The high price of Aids denialism in South Africa
No Valley Without Shadows Médecins Sans Frontières in South Africa 1999-2008: Revolutionising the HIV/Aids response in the period of government denial
This book – launched at the Aids conference – reflects a candid exploration, from an insider’s view, of MSF’s pioneering Aids treatment care programmes in South Africa during the period of state denialism between 1999 and 2008.
The story begins in 1999 when Dr Eric Goemaere arrives in South Africa to investigate and report how he believes the medical humanitarian organisation could help respond to the Aids epidemic infecting an estimated 5 million people.
The book traces the period up to 2008, and chronicles how MSF and close allies such as Treatment Action Campaign changed the international and national agenda on the Aids response in poor countries, the medical and political strategies used, the human stories, legal battles and accusations, the programme’s influence on models of care, policy, pricing of medicines and its successes and failures.
It also explores the internal dilemma MSF faced as an independent humanitarian organisation bound to maintain neutrality but out of need required to co-operate with some but oppose others in government.
In the late 1990s in South Africa, 800 or more people were dying daily from HIV. The Aids crisis prompts outrage about the worldwide inequalities of access to life-saving antiretroviral medicines.
By 2001, Médecins Sans Frontières starts pilot sites testing medical feasibility of ARV therapy in developing countries to show that it is possible in “resource-poor” settings.
The pilot projects used cheaper, generic versions of ARV drugs to prove the affordability of ARV therapy and models of decentralised care for use in national treatment programmes.
And the method to push for generics in South Africa is dramatic.
MSF and allies illegally import them from Brazil.
MSF won the 1999 Nobel Peace Prize for its “pioneering humanitarian work on several continents” and its “rebellious humanitarianism”.
With its new potential legitimacy (and responsibility) and a bit of money, it invests in a campaign to close the global gap for access to medicines, the Access to Essential Medicines Campaign (Came).
MSF employs a group of multi-skilled smart MSF campaigners in key countries around the world.
A combination of the work of MSF visionaries in South Africa, advocacy by the Came, unflappable health and Aids activists, unexpected “bedfellows”, using the law and breaking the law and individual determination of people living with HIV/Aids makes Khayelitsha a model of Aids care in less developed countries.
While the book tells the story of highly visible, visited and documented (by others) Aids programmes in Khayelitsha and Lusisisiki in South Africa, the messages and lessons are as relevant today as they are timely. Today urgently needed Aids funding is diminishing.
The new sentiment is that HIV has had enough attention, when in fact still one third of people (5 million people) who need antiretroviral medicines to survive still need them.
Approximately 4 million people are on ART in low- and middle-income countries and they require the drugs for life (UNAids, 2009).
Not only in South Africa today are Aids programmes experiencing drug stock-outs. MSF and doctors in South Africa faced the same grave realities in 1999 with life-prolonging ARV drugs priced out of reach, despite the spectacular fall in price of ARVs because of generic competition.
Now, MSF doctors are in the untenable position again of telling some patients that the medicine is simply too expensive or unavailable.
Ten years after the first people were started on ART (May 2011), Khayelitsha remains a crystal ball as it has one of the largest and oldest cohorts of patients on ARVs in sub-Saharan Africa.
Fifteen thousand people today are on ART in Khayelitsha.
The final chapter, written by Goemaere, who launched MSF in South Africa and remains here fighting for patients, reflects on the accomplishments and failures of its ARV programmes, the universal lessons and also the threats today.
It highlights how easily successes in favour of the global poor are dismantled in favour of greed.
Goemaere describes how he found himself 10 years ago telling patients that there was no affordable treatment available and how he now has to say the same thing to some who need second-generation ART that is priced out of reach.
The story is also a testimony about the human and humanitarian impact of a disease that was buried for years by stigma, discrimination and state denial.
“Public health researchers in South Africa and at Harvard University have independently investigated the effect of Aids denialism.
“Their estimates attribute 330 000 to 340 000 Aids deaths, along with 171 000 other HIV infections and 35 000 infant HIV infections, to the South African government’s former embrace of Aids denialism.” (Wiki, Harvard Science 2008.)
The book also tries to honour all the women and men affected by Aids in South Africa and their supporters who had the courage to confront not just the impact of HIV/Aids itself, but to confront the pharmaceutical industry and their own government.
Pragmatic and passionate risk takers with a common goal demonstrated that a life-threatening epidemic and government neglect could be tackled.
* Médecins Sans Frontières is an international, independent medical humanitarian organisation that delivers emergency aid to people affected by armed conflict, epidemics, health-care exclusion and natural or man-made disasters in more than 70 countries. In 1999 MSF was the Nobel Peace Prize laureate.