

Our achievement in the past year is that our clients coming to our needle exchange point do not use dirty needles. For example, almost all of the clients that we work with for more than a year always try to have clean needles and condoms, and that is our influence on these clients. New people that become injection drug users, of course, at first they do not understand. But our workers try to explain to them and make them understand why it is very dangerous. Our achievement is that our clients do not use dirty needles.

Shirke Rajendra Arjun, India

Government has started training programs and they have been involving positive people in decision making. Most of my colleagues are on the governing boards of the government policy making groups.

I think the media campaign the government did previously was absolutely wrong. They have to come up with a good strategy involving positive people. There are things the government should be doing to help the positive people's organizations. They are afraid that if positive people become strengthened, then tomorrow they will stick out their heads and make demands. So they don't want that.

Tamara Gvaramadze, Georgia

People are talking about HIV/AIDS more; the general population. They are more interested and less afraid. And that's great because that's how knowledge and understanding work. This is so important for people who are infected because they have to face these problems everyday ... everyday. And when they feel things improving, they will be encouraged to start getting better.

I think most urgent would be to start connecting TB with HIV because this is at zero level, so far. There are no NGOs working on this; there is no information about TB co-infection. We did not discuss it in our communities; we were not aware of it. We need to talk about it to our target populations next year then start talking about it to the general public.

Repression of Blue Diamond Society in Nepal

We started Blue Diamond Society in 2001 to support the human rights of homosexuals and sexual minorities in Nepal. But this year it has been very tough. It is because we are becoming more successful and more visible and a lot of people joined us and we are also being more visible.

Usually, attacks on metis (feminized males) or gay men are not premeditated or coordinated by the police. It is usually a few police officers on the street corner somewhere who take advantage of people unfairly. But this year there were 39 people from Blue Diamond Society who were rounded up and arrested. This was well-planned and coordinated by the police. It means they don't want homosexuals coming out and demanding their rights. They think it is an anti-cultural and anti-social sort of activity and they think it should be suppressed and kept down. So our people were taken and kept for 13 days, detained without any charge.

-- Sunil Pant

U.S. advocates were interviewd at a meeting of the AIDS Treamtent Activists Coalition (ATAC), in Washington, D.C., on October 29, 2004. International advocates were interviewed at the 3rd International TB/HIV Community Mobilization Workshop, in Paris, France, from October 24 to October 28.

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This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.
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