For the past six years, Mark Hodar has run the sexual exposure PEP program for gay men at Howard Brown Health Center in Chicago, the Midwest's largest lesbian, gay, and bisexual health organization.
Hodar says that the number one misconception people come in with is that PEP is a one-time, morning-after pill. They're shocked to find out that it's a 28-day drug program. In fact, it's a six-month program altogether at Howard Brown, with follow-up lab work and counseling.
The second biggest misconception is that it's affordable. The price tag for the Howard Brown nPEP is $1,300, plus the cost of lab work. "It wakes them up to what someone living with HIV goes through," Hodar says. Some insurance companies pay for the treatment and some don't. Some people prefer not to go through their insurance company. Hodar points out that going through your insurance company might cause complications with obtaining life insurance later on.
The third misconception: It's easy. "They don't expect side effects," says Hodar.
Then there's the top vs. bottom theory of risk. "People want to know if being the insertive partner is less risky -- not necessarily," Hodar says. "We know people who've gotten infected as the top partner [known to be less risky]. It will forever be one of the alligators that we wrestle with in HIV -- what is the risk of this? What is the risk of that? People come in all the time with questions. They want to break it down to a science and there really is no science."
Hodar believes nPEP research is being hindered by "judgment around sexual exposure. Risk is considered 'optional,' an activity that people choose to engage in." He considers the nPEP program to be critically important. PEP has been proven for occupational exposure, why not sexual exposure?
When he travels around the country, he hears healthcare workers everywhere wonder if the availability of PEP will increase risk behavior in the community. Some research shows that it doesn't. More research needs to take place. Although Howard Brown runs its nPEP program as part of a research study, it doesn't advertise the treatment because it does not have the staff funding to handle a greater number of patients for the program. Even without announcements, patients come in from Wisconsin, Iowa and Ohio. Nor does the clinic want to take the chance that gay men might misconstrue the availability of nPEP for other than what it is -- it is not a license to take risks.
What's the biggest risk of PEP? People can become resistant to the drugs they take if they end up infected despite the drug treatment. So far, Hodar has not seen a single infection in people going through the program. He notes, however, that some of them may not have been exposed to HIV at the time.
PEP Diary No. 1 -- Steve
Tomorrow will be my last day on PEP. I feel I ought to do something to celebrate the end of a month of feeling dreadful, but of course, I won't. I still need to do an HIV test to see if the treatment has worked. Worrying about the test has overcome the decreasing side effects of the drugs I've been taking morning and evening for the last month.
I am a gay man in my mid-30s. I've always been safe, meaning that I've always used a condom for anal intercourse. In my case, I became at risk when I accidentally became exposed to my partner's blood during sex. Immediately I knew I was in trouble since my partner is HIV-positive.
We went to my nearest sexual health clinic to get the treatment. After less than an hour, I was given the HIV drugs I've been using since. I know I've been lucky since some friends of mine have had to wait for hours and have met some unhelpful staff.
I knew I had to expect nasty side effects but that first week on the drugs was a nightmare. Just imagine feeling nauseous all day long. It is not like feeling you are going to vomit -- it is more a feeling you would get after a nasty ride in a fun fair. Even if you just cannot get interested in eating, it seems that sometimes the effects are less nasty on a full stomach so I kept on eating all day.
The other side effects I got were quite nasty too. After an hour of taking the drugs, I started burping, which is pretty nasty when you already feel nauseous. I could also sense that my breath was quite chemical and I had this constant taste of iron. Diarrhea started on the second day and has been on and off since. I have been lucky since I've been off work for the whole month. I can imagine what it would be like in the tube [London subway] and suddenly have to run to a pub or be in a meeting and have to stop talking to go to the toilets.
Later in the treatment, the side effects decreased, but the one which has been pretty constant is the disgust when I have to swallow the pills. Another is fatigue. I've never been one to take naps or go to bed early (we are talking about 8 pm), but this has been my life pretty much everyday for the last month.
Editor's note: The PEP diary is taken from CHAPS on-line, a partnership of community-based organizations, co-ordinated by the Terrence Higgins Trust in London, carrying out HIV health promotion with gay men in England and Wales. Learn about their HIV prevention campaigns, including nPEP, at www.chapsonline.org.uk.