ASIA RUSSELL, Health Global Access Project
Wednesday, March 26, 3-4 pmEST

Connie Chow: Hi all and welcome. My name is Connie Chow, and I'm on the Steering Committee of the Women's Human Rights Program at Amnesty International USA. I will be moderating today's conversation. First of all, thank you to Asia Russell joining us on this chat.

Asia Russell: Thanks for having me.

Connie Chow: Many organizations, including Health GAP, Physicians for Human Rights, Amnesty International, have urged the White House to support the Global Fund for AIDS, TB and Malaria. Instead, the White House recently approved an AIDS Initiative that would provide $10 billion over the next 5 years, and only allocated $200 million dollars annually for the Global Fund. Why do you think the White House is reluctant to support the Global Fund, and what impact would this have on the AIDS crisis?

Asia Russell: Unfortunately the White House's refusal to contribute its fair share to the Global Fund, which is now 2 years old, is up and running, and is in dire need of donations to continue doing life saving work, will definitely make matters worse. The Administration claims the Global Fund is "unproven," but this is hard to swallow--it's a critical response mechanism, and the Administration needs to help pay for it. The Global Fund is an independent institution that activists fought for because there needed to exist a new, nimble, emergency response to the AIDS crisis in poor countries. And frankly, the existing paths for what measly amounts did exist, almost universally ruled out funding antiretroviral treatment. Now we are in an extremely exciting time; the White House AIDS plan could very well be a turning point. Because of pressure from activists and people living with HIV and other experts of all types, the White House was forced to restructure the U.S. response to global AIDS, and commit this money, which breaks out to $2 billion each year--still not enough, but definitely a step forward. The danger is that the U.S. continues to undermine the Global Fund, providing cover to the other donor countries, who also aren't giving their fair share. The upcoming G7 meeting in France in June, and before that the World Health Assembly of the WHO in May, will be key times for activists to bring increased pressure to bear on the U.S. and on other donor countries to fund the Global Fund.

Kevin: How have your experiences working with ACT UP in Philadelphia helped you with your work to get better access to low-cost AIDS medicines for developing countries?

Asia Russell: Throughout the history of this crisis, people living with HIV have had to fight and struggle at every step to achieve real progress and to achieve their goals--there was a time when this disease was ravaging communities in the U.S., and our president, Ronald Reagan, refused even to say the word AIDS. That was at the same time that researchers and analysts in the CIA were projecting that this new disease would result in about 50 million people infected by 2000--they weren't very far off.

But the response from government took so long, only came when pressure from activists became unbearable politically, and is to this day shockingly inadequate when you consider the scope of the AIDS disaster. One is forced to conclude that the lives of these people didn't quite matter.

So, my experiences have reinforced the very basic idea that real progress doesn't come without some struggle. But there is quite an immense benefit yielded by such efforts--for example, as a result of this social movement in the U.S., there have been tremendous victories for people living with HIV, spilling over to other patient groups and consumer movements, as well.

When AZT first came on the market, and was one of the most expensive drugs ever marketed, folks said treatment was impossible in the U.S., and that people living with HIV should simply die. People living with HIV got organized, and resisted. When therapy became widely available in rich countries at $12-17,000 per year in the mid 1990s, folks said that treatment for the 95 per cent of the world's people living with HIV, who reside in poor countries, was just impossible, and that a double standard for HIV disease management--one for the rich and one for the poor--would have to be accepted. And instead of accepting this idea as a logical, if harsh, reality, people fought back.

Donna: Are their any governments that are playing a leading role in bringing low-cost care and treatment to developing countries? Which governments are creating the largest road blocks and why?

Asia Russell: The commitment of governments--donors and recipients--is absolutely key. But the stinginess of the tremendously wealthy donor countries, the U.S. in particular, have been a major roadblock to combating this crisis, and that has, unfortunately, reinforced the ambiguity of many developing countries in responding. Important programs are underway in Nigeria, in Botswana, in Thailand, and elsewhere. But because of the extraordinary, unduplicated scope of this crisis, these programs just can't make the real dent that is needed without massive influx of money from rich countries.

Even without the donors committing their fair share, governments have been pressured to launch programs that have been effective--a key ingredient is ensuring people living with HIV are full participants in shaping and implementing any intervention. For example, the U.S. and other governments have for years insisted that providing antiretroviral treatment to people living with HIV in poor countries is not cost effective, when if you had asked any person with HIV, or her family, or her loved ones, you would have received a very different, more accurate answer.

Fariba: What can I do to help the AIDS crisis? I am college student who has access to the internet anytime so maybe that is an advantage. Otherwise, I don't make much money working as a server on the weekends, so unfortunately I can't help by donating much money. What else is there out there for people in my situation who want to make a difference?

Asia Russell: The good news is, there is a lot you can do. The AIDS crisis is an overwhelming catastrophe. But we are living in a time when we are within reach of making a real impact--and it will take the work of all sorts of people who have many strengths and skills, to help us win. You can work with activist and policy organizations like Health GAP to keep in touch with action alerts, lobbying efforts, protests, and other actions and campaign work. Our website is http://www.healthgap.org.

