[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. 

 

Unintended Side Effects Of PrEP

Damon L. Jacobs checks in with My PrEP Experience after 855 doses of Truvada as PrEP (more than 2 years.) Read earlier posts from Damon about his PrEP experience on this blog.

But what about the side effects?

Beginning the use of Truvada as PrEP on July 19, 2011 was not without some reservation.

Sure, I knew it could offer me an opportunity to feel more in control of my body and my health. Sure, I knew it could enable me to experience sexual intimacy without fear of HIV for the first time in my life. And sure, I knew it could enhance my ability to educate about safer sex practices as a therapist and an activist.

But what about the side effects? The prospect of having damaged kidneys did not thrill me in the least. Plus bone density reduction? I didn’t even know what that was! Nausea, diarrhea, abdominal cramping? Those were not the kind of adventures I welcomed. What about all the unintended side effects that nobody could predict? How was I going to deal with all that?

I was relieved to find during my first few weeks of taking Truvada that I experienced no physical side effects whatsoever. But what about the problems I wouldn’t be able to detect? What about the harm to my vital organs that I may not be able to sense? Was protection from HIV worth the risk?

For this reason, my doctor began the pattern of seeing me regularly, and drawing blood consistently. During the first year of using PrEP he saw me every three months. Beginning the second year he expanded it to every four months. By doing this he’s been able to monitor all my liver enzymes, kidney levels, and a bunch of other stuff that I don’t fully understand.

On November 20, 2013, I met with my doctor for my routine checkup. I had my blood drawn a few weeks earlier. As usual, this process was done with some trepidation on my part. Have I been damaging myself by using this medication? Am I willingly depositing toxic chemicals in my system? Am I sabotaging my organs for sexual pleasure?

After two years and four months (or 855 doses), my kidneys are fine. My organs are great. As a matter of fact, at age 42, I’m in the best shape of my life. How is that even possible?

As it turns out, taking PrEP has not only been a regular commitment to my physical health, but it has also prompted me to take active self-care measures in other areas.

Feeling protected from HIV helps me to feel more affirmative sexually. Feeling affirmative sexually gives me more confidence and energy. More confidence and energy leads me to exercise consistently and eat healthier. Exercising more and eating healthier gives me more strength and confidence. Having strength and confidence promotes improved mood, happier relationships, and more satisfaction in my professional life, which all positively impacts my physical health.

So have there been unintended side effects of taking Truvada the last two years and four months?

You bet!

It unintentionally has had an affirmative and healthy impact in every other area of my life. It unexpectedly has given me a sense of efficacy, empowerment, and freedom that has benefited my physical, emotional, and sexual well being.

If those are the side effects, I’ll be looking forward to a whole lot more!

----

Damon L. Jacobs is a Licensed Marriage Family Therapist in New York City, who specializes working with individuals and couples in the GLBT community. He has spent 17 years treating issues related to HIV/AIDS, stress management, bullying trauma, grief/loss, social alienation, suicide management, care-taking fatigue, substance abuse, domestic violence, and anxiety disorders. He created and monitors the "PrEP Facts: Rethinking HIV and Sex" page on Facebook. He is also the author of the new book "Rational Relating: The Smart Way To Stay Sane In The Crazy World Of Love." Please contact at Damon@DamonLJacobs.com. 

 

Pozilady - "Since knowing about PrEP, I have been able to help my son's father remain healthy"

by Pozilady
Washington, DC

I am in my mid 30's and have been diagnosed since I was 18. I've been undetectable for many years now. I've had quite a few relationships since my diagnosis. Some rejections as well due to my status, but my disclosure allowed me and those individuals to remain very close friends with an insurmountable amount of respect for one another.

Nevertheless,  the delight of my story is I have birthed a son who is over a year old now and HIV negative.  His father remains negative as well due to Truvada! (And prayer!!!)

Originally,  we used Truvada for him as post-exposure prophylaxis (PEP) due to a failed condom,  but as our relationship grew stronger we mutually decided to PLAN to have our miracle child. See, my "Inf. Disease" doctor would always encourage me to have a child, stating "you are healthy,  what are you waiting for?" So, my partner and I talked it over with my OB/Gyn doctor and asked his advise on what to do in case of a mishap and/or when trying to conceive.  They both led us to Truvada.

Since knowing about PrEP, I have been able to help my son's father remain healthy,  it's is absolutely wonderful for many reasons.  It decreases the burden of possible guilt should one become negative on a count of me. Also, if we decided not to stay together as a couple we both could move on with our lives, and not feel forced to stay together because of a status.

Disclosure is hard, but it is a MUST. Having knowledge of your status, regular doctors visits and labs, keeping up with your numbers, staying on your meds and finally educating your partner is empowering!

 

VIDEO: "Love somebody" - Dakota is back with a vid on his first PrEP day

[Read Dakota's blog from yesterday - Alabama firefighter, paramedic and "pitcher" goes on PrEP.]

In the video, Dakota talks about all kinds of stuff regarding this first day on PrEP. Including having a rather "invasive" checkup before hand - with swabs going in all kinds of orifices. He complains about awful PowerPoints used for patient education. (can we get an AMEN?)  And he talks about how he has always made decisions that were appropriate to him and his life - not paying heed to the judgments of others.

Thanks for sharing Dakota! We look forward to following your journey ;)