I wrote an article today on a step towards a cure for HIV. It’s interesting in itself, and obviously if it goes the distance it is truly huge, but the thing that struck me the most was the people who offered their bodies for testing.
One of the problems with treating HIV is that the virus can bury itself in the DNA of inactive immune system cells. As long as the cells remain inactive the virus cannot replicate, so it can’t do any damage. However, it also remains hidden both from the rest of the immune system and from anti-HIV drugs. This is why it is possible to take a course of drugs that reduces viral load to undetectable levels but, generally speaking, not be cured. If one stops taking the drugs at some point some of the inactive, virus-carrying cells will be woken up by something, the virus will turn back on and you’re back to where you started.
In countries with decent health care systems this means people with HIV have to take drugs for their whole lives, which is no doubt less than fun. It’s also a cost to the health care system. In the developing world a short burst of drugs might be affordable, but years and years worth is not, one of the major reasons why so many people remain untreated.
Burnet Institute Professor Sharon Lewin is trying to find a way to turn the virus on in cells so that the drugs can kill it off. The idea is that a person might take several different drugs at once, waking up dormant viruses and killing them off in one blast. More expensive in the short term, but once it is done the patient would be cured, never needing HIV drugs again unless they become re-infected
Lewin had an idea that the drug vorinostat might be part of the answer here. Vorinostat acts as a control switch, turning genes on and Lewin thought it might do the same for the HIV virus. She tested it on 20 patients and demonstrated that it did indeed do this.
But here is the thing, well actually two things. Vorinostat was never going to cure these patients, even with their normal dose of retrovirals. Lewin was pretty sure more would be required, but was hoping to demonstrate this was part of the puzzle. In the meantime the patients had a (marginally) increased HIV load from the drug waking up the virus. Moreover, vorinostat is already in use for chemotherapy. They could do the test because it is already cleared as safe, but it sure ain’t pleasant. It kills the cells of the lining of the intestine and other places causing nausea, diarrhoea and lethagy.
So here you have a group of patients who already have HIV. They’re warned that taking this drug will give them the effects of chemo, may even have long term effects we don’t know about (because most people who take vorinostat normally don’t have great life expectancies so the long term effects are hard to study) and its going to up their viral load. Sure these things were temporary, but their chance of being made better, let alone cured, was pretty low.
Now I don’t know if the patients were paid, and if so how much, but I’m thinking that probably was not the main thing. These people probably realised that while they would receive no direct benefit from the test, if it proved successful a step would be taken towards a cure that would benefit millions. Someone had to get sicker for that to happen.
This isn’t unusual really. It’s not uncommon for people to take drugs that won’t benefit them as a step towards a cure, but there is something particularly poignant to me about the fact that these people already had a disease, and also knew for certain the drug would be unpleasant to take, rather than just knowing it was a risk. Moreover, it’s not as though the cure is just around the corner. They would have been aware that it is likely to be many years before they even might see a drug on the market and say “I was part of that”.
Yet they did it anyway. Respect.