I can only imagine, thinking you might have been exposed to HIV might be one of the scariest things of a person’s life. Am I infected? Will I get AIDS?
Even more traumatic, is contracting it because you were sexually assaulted.
David—not his real name— says he was at a bar one night late in 2009. He was hoping for a ride home. He ended up at another man’s house and they had sex. David says it was unwanted, that it was sexual assault.
“He doesn’t think he assaulted me. So, uhm. But, he was going to against my will.”
David went to the hospital for sexual assault evidence collection, the rape kit.
Later police investigated. It was one person’s word against the other. No charges were ever filed.
At the hospital, David felt traumatized. He was worried he’d been exposed to HIV. David had heard of a treatment called n-PEP that if used in time could stop HIV infection. He wanted it.
So-- let’s step away from this scene for a bit.
If a person is exposed to HIV through –say-- illicit drug use, or through sex with an infected partner, or sexual assault, there is a 28-day drug treatment called Non-Occupational Post Exposure Prophylaxis, or n-PEP. The treatment must start within 72 hours, the sooner the better.
The treatment amounts to the same drugs given to health care workers accidentally exposed to HIV on the job. But the procedures to determine if the treatment is appropriate are different.
David says the hospital staff did not understand the different recommendations as to whether the n-PEP should be used in his case.
A friend with David knew to call an HIV hotline at the Centers for Disease Control to get some help.
“I think it’s a 24/7 hour line or something like that—and so we ended up talking with the CDC doctor and he ended up talking to the ER doctor and they worked out a medication regimen that both were comfortable with."
David got the prescription.
He was lucky. People in Michigan exposed to HIV don’t always get that kind of help.
Emily Dievendorf is with Equality Michigan, an advocacy group for the Lesbian, Gay, Bi-Sexual and Transgender community.
“Depending on where you are, you might not be able to do anything.”
Dievendorf says between being strapped for cash and only recently getting procedural instructions from the Michigan Department of Community Health, many county health departments are not clear about n-PEP.
“A lot of county health departments are still working on getting that procedure in place and not as much thought has gone into how do we make sure all of the individuals in our communities that may have been exposed to HIV get the treatment that they need now that we know that it exists.”
There was a years-long delay in the Michigan Department of Community Health issuing those n-PEP procedures. The news service Michigan Messenger first brought up the issue. It found the CDC issued procedures in early 2005, but the Michigan Department of Community Health didn’t issue its procedures until April of this year. Leaving health care facilities with no state guidance for six years.
Lisa Randall is the manager of the agency’s HIV Prevention Program.
“Working in a large government bureaucracy, we don’t always, we’re not always able to do everything all of the time and it came out as quickly as we could possible get it out.”
So, now procedures are in place. But there is no state money for n-PEP. Randall says that doesn’t mean someone who needs the n-PEP treatment is completely out of luck.
“Most health facilities have compassionate care programs, the pharmaceutical companies that manufacture the drugs that are used in conjunction with post exposure profylaxis do have programs, pharmaceutical assitance programs, where those can be made available. And for cases of sexual assault, there is availability of support through the Crime Compensation Act.”
If you have insurance, n-PEP treatment might be covered. Some county health departments have set aside funds for low-income people.
But, Randall says her state agency cannot help those who might benefit from the n-PEP treatment to avoid HIV infection. Most of the agency’s money comes from federal funds that are restricted.
“Those funds cannot be used for anything other than medication purchases for individuals who are HIV positive."
LG: Well, it seems to me that spending a thousand dollars for prevention of HIV would be in the long term a lot cheaper for society than having to treat a poor person who contracts HIV.
“Yes, it’s a thousand dollars to purchase the medication, but there’s also the cost associated with the clinician’s time with the testing that’s involved prior to and subsequent to administration and then there are other challenges. It is not easy to take those drugs. They have side effects, substantial side effects.”
According to the CDC, among the side-effects is nausea so bad that some people won’t finish the treatment.
But even with testing, counseling and other support to get through the difficult drug regimen, the cost of n-PEP treatment is a tiny fraction of the cost of treating someone infected with HIV for life. A 2006 study from a Cornell/John Hopkins/Harvard/ Boston University research team found lifetime costs could run as high as $619-thousand.
Already Michigan spends $33-million a year –mostly federal money-- to pay for drugs for HIV infected people.
Emily Dievendorf with Equality Michigan says policy makers could do more to help pay for the n-PEP treatment. It could save the state money in the long run. But public officials have not made the effort.
“The state is not quick to pick up the tab for protecting its citizens after sexual assault and there’s some bias there, I think.”
She says there’s a stigma associated with HIV infection. She says public officials need to take some responsibility in terms of caring for the people who are exposed to the virus whether it’s a case of sexual assault or some other kind of exposure.
David, who believed he might have been exposed to HIV, successfully completed the n-PEP treatment and had a follow-up test. His insurance covered most of the cost.
“I was tested at six months. Negative. So, I’m very glad about that (laugh).”
David says dealing with the drugs’ side-effects and the cost were well worth avoiding the risk of HIV infection.
Because he insisted on the treatment, had a friend who knew to call the CDC, and because he had insurance to pay for the n-PEP treatment, his is a success story.
In Michigan, that’s not how it always goes.
