The Vancouver Initiative for AIDS Innovation

I was 16 when I first became involved with HIV-related issues, volunteering with Planned Parenthood in Washington state, USA. Since then I’ve worked with AIDS organisations in Vancouver, Cambodia and South Africa.

I’m now 24. What’s changed over the past eight years?

I’ve seen a marked shift in the way that the world, and those living with HIV, understand AIDS. The virus that was once a death threat can now be understood as a chronic, manageable illness. It does not have to decimate entire families, villages, countries and continents.

Eight years ago, increasingly economical and effective anti-retroviral drugs (ARVs) were just beginning to reach widely into Africa, where I now work. After continued battles with drug companies, the political, economic and scientific climates began to shift, despite reluctant governments and those intent on protecting profits rather than saving lives.

Companies were shamed into cutting ARV prices in poorer countries highly impacted by HIV. Governments, under pressure from rising death rates and from strong civil society, increased access to testing, treatment and care, and focused on those most affected by the virus – women and children. Trade agreements and patent rules were bypassed, to speed generic drugs into the market, which increased supply and therefore lowered prices. More money and brainpower were pumped into new ARVs with fewer side effects, and into generic rather than brand-name drugs.

As the numbers receiving ARVs climbed, waif-thin skeletons became a diminishing reality. Stigma and discrimination began to subside, as those who were previously considered the walking dead began to re-emerge into society, taking jobs and an active part in community life.

Donor governments – again largely in response to civil society – pledged billions of dollars, especially through the Global Fund to Fight AIDS, TB and Malaria. The US government’s PEPFAR programme, the Clinton Foundation and the Bill & Melinda Gates Foundation also helped get treatment into the hands of millions.

These programmes seem to have worked incredibly well. In the past year the Global Fund has released numerous reports of reduced sickness and death, lower mother-to-child transmission, and better overall health, since it started in 2002.

In South Africa, where I now live, you don’t need to read reports to understand the impact of ARVs. You can simply look at the hundreds of thousands receiving treatment today who would otherwise likely no longer be with us.

I work in Cape Town with TAC (the Treatment Action Campaign [insert link]), a non-profit that focuses on access to treatment, where I’m assistant editor of its magazine Equal Treatment

TAC works across South Africa, in many districts facing dire economic, health, and social conditions – high rates of rape, unemployment teetering around 50%, few clinics and fewer hospitals, and widespread tuberculosis. TB is of particular concern for those with HIV, because their damaged immune systems cannot easily fend off another severe infection.

Stigma and discrimination has been especially rife in South Africa, thanks largely to past government inaction and incompetence which resulted in unclear information, few positive-living campaigns, and little access to ARVs.

But over the past decade ARVs have allowed South Africans to talk more easily about HIV. It is increasingly common knowledge that ARV treatment makes people less infectious, which greatly reduces stigma.

TAC’s “HIV positive” T-shirts are worn with pride. Those living with the virus, their families and friends, now increasingly see HIV as a part of day-to-day life rather than something to be shunned and feared. Thirty years into the epidemic, we are making incredible inroads, thanks to millions of hours of hard work by dedicated individuals.

Yet today, these hard-fought gains are on the verge of being revoked. In New York in October 2010, donor nations will decide how much money they can give the Global Fund for the next three years. The fund’s head, Professor Michael Kazatchkine, is predicting a severe shortage.

Advocates fear that funding will at best be “flat-lined” – meaning that enough money will be given to sustain those already on treatment, but not increased in order to scale-up access for the millions more who need it. The worst case scenario, which many fear may soon be a reality, is that people currently receiving ARVs will have to pay for these medications out-of-pocket—an impossible scenario for most Africans—or that the payment burden will be placed on domestic governments who are not economically able to sustain treatment targets.

PEPFAR has already announced flat-lined funding, telling recipient countries not to place even one more patient on treatment unless another dies. Stories of empty drug shelves are popping up across Africa and other parts of the world.

Donor nations defend flat-lined or reduced funding by citing the global economic crisis; the need for greater domestic government accountability; an increased focus on prevention rather than treatment; and the “unsustainable” cost of growing access to ARVs.

In some ways, these are valid concerns. Corruption, mismanagement and poor leadership do plague many countries, and governments should of course do all that is possible to protect their own people.

But saying this disregards the obvious reality – Africa is poor compared to North America and Europe. I say this not to perpetuate the grossly exaggerated notion of Africa as a starving, inept, crippled continent. But in strictly economic terms, African countries do not have the same access to the funds as do their neighbours to the north.

HIV is all but under control in North America and most of Europe, save for pockets of still-marginalised communities. But it continues to ravage Africa, largely because not enough resources are currently available.

ARVs are not perfect. They are expensive, sometimes have severe side effects, and have partially-unknown long-term health impacts. But they are, at the moment, the best chance we’ve got for beating one of the greatest killers in Africa.

Much of the increase in international funding and treatment over the past decade has been the direct result of citizens’ campaigns for ARVs. Organisations like TAC, Act Up! and Health Gap have successfully campaigned for nations like South Africa to take political and economic leadership on AIDS. And they have encouraged rich nations like Canada to pledge funding.

Yet in an ironic twist, just when treatment has proved to be effective, and when stories of dying children, mothers and communities make international news with less frequency, the North’s interest in AIDS is diminishing.

This so-called AIDS fatigue is weakening much needed action. Decades more money, political support and action will be needed to effectively tackle one of the most devastating epidemics of our modern era.

As I look back on my past eight years, I know this is not the time for complacency but rather for increased passion and commitment.

We are winning. We will win. But we have not won yet.

© Mara Kardas-Nelson