Yaounde, Cameroon. Beatrice didn’t want us to take her picture. Neither did she want me to use her real name. Most of her friends and family don’t even know she’s HIV positive–the stigma here against people living with HIV is strong. Still, she was brave enough to tell her story to a room of journalists and health officials, including the chair of UNITAID, Philippe Douste-Blazy.
Beatrice is 30 years old and the proud mother of a 13-year-old and devastatingly cute 16-month-old baby. In 2002, Beatrice was diagnosed HIV positive. She quickly went on Anti-retroviral treatments, which for her meant taking two pills, once a day. Every month, she would travel to the local health center to pick up the medicines. She stuck with that routine for eight years. but after she delivered her second baby–who was healthy and HIV-negative — she decided to stop her treatment. As she tells it, she was feeling perfectly fine and didn’t see the need to keep up with her routine.
That turned out to be a very big mistake.
Two months after she quit her treatment she fell very ill. Skipping two months of ARV treatments raises the possibility that the virus may develop a resistance to the medicine. That is exactly what happened to Beatrice. Her doctor told her that if she wanted to live, she would need to go on so-called “second line” ARVs.
She was able to get on the second line drugs, and after one month began feeling better. But instead of taking two pills a day, she now has to take six. If she develops resistance to the second line, the results could be catastrophic. Third line drugs, while they do exist, are not available in Cameroon. If for some reason she misses a month or two of treatment, the virus could become effectively untreatable.
Beatrice is committed to her second line drug regimen, but circumstances outside her control could interrupt her treatments. In Cameroon, “stock outs” of drug supplies are an ever present threat. Beatrice lives with the stress that she may miss a treatment through no fault of her own. She fears what that might mean for her children.
Beatrice’s story is moving on a personal level. But as a public health challenge, her circumstance illustrates a huge gap in the way governments and donors have historically approached people living with HIV. The second line drugs that Beatrice takes daily is several orders of magnitude more expensive than traditional first line ARV treatments. The problem is, as more people access first line treatment there will be more opportunities for people to develop resistance to that first line. Donors and governments in the developing world simply can’t afford that kind of outlay.
It costs about $70 to $100 dollars per per patient per year for first line ARV treatment in the developing world, but $700 to $1,000 per patient per year for second line treatment. For resource poor countries the costs of expensive second line drugs is a huge barrier to providing care. Here in Cameroon, there are about 95,000 people on ARVs, about 5 % of whom are on second line treatment.
The government estimates that there is a further 150,000 people who could be on treatment, but are not because they do not know their HIV status. As the government and NGOs get better at reaching HIV positive people with treatment, the number of people who will require second and third line treatments may sharply increase. If you count on a first line treatment failure rate of about 5%, that means the sum the government and donors would have to set aside for second line treatment would be impossibly high.
One of the reasons the costs of second and third line treatments are so high is that the drug manufactures hold expensive patents on the drugs. On the one hand, this is reasonable enough: drug manufacturers invest a great deal into R&D and deserve a decent return on their investment. On the other hand, if costs don’t come down, a several thousand people living with HIV who require second line treatment will not be able to access it.
UNITAID’s brand new “patent pool” seeks to bridge the moral imperative to provide low cost drugs to patients and drug companies’ need to see a return on their investments. Drug companies who participate in the patent pool hand over their patents over to UNITAID, which makes those patents available to generic drug manufacturers. Part of the deal is that the generic drugs can only be sold in lower income countries, which helps to preserve the value of the patent. UNITAID then pays a modest royalty to the original patent holders. The fees that patent holder receives are smaller than what they would otherwise earn on the sale of their drugs in rich countries, but the patent pool opens markets for their drugs where it would otherwise not exist. The difference is between receiving a small royalty or simply being priced out of the market entirely.
The pool was officially launched last month when Gilead Sciences turned four HIV drug patents over to UNITAID. They need other major drug manufacturers like GlaxoSmithKline and Johnson and Johnson to get on board if it is going to really work.
This is a tall order, but it could mean the difference of several thousand lives that would otherwise be needlessly wasted.