One key battle right now is in demanding an adequate contribution from the President to the global AIDS struggle. For example, we are trying to ensure that Congress pass Bush's $75 billion wartime emergency supplemental request with an amendment that includes money for the Global AIDS Fund for 2003. Many people feel that if this Administration is going to spend billions to kill people at war, it should invest the modest amount needed to save lives. But Congress and the President won't make that decision without pressure from people like you.

james m nordlund: Hello! If the roots of lack of compassion for the diseased and the en vogue economic tool war, one being psycho-pathic greed, aren't addressed in Western societies sociological programming of their populaces, won't the corporate structure's convolution's devolutionary direction eventually determine more apathy and social pathos in global society; ergo less funding for prevention, treatment, and research into curing AIDS, in the longrun?

Asia Russell: You have touched on several systemic problems that, like sexism and racism in our society, have had direct and indirect impact on the AIDS crisis. We must keep these deeper problems in mind, but also have to focus on what we can achieve in the short term--so people with HIV are alive to fight for a more just society.

I agree that the very expensive war on Iraq, which will create many public health and human rights problems in its wake, will also draw resources and attention away from AIDS. In fact, US Secretary of State Colin Powell has even acknowledged that AIDS is a grave threat to national security--but the U.S. is still not mobilizing the money and other resources on the scale and with the urgency needed to save lives.

Connie Chow: Asia, you have previously worked on healthcare justice for US prisoners. What do you see as the most important barrier to treatment for prisoners with HIV/AIDS? What difference, if any, is there between the access to healthcare for male and female prisoners who are infected with HIV?

Asia Russell: There are clinical barriers to care, and barriers to care that originate from policy decisions. Rates of AIDS, HIV infection, hepatitis C, and other serious chronic illnesses are higher in inmates than in the general population. But prison health care is a place where corners get cut all the time in the name of austerity and being "tough on crime." There are all sorts of economic and political rewards in corrections systems for denying inmates access to care. So we see serious lapses in care for HIV positive inmates, which is a basic violation of rights, and separately, has public health consequences when inmates return to their communities.

Rates of HIV among women prisoners are significantly higher than that reported among male inmates. A disproportionate number of women are incarcerated because of drug related offenses, or for sex work, and vulnerability to HIV infection is of course linked to these situations. So the problems can be more acute for women inmates, because there are simply more of them living with HIV. Women's access to quality reproductive health care and prenatal care is often dangerously poor in U.S. jails.

Also, women inmates are often vulnerable to sexual violence by guards and others who have power and authority in prisons and jails. Inmates are folks who have epidemic rates of surviving sexual trauma from rape and sexual assault _before_ being incarcerated.

Because of illogical and inhumane legal restrictions we place on ex-inmates, as well, such as denial of access to housing subsidies, access to entitlements like food stamps, denial of the right to vote in some cases, women and men ex-inmates don't usually have the luxury of prioritizing attention to their HIV disease once they get out. There are too many roadblocks for them to navigate, so health care takes a back seat. Women coming out of prison are often very concerned about rebuilding and caring for their family, and so additional burdens created by the state that make it difficult to get safe housing, get food to eat, and get a job disproportionately impact women who are ex-inmates.

Pat: What kind of medication is most needed now?

Asia Russell: At least 6 million of the 40 million people with HIV worldwide need access to antiretrovirals now--they are sick enough that they are clinically indicated for that sort of treatment, or else they are at risk for rapid disease progression and death. Drugs are often priced too high to be accessible for poor people living with HIV, and the U.S. and big drug companies have a history of promulgating patent rules that prioritize patent rights for drug companies over the right to medicines access. Limited resources are often wasted treating fewer people with expensive, brand-name drugs, when cheaper generics could be available.

Many different types of medicines are needed--not only antiretrovirals--but because these medicines have had such a dramatic impact on the lives of people with HIV in the US, Japan, and Western Europe, and because they are the cornerstone of clinical management of HIV disease in rich countries, they warrant specific attention. Medicines for the opportunistic conditions that people with HIV who have compromised immune systems often get--tuberculosis, pneumonias, etc.--are also in short supply in many resource poor settings, but they are only one part of a comprehensive treatment response.

Carl: According to Amnesty International, discrimination is linked to women's experiences with HIV/AIDS. Have you personally witnessed this? How does one address this problem?

Asia Russell: Signs of this fact, unfortunately, are all around us. Why don't we have effective, cheap, women-controlled prevention methods, after twenty years of AIDS? Why did it take years of struggle to force the FDA even to begin to request that clinical trials be structured so sex-specific affects of treatments might be discovered before the approval of a new treatment? The needs and demands of women living with HIV and women at greatest risk of infection simply haven't been prioritized during the course of this pandemic, now more than two decades old.

