[CASE STUDY] The Power of PrEP Advocacy, Achieving Individual and Macro Wins

[We hope this case study inspires us all to take action and demand the healthcare we need and deserve, whether it is access to PrEP or something else.]

Case Study: Getting Truvada as PrEP to those who need and desire it

As part of AIDS Foundation of Chicago's initiative to provide PrEP education and enhance PrEP awareness, it produces a website/blog called My PrEP Experience (right here!) The website provides a host of information and resources for health providers and potential users of PrEP, and catalogues stories submitted by users about their experiences using PrEP.

A university student sent an email to the My PrEP Experience moderators seeking support and advice.He had arrived for his check-up at the student health service center armed with the latest information about PrEP and its appropriate use. As a gay, sexually active man in an urban area with high rates of HIV, he assumed he wouldn’t have a problem getting a prescription because he knew that he was an appropriate candidate for PrEP. However, the primary care physician he saw was under the impression that she could not prescribe it – that the request had to be referred to the university’s infectious disease department.

The doctor told the student she would put a request to the infectious disease (ID) department for an appointment. Later she wrote him an email stating that the ID department will only prescribe PrEP to people in monogamous relationships with HIV-positive partners.

A savvy health customer, the student looked into his insurance coverage and found that it would indeed cover him for PrEP, but his plan restricted him to use his student health service center.

He was stuck....

So, what happens next? Read the rest of this case study for all the details. Spoiler alert - it has a happy ending, and is proof that individual and collective advocacy - community mobilization - gets results.

And please visit the newly revamped PrEPWatch run by AVAC, who, along with other allies across the country, collaborated with us on this specific effort. You will find an an excellent array of informational resources on PrEP, and is must-click.


 

[VIDEO] Honey LaBronx - "Girl, have you heard about PrEP?"

Mz. Honey LaBronx gives the children a PrEP talk.

 

NEW RESOURCE - Learn About PrEP Coverage on the Illinois Health Insurance Marketplace

Check out this fantastic new resource - "PrEP Coverage on the Illinois Health Insurance Marketplace" published by AIDS Foundation of Chicago - home to My PrEP Experience.

The document summarizes the monthly out of pocket cost a person can expect to pay for Truvada under each of the plans on the Illinois health insurance marketplace.

To learn more about the marketplace and health coverage, get started at www.GetCoveredIllinois.com.

Chicago doctor: "I don't always use condoms. And I don't always top. I will not give this up."

I have  a few young guys who need me, who engage me, and it feels so wonderful to be alive now.

via Chicago doctor

I am a 51 year old HIV negative gay infectious disease physician. 

When I began having sex at 19, I bottomed bare from the start with a few guys.  Then at 21 (in 1984), in one of my med school classes, the lecturer said that the development of an HIV test had allowed researchers to discover that for every one AIDS case in New York there were 100 infected.  I suddenly realized that there were more than 3 cases in Michigan, and that the bathroom stall at Mason Hall was not a good idea any more. 

So I tried to marry a guy, as I was kind of like that anyways.  That went 3 years.  Then I got dumped.  I tried Catholic celibacy for a year, then started going to bathhouses twice weekly to watch other guys fuck, but I was too frightened to do anything but oral. 

At work, I watched crop after crop of patients my age die.  Shocking horrible deaths.  Old college crushes one by one were memorialized, and then slowly forgotten   I went to therapists to try to control my behavior.  It worked well enough. 

I tried to marry a guy again at 30.  At 34, I found him crying in the bedroom, having just got his HIV diagnosis that day.  So, I learned we were not actually monogamous, and my escape-the-epidemic strategy had failed.  But it hadn't.  He had made me a top, and I was OK--negative despite the worst sore throat ever that week.  I helped get  him to an  undetectable viral load, took him to my best friend colleague, who put him on crixivan, zidovudine and lamivudine.  He is healthy, and with me, now for 21 years. 

Since I was 35, I have not used a condom when I fuck him, and he has never had a detectable viral load.   I let him come in my mouth, because I want that.  But we stopped having sex when I was 48.  I don't know why.  We love each other.  He is my mate in life.  He bakes me raisin bread, washes my clothes, lies beside me sleeping when I come back at midnight from hospital rounds. 

When I was 48, I saw the "monkey PrEP" data.  I began taking Truvada then, on my own. I took a half pill every day.  I did not tell my internist.  She refers patients to me, and is like a second mother.  I got labs for my cholesterol.  I took  leftover meds that had been returned, as there was always enough, because I take care of hundreds of HIV patients.

I discovered the internet at 49, and Grindr at 50.  I have more sex now than when I was 19.  I have  a few young guys who need me, who engage me, and it feels so wonderful to be alive now.  I don't always use condoms.  And I don't always top.  I will not give this up. 

Each of these relationships (ok some of them are, at best, encounters) makes me feel something-- vital.  I can't suppress these needs through work any more.  I am now officially on PrEP.  I am still negative.  I so hope the miracle of 2012 (when the FDA approved Truvada as PrEP) will save me, just like the miracle of 1996 saved the last few of my college friends.