(Note: PrEP – see part 1 -is an experimental HIV prevention strategy that, if proven effective, would reduce the chance of HIV infection in HIV negative people, provided individuals take a single drug, (or combination) daily. Also discussed are i-PrEP, or intermittent PrEP, where someone takes the medication intermittently, and topical PrEP, known as Caprisa, a gel microbicide also undergoing trials, used vaginally to avoid infection from HIV.)
The weather has been perfection here in Glion. The air is crisp and still and while the sun sweeps across the riveria from high above the mountains, the landscape splits and erupts with a forest that burns brightly with the reds, yellows and limes of autumn.
I’m writing this from the top of the mountains here, thinking about our discussions on PrEP over the last few days. It has been a fascinating discussion, if at times frustrating. I watched and listened as the divide between the sciences and the humanities fought to create to a bridge that would unite their ideas, only to, at times, be speaking in a different language, and exchanging ideas in alternate currencies. People want to see the drugs work, the HIV/AIDS world are immersed in prevention and treatment measures 24/7 and although some of the discourse seemed a world away from life on the street with HIV, a bridge was being built to bring thread the various strands of PrEP together.
The Missing Link
The big questions seemed to be around data – there just isn’t any yet. While the studies on animals have been promising, on humans – the data just isn’t in yet. The desire for everyone to try and find new and emerging solutions to the current HIV epidemic is clear – and it is behind the reason we are all here today. Looking at PrEP, i-PrEP, and Caprisa, -( a topical PrEP)– are the issues, and thoughts of how to manage the implentation of this when the data is out, is what the workshops here are based around.
Yet, from my perspective, I see all the people involved here at quite different stages of how to manage the next steps. There are still too many variables.
I can certainly see the importance of finding a drug that people in high risk
environments can take that will prevent them from becoming infected with HIV. Yet even if the results are good, asking people – even if they are in high risk environments – to take a strong drug, every day for 2, 3, 4 or more years – so they ‘probably’ won’t get HIV, seems a long shot, especcially knowing just how hard it can be just to start taking HIV meds, let alone taking them every day!
The Contraceptive Debate
It is true to say however, that people do take contraception. Women do take the pill, and they did and do understand that they have to take it EVERY day for it to be effective, just as the PrEP regime expects. So there was a discussion about looking into how the pill was introduced, and there will be a deeper look into this when the time comes for implementation. However, I heard of a Dr who had researched the contraceptive pill for decades, and has now given up on the idea of a daily pill – that monthly or more injections are the only way forward as being an acceptable offering for women today. And perhaps she is right. How many of us miss a pill? How many pregnancies have occurred because of it?
We don’t currently know the data on intermittant PrEP, (an HIV pill that you would take intermittantly), and they are looking at injectable options for this as well. This could be the way forward, although it order to get there, we may have to traverse some rather rocky road.
Where could PrEP be useful?
For me, and these are my thoughts, there seems to be the strongest case for PrEP in a few areas. It seems that currently, we need to match up a few areas for PrEP to be really useful. Combining factors like; 1) high risk environments 2) ability to adhere to drug regime (due to the need for further testing of PrEP and its ability to work), and 3) low ‘collateral damage’ – which basically means ensuring people won’t be abused or targeted, such as with hate crimes or violence for taking drugs which may be stigmatising.
If so, then perhaps the first is for women in high risk environments, such as parts of Africa and India where the rates of HIV are extremely high and, where the levels of sexual oppression of women is high. Where women may be unable to negotiate safer sex, yet may still have fairly stable routines around raising their families (their husbands may work away for weeks at a time and have sex outside the relationship). If novel ways are thought of to ensure PrEP reaches these women, (through health clinics, outreach etc) it could prevent HIV infection to women and then transmission to their infants if they became pregnant. NOTE: PrEP is not advocated at this stage for pregnant women, or adolesants.
