While in Rio de Janeiro, Brazil, for the recent International AIDS Society Conference, DAVID MENADUE caught up with two treatment activists who are helping to make a difference with treatments access for people with HIV in developing countries. One works for the World Health Organisation on the ‘3 by 5’ initiative; the other is an Brazilian activist and one of the early leaders in generic production of antiretrovirals for developing countries.

Ian

Melbourne-born Ian Grubb is a former employee of the Victorian AIDS Council who now writes policy papers and media statements for the director of the HIV/AIDS program of the World Health Organisation (WHO) in Geneva, Switzerland.

With partner Craig McClure, Grubb established the Ontario HIV Treatment Network in Canada in the late nineties to help HIV community groups build capacity around health and treatments following the introduction of HAART. Further work with the International AIDS Vaccine Initiative brought him to the attention of WHO officials who asked him to work for them at a time when HIV/AIDS – especially antiretroviral treatment – was finally getting on the radar of the United Nations and its coordinating agency, UNAIDS.

In 2001, a major international summit of HIV activists, governments and UN officials called the United Nations General Assembly Special Session on HIV/AIDS (UNGASS) decided that it was time that efforts were increased to expand treatment access for people with HIV in developing countries. A landmark paper by WHO director Bernard Schwartlander costed the proposals agreed to at the meeting at US$10 billion per year, leading WHO to establish the target of treating three million people with HIV in developing countries by 2005 (or the “3×5 initiative”, as it came to be known).

Six months later, Grubb went to work with Schwartlander.

At the International AIDS conference in Barcelona in 2003, activists placed lots of pressure on WHO officials to develop a coherent plan to achieve the “3 by 5” target. Grubb was one of the key players in writing up the plan to roll out treatments, get commitments from funders and prepare the affected countries for implementation.

“In mid-2005, we have one million people on antivirals in developing countries, which is less than the goal,” said Grubb, “but it was always only a target. What is important is that we have a real momentum now for countries to build up their health systems to provide treatment, and to increase their numbers on treatment markedly over the next couple of years.

By focusing on the 50 countries with the highest HIV burden, the WHO has been able to triple the number of people on treatment since the plan was started 18 months ago, and the organisation now hopes to reach the target of three million in the next year.

“While this is far short of the estimated six million in need, we can do more with new resources and continued effort,” Grubb explained. “The recent G8 commitment to universal access by 2010 in an incredibly important signal that there is now no turning back on treating people with AIDS in poor countries.”

“The US President’s Emergency Plan for AIDS Relief (PEPFAR) provided US$15 billion in much-needed funds for 15 of the worst-hit countries in Africa and Asia. If other developed countries, including Australia, could increase their contributions to international efforts, such as the Global Fund, we could help keep more people alive and well. Prevention alone is not going to curb HIV: treatments are now an essential part of the global response to the virus.”

❧ Ian Grubb will be a guest speaker at the NAPWA Conference in Adelaide on November 18-20.

Ezio

Ezio Tavora dos Santos Filho is an activist with Grupo Pela Vidda (‘group for life’), the first PLWHA organisation established in Brazil. His story of survival, from his HIV diagnosis in 1985 and despite numerous AIDS-defining illnesses, is all the more incredible given the lack of treatment access for most people in his country for many of those years.

“I was lucky that I had an income as a lawyer and also was supported by my family when I became ill in 1993 with cryptosporidiosis (an AIDS-defining illness). The treatments for the condition cost US$1200 a month in Brazil then, way beyond the reach of the average person here. I had also spent time in Germany in the late eighties and I knew that we had to do something to provide cheaper access to treatments in my country to prevent so many people dying.”

The epidemic in Brazil is estimated to include some 600,000 infected, with only a quarter of that number recognised in official figures. It began largely as a problem in the gay community in the eighties but has now spread into the broader community through intravenous drug use and bisexual transmission. (Many Brazilian men, it seems, have sex with other men without identifying as gay or as being in a risk group.)

The early AIDS response was led by the gay community (often middle class, media-savvy people with a history of political activism) in large urban centres. Grupo Pela Vidda started up in 1989. As with PLWHA groups that set up in Australia at this time, the group’s mandate was to provide a voice for PLWHA and to help the broader community understand their experience.

“We were lucky early on, in 1992 when the Brazilian Government’s AIDS director was able to secure a loan from the World Bank for US$18 million to fund our AIDS response,” he said. “Some of this money went to the community and we were able to develop a focused, collaborative response with government that is still present today.”

Many AIDS organisations have had to seek funding from various European agencies for help with the care and support needs of PLWHA, which the Government has not always provided.

But the biggest issue was getting access to treatments and finding a way around the high costs involved.

“In 1990 AZT was costing $400 a bottle for patients in Brazil; way out of the reach of most people’s incomes,” he explained. “Brazil has always had large government-funded drug companies and in 1992 one of these, Microbiologica, started producing the drug for less than half this price and, in following years, for much less.

“They then proceeded to copy ddI, ddC, 3TC and d4T and despite protestations from the big pharmaceuticals that it wouldn’t be possible, managed to re-create indinavir and saquinavir in their laboratories.”

Of course the pharmaceutical companies threatened all sorts of legal responses, but the Brazilian government backed this breaking of patents and little could be done to stop it.

“This situation has now led to the large pharmaceutical companies dropping their prices to affordable levels and our Brazilian factories are now less likely to need to break patents on new drugs as they have in the past. Recently the Brazilian government did a ground-breaking deal with Abbott [Laboratories] to reduce the cost of ritonavir for the first time for a developing country. Unfortunately Brazil cannot sell these generic drugs to other countries as the drug companies would then sue us for threatening their international sales.”

Ezio speaks, justifiably, with pride of the achievements of Brazil – and of advocacy organisations like his own for their role – in providing free treatments for all in his country. Death rates have now dropped remarkably from the 60 percent rate per year experienced in the 1990s. He is a little tired at this stage of the game (and has only recently recovered from a nasty bout of TB) and is worried that the rigour has gone out of a lot of the PLWHA movement, which he helped establish.

“People are more likely to take the perspective of the patient, rather than the activist, in their dealings with government. They take it for granted that problems will be solved and don’t follow through when they’re not. They won’t fight Government for extra money or services. It is no longer a middle class epidemic and the intellectual depth is no longer there.”

Whatever his perspective at this stage of the epidemic, I found Ezio an inspiration. To have survived personally is enough of a record but his advocacy achievements and the ‘fire in the belly’ that he still has after all these years, keeping him focused and on message are truly remarkable.

Each country has activists like Ezio and Ian who have fought governments and drug companies tirelessly for greater HIV treatment access and affordability. Those of us in countries where this approach has succeeded owe them a great deal of gratitude.