Thanks for your questions, which we are hearing a lot about since the PROUD study results.
Currently, the only people using PrEP on the NHS in the UK are the people who enrolled in the PROUD study. A doctor can prescribe an approved medicine privately if they believe it is medically appropriate for patient. However, the cost for these meds in a UK pharmacy is likely to be too expensive for most people to be able to afford.
Although the NHS is working through its process for deciding when and if the NHS will pay for PrEP, this is still likely to take some time. A lot of people are trying to have this decision soon, but it might not be until much later this year. However, based on the PROUD results, it looks like PrEP might easily be cost-effective for people who are at high risk.
Until the NHS makes this decision, the results from PROUD mean that lots of other people are in a similar situation to yourself. Some people are getting PrEP in other ways.
- Some people are using PrEP by getting NHS prescriptions for PEP. (PEP is where the NHS prescribes one month of HIV meds after a high risk exposure).
- Some doctors recommend patients buy generic drugs until the government decides whether PrEP will be available in the health system. This includes in Australia where these doctors ensure their patients have the appropriate HIV and safety monitoring.
- Importing generic tenofovir/FTC is also legal in the UK so long as you have a doctors prescription and it is for your personal use. This covers travelling yourself with meds or having them posted from an online supplier.
- We have heard of a case where an HIV positive person had his meds stolen, with the belief that they were going to be used (or sold) as PrEP.
- We have heard about PrEP being sold as a street drug in both London and Paris, though this is anecdotal. This is likely to relate to the way PrEP was used in the French IPERGAY study. Instead of daily dosing this involved taking two pills the day before sex, one pill on the day(s) you have sex, and a final pill the day after sex. There is only limited evidence to know whether this dosing strategy is effective.
Because some people might find other ways to use access PrEP, the information below highlights issues for anyone doing this.
Anyone using PrEP in these ways in the UK should do this with the knowledge of a doctor. This shows the urgency for the NHS to provide support for PrEP in sexual health clinics.
The following main points are:
- HIV status. PrEP should only be used if you know you are HIV negative. Everyone in PROUD had an HIV test before they could join the study. Ideally, you should have had no risks during the four weeks before starting PrEP. A few people in PrEP studies test negative when they start PrEP, but turned out to have been in early HIV infection. This was too recent to be picked up by the HIV test.If you take PrEP when you are HIV positive, especially in early infection, it is likely you will developed drug resistance. PROUD included routine HIV testing when on PrEP – every 3 to 6 months.
- Time to reach protective drug levels. Many medicines need to be taken for a few days in order to reach effective levels in the body. The two meds in current PrEP are tenofovir and FTC. In the PROUD study, people were advised to take daily PrEP for two weeks before assuming that drug levels were protective.
- Adherence. Lots of different studies have reported that PrEP is effective if you take it but not effective if you don’t. For gay men men, this requires taking a single pill of tenofovir/FTC on at least 4 days every week. Several research groups have suggested that women would need to take PrEP on 6-7 days every week to get the same protection. This is because drug levels are much higher in rectal tissue compared to vaginal tissue.
- Side effects and safety monitoring. Although the risk of side effects from PrEP are generally very low, safety monitoring is important. When HIV positive people use the same meds, it is important to check kidney function before starting PrEP and then routinely while taking PrEP.These concerns are just as important for PrEP.
- Support, advice and other STIs. The PROUD study included the chance to talk to health advisors and a doctor about sexual health and other things related to HIV risks. Many people in the study found that this interaction helped them feel more in control of any risks. Having a doctor or health advisor knowing that you are taking PrEP might be very important. In the UK, sexual health clinics often provide excellent services and support. Continuing to see your local clinic for support and to check for other STIs that PrEP doesn’t protect against is important.
- Legality and reliability. Buying any medicines online includes a risk that you might not be buying the same active drug. This involves trying to find a trusted online pharmacy and ensuring that the generic manufacturer is likely to be trusted. However, many online pharmacies – for example in Canada – are widely used by US citizens to buy more affordable prescription medicines.
Importing generic medicines for personal use is legal in the UK but needs to be clearly supported by a doctors prescriptions.
Advice from the UK medicines agency (MHRA) about importanting medicines for personal use is:
“to include a copy of the prescription and/or a letter from the patient’s doctor explaining why the product(s) are required, we also suggest that the package is clearly labelled on the outside stating the contents of the package and that the products are for personal use. We also strongly advise that the medicines are kept in their original packaging and that they are transported in accordance with storage conditions specified by the manufacturer (this not only helps identify the medicines, but also helps ensure the product’s stability).”
See these related questions:
For further information about the PROUD study, please see the following links:
Note: This question was updated on 10 July 2015 from an initial post from 11 June 2015, mainly to include new information about legality of importing generic medicines for personal use.
Information on this website is provided by treatment advocates and offered as a guide only. Decisions about your treatment should always be taken in consultation with your doctor.