Twenty years ago, a group of activists came together to demand access to treatment for all people living with HIV. 1 For a long time, getting HIV was seen as an “automatic death sentence.” 2 HIV/AIDS had devastated the African continent. South Africa, in particular, faced a spiralling epidemic: the number of people living with HIV had grown from 160 000 by 1990 to more than 4.2 million by 2000. 3 That year, the number of people living in South Africa dying in their 30s and 40s exceeded those dying in their 60s and 70s. 4
Sibongile Tshabalala talking about living with HIV.
Dr. Goemaere describing how patients were treated when ARVs were not available.
But the introduction of highly effective combination antiretroviral (ARV) therapy offered hope. ARVs quickly became known as “Lazarus drugs” for their ability to resurrect patients from near death. These medicines promised to transform HIV into a chronic, manageable illness. Yet their high price meant that they were entirely unavailable in the public health system and out of reach for millions of people. In 1998, ARVs cost US$10,000 per year. 5
Demanding access to treatments, a group of activists—members of the Treatment Action Campaign (TAC), Médecins Sans Frontières (MSF) and the AIDS Law Project, later incorporated as SECTION27—helped spur a global movement that radically reduced the prices of HIV medicines. Using skilled legal advocacy, high-quality research, social mobilisation, and public education, these activists transformed the global conversation on drug pricing, making it possible for millions of people to access treatment. South Africa now has the largest HIV treatment programme in the world, with 4.2 million people on ARVs. 6
“We could not have achieved what we achieved today regarding access if there was no solidarity, if we did not have support both locally and internationally,” says Director-General of Health Precious Matsoso, who worked on medicine issues for the government during the struggle for treatment. “If there was no resolve, no civil society response and action, no international solidarity, we would be counting more bodies than we did.”
Yet despite the remarkable success in increasing access to HIV medicines, systemic problems remain entrenched. New medicines to treat drug-resistant TB, cancers, and many other conditions remain far too expensive. A recent report found that only seven of 24 cancer medicines were available in the public health system. 7 10 medicines unavailable in the public sector – likely due to excessive pricing caused by patents – were available in India for a fraction of the private price offered in South Africa.
“For cancer, we are where we were in the beginning of the 90s for HIV,” says Dr. Eric Goemaere, a physician with Médecins Sans Frontières who pioneered HIV treatment in South Africa. It’s considered “too complex, too expensive. People don’t want to look at it.”
A lack of political will persists. Some policies to lower medicine prices that activists fought to keep alive decades ago, such as parallel importation, have never been used. Important legal precedents have taken shape in words and writing, but not the lived experience of real people. Most fundamentally, governments around the world remain cautious and fail to prioritise public health in their intellectual property law. Patents continue to be put before people’s lives. 8
Meanwhile, the pharmaceutical industry continues to undermine national reform efforts. Internationally, industry has even begun pushing for laws in regional trade agreements that will further restrict access to medicines.
“My feeling is that we had the pharmaceutical companies on the backfoot, against the wall in the mid-2000s. I don’t think we’ve got them against the wall anymore,” says Mark Heywood, a founding member of TAC and the executive director of SECTION27.
Sibongile Tshabalala, national chairperson of TAC, thinks a global response is needed. “We need to come together. We need to push together, to say that enough is enough with these laws. They are using the laws against the people. Pharmaceutical companies are taking advantage.”
As South Africa develops its intellectual property framework, it is worth revisiting the strategies, successes, and shortcomings of the access to medicines movement for the insights they may offer. Nearly twenty years ago, a group of activists began the fight against pharmaceutical giants and recalcitrant governments. The battle continues today. This is our story.
Fix the Patent Law March, September 2016
- Didi Moyle, SPEAKING TRUTH TO POWER: THE STORY OF THE AIDS LAW PROJECT 88 (2015).
- US Food and Drug Administration, Attacking AIDS with a ‘Cocktail’ Therapy: Drug Combo Sends Deaths Plummeting (July 1, 1999), available at https://aidsinfo.nih.gov/news/493/attacking-aids-with-a-cocktail-therapy–drug-combo-sends-deaths-plummeting.
- HIV/AIDS/STD strategic plan for South Africa, 2000-2005 (Feb. 2000), available at http://www.gov.za/sites/www.gov.za/files/aidsplan2000_0.pdf.
- TAC, Comparing Mortality in Brazil and South Africa (Sept. 26, 2016), available at http://www.tac.org.za/community/node/2182.
- Sarah Boseley, Big Pharma’s Worst Nightmare (2016), available at https://www.theguardian.com/society/2016/jan/26/big-pharmas-worst-nightmare.
- UNAIDS, RIGHT TO HEALTH (Nov 2017), p.48, available at http://www.unaids.org/en/resources/documents/2017/20171120_right_to_health.
- Cancer Alliance & Fix the Patent Laws Coalition, Exploring Patent Barriers to Cancer Treatment Access in South Africa: 24 Medicine Case Studies (2017), available at https://www.canceralliance.co.za/wp-content/uploads/2017/10/Exploring-Patent-Barriers-to-Cancer-Treatment-Access-in-SA-24-Medicine-Case-Studies-October-2017.pdf.
- A patent is a reward that is given to a company that allows it to sell a product with no competition from other companies for 20 years. Without any competitors, the company is generally able to charge what they like.