It was unfortunate that I didn’t hear prisons mentioned, as I quietly thought this could be a good way to address the factors I mentioned beforehand. High risk environments (the rates of HCV and HIV in many prisons are truely awful), ability to adhere (you’d take them at the medication hatch as you would with any other medication), and low collateral damage. If, say, all prisoners were offered the opportunity to receive these meds, those exposed to IV drug use and sex could be protecting themselves effectively.
Of course, the 3rd group is serodiscordant couples – where one is HIV positive and the other is not. But perhaps PEP is of better use here? Taking the drug directly AFTER exposure – for the PEP limit of 4-6 weeks only. Now that’s fine as long as you know your partner is HIV positive. Some people don’t.
People Who Inject Drugs
Where does that leave people who inject drugs? Although to expect people who
are in very challenging, high risk environments already, to take a pill that needs routine – I know is difficult – but that certainly dosent mean they should be ruled out. In fact, in 2010, the 2nd PrEP trial to bring results will be a study of 2,400 Thai intravenous drug users – despite the fact that the there was some dispute about what the findings would be (so few were expected to sero convert – that studying PrEPs efficacy is expected to be hard.) It could be useful for our community, dispensed alongside methadone or syringes for example, but many of us may well prefer to have enough sterile syringes, or opiate replacement treatments first. Would some governments take monies away from these interventions to trial or introduce PrEP?
So where did that leave the discussions? I’ve just written a few thoughts of my own. To be honest, tracking the complex structures of scientists and researchers was difficult, and each time I felt I had something to say, something kept telling me to wait because there would be something else around the corner that would complicate things again! Often it did, other times someone would just say what I was thinking, so perhaps for the first time in a while, I was unusually quiet!
Drug resistance was not an issue apparently, and it has been overestimated. And, because overall, rates of new HIV infections are estimated to decrease with PrEP, so will drug resistant strains of HIV decrease. Thus it is unlikely new resistant strains will increase, but it is likely, in the smaller group of new infections, there will be slight increase in drug resistant strains. If that makes sense! A 0.2% increase over 10 years using PrEP, versus 0.9% increase without using PrEP (-of drug-resistant strains).
Trying to summerise the complexities here is very hard. But I’ll try…
Poorly run programes are often worse than no programmes at all. People are going to die if they dont get HIV treatments, but they COULD die if they don’t get PrEP. Countries like South Africa are broke – they already have to pick from a ‘shopping list’ that gives them the ‘best bang for their buck’ so recently that has seen them take on male circumcision as a prevention measure (it increases your protection from HIV). Other countries are in the same boat. Can we afford for them to take from the treatment budget the already scarce resources for HIV positive people – to spend on negative ones?
Four statements emerged that best summed up the approach to implementing PrEP, if it proves to be effective in the next few years. We will need to:
Know your target audience – Know your epidemic.
Know your environment. Manage expectations.
Stay tuned to the emerging research over the next few years. I expect that PrEP will be implemented – if the data emerges to prove its efficacy – but on a very small scale in very targeted environments, at least until we find an injectable or intermittant variety. The lack of data, costs and complications of PrEP is currently hindering its future. We will, as they say, have to wait and see.
The papers we were given to read state: Because PrEP is unlikely to be 100% effective, it would not replace other proven prevention strategies and would likely be most cost effective when used in combination with current HIV prevention methods including safer sex practices, use of male and female condoms, treatment of STIs, clean needles, circumcision etc. PrEP would not replace any of these strategies but it could be a powerful tool in the fight against AIDS.
Thanks to everyone who puts in their time and passion into treatments and prevention measures for HIV. Special thanks Afrah AlDoori for her coordination in getting us all there, and to Georgina Caswell, who was so utterly lovely and helpful, and Jorge Beloqui both brilliant and such marvelous dinner guests! I’m glad that INPUD was invited to take part in discussions about our futures, it seems we are turning a corner and I look forward to our involvement in the future. If PrEP is implemented, the drugs community will most certainly need to be there on the road ahead.