I sat on the edge of the bathtub heaving. Every organ system in my body felt as though it was being pummelled - and then some. I had a constant metallic taste in my mouth. And these drugs were supposed to be helping me?
In 2009, I was on my second course of antiretroviral therapy as part of post exposure prophylaxis. An inevitability in the medical profession is a needle-stick injury. I stuck myself while drawing bloods from an HIV infected newborn and was on the new triple therapy regimen (for a month). The side-effects were so intolerable that in my mind, the risk of sero-converting (HIV replicating in my body) was sidelined by my desire to stop the treatment.
On the advice of an occupational health specialist I stopped the third drug. After a day the symptoms lifted. This 'third drug' is protocol treatment in one of the Paediatric HIV regimens. Apparently children's bodies adjust to the side-effects with time, but I struggle to accept that children have to cope with such miserable side effects, even for a period, especially when there are alternatives.
Newer antiretroviral drugs are constantly being developed. Some have fewer side-effects, some are more effective against emerging resistant HIV strains and some require taking fewer pills daily. Johnson and Johnson, the pharmaceutical company usually associated with caring mothers and gently cared for babies “holds patents on three key new HIV drugs desperately needed throughout the developing world,” and have “so far refused to license these patents to the Medicines Patent Pool,” reports Doctors Without Borders (MSF).
An MSF press release goes on to explain what the patent pool is: “The Pool has been set up to increase access to more affordable versions of HIV drugs, including fixed-dose combinations that include multiple medicines in one pill, and to develop much-needed paediatric HIV drugs. The Pool would license patents on HIV drugs to other manufacturers and the resulting competition would dramatically reduce prices, making them much more affordable in the developing world. However, since the Pool is voluntary it will only work if patent holders like Johnson & Johnson choose to participate.”
In South Africa, majority of our HIV infected children don’t have many people to advocate on their behalf. This is not the case with Multinational Pharmaceuticals. Information from the Centre for Public Integrity shows that Big Pharma (the term used to describe the world’s leading pharmaceutical companies) spent US$182 million on federal lobbying between January 2005 and 2006.
Dr Shereen Usdin, a public health specialist, in her book entitled ‘The no nonsense guide to world health’ explains: “Much of this influence plays out at the World Trade Organisation (WTO) negotiating table. The WTO’s Agreement on Trade-related Aspects of Intellectual Property Rights (TRIPS) has been one of the biggest obstacles to affordable medicines. Completed in 1994, it requires member countries to pass laws requiring patents for any product filed after 1995. Patents provide for Intellectual Property and are used to incentivise research and development. They prohibit a country from producing or importing generic drugs for at least 20 years. By preventing competition, drugs can be priced into the stratosphere.”
Although there are some flexibilities around TRIPS, those countries who wish to explore the flexibilities are often faced with risks of litigation, trade disputes and loss of aid, imposed on them by countries with vested interests in TRIPS.
Big Pharma could argue that the knowledge belongs to them, so they are privy to do as they chose. But is the knowledge really theirs? Dr Usdin points out that ‘substantial research and development for many drugs has been paid with public money through research institutes (such as the National Institutes of health in the US) and universities.
Economist Joseph Stiglitz in his book ‘Making Globalisation Work’ says that “the fight over intellectual property is a fight over values. TRIPS reflected the triumph of corporate interests in the United States and Europe over the broader interests of billions of people in the developing world. It was another instance in which more weight was given to profits than to other basic values - like the environment, or life itself.”
That morning by the bathtub, my husband put his arm around my shoulders and told me that everything was going to be alright. I believed him - I was young (enough), economically secure and I was taking these drugs as a prevention measure- for a month. I was not on lifelong life saving treatment and ‘voiceless’ in a time when appeals to altruism are met with no response.
What can you do?
Invite Johnson and Johnson to the Patent Pool Party: http://stopaidscampaign.org/poolparty.
- Dr Ayesha Jacub is a South African medical doctor currently living in Doha (MBBCH. Diploma in Child Health, College of Paediatricians South Africa).