Recently, an HIV service provider in New York City shared his experience after being exposed to HIV through sexual contact. He is well-informed about HIV and had received information about HIV post-exposure prophylaxis (PEP) at an ACRIA training. It was fortunate for him that he had attended this training, but many others aren't lucky enough to have this information.
PEP offers the possibility of preventing HIV transmission when exposure to HIV has already occurred, through either occupational or sexual exposure. Current guidelines recommend starting HIV medications within 36 hours of exposure and continuing them for 30 days. But more information needs to be available to those who are exposed to HIV through sex. If you ask people who are relatively well-informed about HIV what they would do if they were sexually exposed to the virus, chances are that not many will have a good grasp of PEP. This is where we rely on medical providers, even those who are not HIV specialists, to be informed of current PEP guidelines.
Many states follow the CDC's guidelines for PEP or have developed their own. These include consideration of side effects, adherence concerns, risks and benefits, cost of care, payment for medications, and public health impact. Even more important, these guidelines stress that a person who has been exposed to HIV should be able to walk into any emergency room and ask for PEP. If the person has had a significant exposure to HIV, such as unprotected anal or vaginal intercourse with someone with HIV or of unknown HIV status, PEP should be provided. PEP is not of course a substitute for proven HIV prevention methods like condoms, but in an emergency it is an important option.
When my friend walked into the ER of a hospital in the Bronx, he spoke with intake personnel who had no clue what PEP was. He was shocked. He was repeatedly asked for an explanation, until he was forced to share that he had been exposed to HIV, with other patients sitting nearby. He informed the intake staff that New York State guidelines specify that he receive treatment within 36 hours, and that he had been exposed 28 hours earlier. They promised he would be seen quickly.
Three hours later, he was finally able to see a doctor (now hour 31), was told that there weren't any HIV testers available, and that he would need to get tested in three months. He explained he was there for PEP and needed an immediate HIV PCR test, which would provide valuable information about the degree of his exposure. The doctor looked at him as if he was nuts, had some back-and-forth with another doctor, and finally offered PEP (now hour 32). He was given three days' worth of Viread and Combivir and a prescription for a month's supply. He was told he could take it then or wait until the morning. Fortunately, he knew enough to take it immediately, as he would have been past the suggested 36 hours by morning.
Unfortunately, when he filled the prescription, he got a surprise: he had to pay $1,880, since his private insurance would not cover drugs for PEP. He was able to afford that, but what would have happened if he couldn't? Medicaid and Medicare cover PEP, but many private insurance companies do not.
The next day, a doctor at the hospital called to tell him to come back for a PCR test. But when he returned to the ER, he found a different receptionist who asked him to explain what a PCR test was, why he was there, and the name of his doctor. Again he had to discuss his HIV exposure in front of other patients. When he finally saw a doctor, he was once again told he needed to wait three months to get tested. He informed him he was there for a PCR test and not an antibody test. Finally, the doctor he had spoken with earlier came to the ER and clarified everything.
The mix-up seemed to be solved ... until the hospital found that they didn't have a PCR sample tube in the ER. The doctor apologized and stated that he was unaware of PEP guidelines. My friend asked, "So am I the first person you've treated with PEP?" The doctor said, "No, we've treated others for occupational exposure" -- surprising, since he was unaware of the NYS PEP guidelines.
Fortunately, his PCR test came back negative and, due to his insistence, he had begun PEP in time. But what would have happened had he been less well informed? Would PEP and a PCR test have been offered?
It's important that ERs not only have written guidelines for PEP but that all service providers be familiar with them. Moreover, part of the process should be not only providing three doses of medications, but also giving patients the information about which pharmaceutical companies will pay for PEP. (GlaxoSmithKline will cover costs for uninsured patients only, whereas Gilead and Abbott will cover insured patients if income requirements are met.)
Local and state health departments need to create quality assurance processes to check whether PEP is being implemented in a sensitive and timely manner, from the moment a patient walks into the ER until he or she walks out with a three-day dose and a voucher for medications if needed. Perhaps health department investigators need to do surprise mock visits to hospitals posing as patients to see if the guidelines are being implemented.