Women in many countries are becoming infected with HIV at higher rates than men--global AIDS in fact is a women's disease. We live in a world where women are considered less valuable to society than men. This social fact stains all sorts of other issues, which in turn relate to one another: women have less economic autonomy than men, and are at greater risk of poverty, and increased poverty means increased risk of HIV. Women are very often unable to exert any sexual freedom, and of course that includes the inability to insist that men use condoms during sex. Women are expected and are called upon to prioritize the needs of others--in their families and their communities--first. In the midst of crushing poverty, women with HIV are all to often the last to go to the doctor, the last to eat, are the last to use money to buy medicines.

We must recognize that these are not problems that simply appeared when the AIDS crisis appeared. AIDS is the greatest test of our ability to win real goals in the struggle for gender equity and justice, however.

The goals and needs and agendas of women living with HIV should be prioritized if we are to grapple successfully with these problems. The social realities created by a society that values women less than men also must be foremost in our minds as we design prevention, care, and treatment interventions--so we aren't replicating the systems of discrimination we should be working together to dismantle.

Alfred: Do you have any suggestions on effective arguments for increasing AIDS prevention support funding, and cutting counterproductive restrictions (ie gag rules)?

Asia Russell: The area of AIDS prevention -- as in the area of AIDS treatment -- is an important example illustrating the human costs of under funding. Without sufficient funding from government for effective science-based interventions, HIV prevention efforts with fail. Government can pay now or decide to pay more later.

The conservative backlash again comprehensive prevention -- that is the ideology that calls for abstinence as a sole prevention method -- leaves many vulnerable populations at risk. This backlash has been blocking access to condoms for young people, access to sterile syringes, etc. These and other interventions are all proven to reduce HIV incidence.

There is no easy answer to the question you raise -- how do we stop this backlash. However, it is very effective for people living with HIV to draw attention to the consequences of the anti-prevention agenda of many Administration decision makers. We need to point out how dangerous and illogical these policies are. It is snake oil science deployed to appease reactionary groups and we need to be very public: writing letters, staging press events, pressure members of Congress, correcting inaccuracies in the media when they occur, etc. All these are just a few examples of the interventions that are necessary if we are to change their actions, if not their hearts and minds.

Connie Chow: Let's imagine that the WTO adjudicated favorably towards developing countries and allowed local pharmaceutical companies to produce and provide AIDS medicine at affordable prices. What parallel strategies would have to be in place to ensure that these drugs are accessible to everyone who needs it to effectively manage the AIDS crisis?

Asia Russell: What we don't want is a situation where only the elite in poor countries ever get access to medicines, or only people who are city dwellers. Right now this problem is not the most urgent, of course--currently only a handful of the millions who need AIDS medicines are getting them, period.

But extending resources to rural areas, to men as well as women, transgender communities, and children, to creating truly equitably access, these will be key challenges as we win more money from donors, as providers get more skilled in managing HIV in poor countries, and as we begin to move forward.

There must be a commitment to build programs designed to respond in very resource limited settings. Many people recognize that there is still some nascent infrastructure, even in desperately poor situations, that can absolutely be used to implement and sustain and expand treatment access programs. There must be a willingness among the organizations running projects to solve problems, a willingness to be directed by and accountable to the needs of people with HIV and their communities, and to work as quickly as possible.

Connie Chow: Thanks Asia for taking the time to share your thoughts with us today. Thanks also to all those who joined in the chat. We would appreciate your feedback about the chat. Please go to http://www.advancedsurvey.com to take a 2 minute survey. On the website, enter 4130 under "Take a Survey." Thank you very much for your participation and feedback.

Asia Russell: Thanks for all your questions, today, and the chance to be a part of this chat. For more information, feel free to contact me at asia@healthgap.org and go to www.healthgap.org.

Connie Chow: You mentioned that the HIV/AIDS struggle here has benefitted other patient and consumer groups. If I may frame it in human rights terms, securing the right to health(care) of one group has raised the bar in society for the right to health to all. In what other ways do you think the explicit use of this framework might benefit the struggle?

Asia Russell: A human rights framework is definitely useful in some cases--many people can relate to the concept of fundamental human rights when they hear or see people demanding the realization of these rights. However, the framework of social justice might be more applicable in this case. That is to say, people with AIDS need not just the realization of their right to health, but they require justice for wrongs done to them.

I believe that a human rights framework benefits the struggle because it helps people relate to that which is otherwise foreign. But that framework is more useful when nested within an overarching demand for social justice.

Jeanette Voss: What motivates your activism on this issue?

Asia Russell: When I first began meeting and becoming friends with people who were HIV positive, when I was a teenager, I began realizing that AIDS activism was a ripe place for social justice work that deals with racism, sexism, and homophobia at once. This was the sort of activism I was most interested in--ironic considering many people feel AIDS activism is stunted in that it is "single issue" activism. In fact, the movement against the AIDS crisis is the greatest test of the strength of our efficacy as activists; as the AIDS pandemic is the greatest test of our humanity and the strength of our will.

Connie Chow: Thank you so much, Asia, for your time and for sharing your experience and knowledge. Most importantly we thank you for your dedication to securing the rights and well-being of those who suffer from HIV/AIDS. May you have many more successes.

Asia Russell: