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Liz McGregor

@ Sunday Times Books LIVE

When activists took on Big Pharma and won

THE government funds antiretroviral (ARV) treatment for 3.1-million HIV-positive people at a cost of R40,000 per person a year in the largest and most ambitious ARV programme in the world. HIV, once the harbinger of death, is now just another chronic disease.

The extraordinary tale of how this was achieved is told in the book No Valley Without Shadows: MSF and the Fight for Affordable ARVs in SA, to be launched next week. It is the inside story of how courage, cunning and determination overcame the combined might of global corporate greed, government denialism and the conservatism of the medical establishment.

THE current state of affairs could be said to hang off a single courtesy phone call. In 1999, Dr Eric Goemaere, a long-serving Medecins sans Frontieres (MSF) volunteer, came to SA hoping to prove that ARVs could safely be given outside of a first world hospital setting to poor HIV-positive expectant mothers so they wouldn’t infect their babies.

It almost didn’t happen. Goemaere’s first stop was at the office of Dr Nono Simelela, the national director of the HIV programme, who reluctantly broke the news that the health minister had blocked the public sector use of AZT to prevent mother-to-child transmission of HIV.

About to fly home to Belgium, defeated, Goemaere put in a last-minute courtesy call to an e-mail acquaintance, the activist Zackie Achmat, who had started the Treatment Action Campaign (TAC) the year before.

Achmat revealed that a limited mother-to-child transmission pilot study was under way in Khayelitsha, on the outskirts of Cape Town.

In partnership with the University of Cape Town, MSF set to work in Khayelitsha, systematising the pilot study to ensure it was sufficiently rigorous to convince an ambivalent medical community.

However, they soon became frustrated that, although they were able to save babies’ lives, they were unable to save their parents.

Dr Francoise Louis, a French doctor who hoped to share her skills, described it like this: “I witnessed the introduction of ARVs in France and what it meant to people. When I discovered the impossible levels of HIV in Southern Africa, I became obsessed.”

BUT without ARVs to prescribe, she felt useless. “How does a clinician feel if, whatever you do to care for your patient, he comes back sicker; the wretched headache does not go away; the excruciating diarrhoea does not stop? The situation was inhuman for them. It was inhuman for us, who knew that a treatment to keep them alive was available,” she said.

The struggle to save the lives of poor, powerless people at the tip of Africa might have gone unnoticed by the wider world if it had not played into a broader agenda then being implemented in the boardrooms of the first world.

In 1995, the World Trade Organisation started enforcing Trips, the Trade Related Aspects of Intellectual Property Rights. This compelled all member countries — including SA — to introduce 20-year patents on medicines. This meant that ARV treatment cost between $10,000 and $12,000 per person per year.

In an attempt to circumvent this, the government introduced the Medicines and Related Substances Control Amendment Act of 1997, which would allow the health minister to cancel patent rights or import generic medicines.

The Pharmaceutical Manufacturers’ Association, representing 39 companies, lodged a challenge. In a landmark case that became known as Big Pharma vs Nelson Mandela, the global drug industry made it quite clear that it would fight to the last to protect its profits, even it translated very tangibly and publicly into the loss of thousands of lives. The case dragged on for three years, with no end in sight.

Spotting the perfect opportunity to highlight the high cost of ARVs, TAC joined the case as amicus curiae (friends of the court), presenting a powerful dossier of evidence on the human impact of patent protection.

Together with MSF, they launched a highly successful international campaign called Drop The Case.

When it became clear how damaging this was to their image, the pharmaceutical companies withdrew their case.

MSF underwent seismic changes as a result of the struggle for affordable ARVs.

Its model had always been the provision of emergency medical intervention. Now, it was being asked to fund long-term treatment for possibly thousands of patients.

For the first time, an MSF board would be making a financial commitment that would extend beyond its own tenure and place an obligation on its successors.

INITIALLY, it agreed to fund 180 patients. This led to agonising decisions having to be made by doctors in Khayelitsha: who should be given life-saving treatment and who should be left to die? The pressure for universal, affordable ARV treatment intensified.

The drug companies were invited to the Khayelitsha clinic. Only one came. The chairman of Boehringer Ingelheim arrived while Goemaere was treating an emaciated nine-year-old orphan, who was slowly and painfully dying from AIDS. Deeply discomfited, he offered to pay for the boy’s treatment personally, but confessed that he did not have the power to change his company’s global policy on patent protection.

The response from another pharmaceutical company, Bristol-Myers Squibb, revealed a surprise. While it had the licence for the antiretroviral stavudine, the patent was owned by Yale University. A direct approach from MSF to Yale was stonewalled by the university, which was earning $40m a year from the stavudine licence in 1999.

The activists sprung into action. A couple of first-year Yale law students tracked down the inventor, Dr William Prusoff, who wrote a stirring letter to the New York Times reflecting on his position as a scientist contributing to the discovery of a life-saving medication and then witnessing how commercial interests were protected so stringently that those in need of it were denied help.

Yale caved in and Bristol-Myers Squibb announced “emergency patent relief” shortly afterwards.

A year after initiating the first patient on ARVs, the Khayelitsha team believed it had enough material to prove to the medical establishment that resource-poor clinics and nonspecialist staff could effectively deliver ARVs.

Several reputable journals turned them down, either for fear of offending the pharmaceutical companies or out of prejudice.

But when the findings were eventually published, they were explosive. After two years, 91% of patients were taking their medication as prescribed and had an undetectable viral load.

The struggle then entered a new phase — forcing the government to implement treatment for its citizens.

TAC played a critical part. The first really effective post-apartheid civil society organisation, it fought stigma, empowered the HIV-positive and shamed the government.

TAC set the bar for the vibrant civil society movement that exists in SA today.

• McGregor is co-author of No Valley without Shadows: MSF and the Fight for Affordable ARVs in South Africa. Published by MSF, it will be launched at the Book Lounge, Roeland Street, Cape Town, on November 30. All proceeds from the sale on the night will go to TAC

 *This article first appeared in Business Day



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