Your Experience is a Gift

We feature real stories from people who have chosen to use PrEP as one way to protect themselves from HIV. If you have used or are using PrEP, we invite you to share your PrEP experience via audio, video, or in writing. Send video or audio links and/or text to myprepexperience@gmail.com and we will post them here. You can include your name, or you may contribute your story anonymously. This blog also contains helpful information on PrEP for users, potential users, and providers. Look for the links in the sidebar.

We have not heard of any insurance company or any Medicaid program outright denying coverage of Truvada as PrEP. Some companies and programs are requiring prior-authorization, however, which requires paperwork to be filled out. And the type of insurance coverage you have, including prescription drug benefits, will determine the cost to you as the consumer. To date, we have seen the biggest barrier to obtaining PrEP from providers who are unwilling to write a prescription.

If you have trouble getting a prescription for Truvada as PrEP from your provider, or getting a PrEP prescription covered by insurance or Medicaid, we are happy to troubleshoot with you. Send us an email to myprepexperience@gmail.com.

Friday, January 23, 2015

Gay Couple Don't Take "No" for an Answer and Successfully Appeal Insurance Denial for PrEP


[Moral of the Story - Don't Take "No" for an Answer]


by Brandon and Shane
Burlingame, California

My name is Brandon and my husband name is Shane. We are both negative and decided to go on Truvada as PrEP. 

We went to our primary care physician, he talked to us about taking it, side effects, the tests we’d need to take prior to taking Truvada. We did a HIV test as well as a full STD screening, after which he wrote us a prescription for Truvada. We went to the pharmacy (Walgreens) and were told that we would need to get a pre-authorization from our insurance company (Catamaran, our prescription benefit company). I called my primary care physician who filled out the paperwork and sent it back to the insurance company.

 After several weeks we heard back from our insurance company via a letter in the mail stating that we were denied "the Dr prescribing the Truvada must be an HIV specialist” (see below.) We appealed their decision, of course.



In deciding to start Truvada we had done a little bit of online research into taking the drug and we were prepared for the “pre-authorization” but were not prepared to be denied for lack of an “HIV specialist. We had previously used the My PrEP Experience blog as a resource, so we emailed them and Jim Pickett answered and offered us some quick advice including a link to the CDC Prep guideline document to help us with our appeal.

We took that information along with data we found from the FDA ("FDA approves first drug for reducing the risk of sexually acquired HIV infection") and the information pamphlet “PrEP Facts” from the San Francisco AIDS Foundation, as well as Catmaran’s own public list of “approved drugs” which Truvada was one.

The text of our appeal letter to our insurance company is below.

Approximately 2 weeks later we received a call from Catamaran informing us that we had been approved for an initial period of 12 months.


Cheers
Brandon and Shane


Appeal Letter to Catamaran Prescription Benefit  
January 4, 2015
Catamaran
Attn: Catamaran Appeals Department
P.O. Box 371544
Las Vegas, NV 89134 
Dear Catamaran Appeals Department 
I’m writing to lodge an official appeal to the denial of claim #: 0000, a prescription for Truvada Tab 200-300. 
I desire to take Truvada as a PrEP as I am currently an HIV negative actively sexual gay man, and I wish to stay that way. Obviously condoms should be used at every sexual encounter but as a human I make mistakes. PrEP would be there to help when I make that kind of mistake. 
According to the publicly available “2014 Catamaran National Formulary Reference Guide - List of covered drugs” Truvada is listed as a “PREFERRED Antiviral” with no additional proviso of “when it is prescribed by or in consultation with a HIV expert” as stated in the letter of denial. There is no current CDC, FDA, nor US Public Health Service requirement for Truvada as PrEP to be prescribed by an HIV expert, if this is a Catamaran specific policy, I urge you to please reconsider that policy. 
My PCP, Dr XXXX XXXXX, while not a HIV specialist, has been practicing medicine for 24 years. He is a highly respected and qualified Doctor. He has reviewed the recommended REMS program for Truvada as Prep as outlined by the FDA and Gilead with me. (http://www.truvadapreprems.com/#) and the recommended pre-screening HIV and STD tests have been completed with negative results. 
As I am HIV negative and do not have AIDS/HIV+, I am not currently under the care of an “HIV expert” nor should I be. They should be dedicating their resources to their patients that need them. As I’ve referenced below the CDC, the FDA, and the US Public Health Service all state that Truvada as PrEP should be taken by sexually active adults at increased risk to HIV exposure… which I am. 
The FDA approved the use of Truvada as PrEP in July 2012 and stated that “As part of PrEP, HIV-uninfected individuals who are at high risk will take Truvada daily to lower their chances of becoming infected with HIV should they be exposed to the virus.”
In the enclosed CDC document "PREEXPOSURE PROPHYLAXIS FOR THE PREVENTION OF HIV INFECTION IN THE UNITED STATES - 2014” the CDC states “On the basis of these trial results and the FDA approval, the U.S. Public Health Service recommends that clinicians evaluate their male and female patients who are sexually active or who are injecting illicit drugs and consider offering PrEP as one prevention option to those whose sexual or injection behaviors and epidemiologic context place them at substantial risk of acquiring HIV infection.” 
Please give me the opportunity decrease my risk of exposure to HIV, help me do my small part in stopping the spread of HIV/AIDS. Reconsider my desire, my Doctor’s desire, and the FDA and CDC’s recommendation that people like me take Truvada as PrEP and approve my request/Dr prescription for Truvada. 
Sincerely yours,


Tuesday, January 13, 2015

Matthew in Columbus - "The peace of mind is tremendous."

Now after a week I feel no different than before I started taking Truvada but the peace of mind is tremendous.


via  Matthew
Columbus, Ohio


I just began taking Truvada as PrEP about a week ago so I thought I would share my experiences.

I was visiting my doctor for an annual checkup and thought I would ask her then about a prescription for Truvada.

My biggest motivation was that I'm presently seeing someone who is HIV+ and responding very well to therapy, but the risk of transmission is always an issue during intimacy especially for him.

My secondary motivation is that when not in a relationship I have a pretty miserable track record of using condoms.

In preparation of talking to my doctor about Truvada PrEP I decided it would be wise to provide as much information as I could find in order to make our discussion more productive. My prescription insurance provider through my employer is Catamaran and I could find exactly nothing on their website regarding Truvada PrEP. After a lengthy session with Google I found a document that details Catamaran's coverage policy and a link to Gilead's Truvada PrEP website.

I printed out the Catamaran document and everything on the Gilead site, read over it all, and put together a packet for my doctor. This proved to be critically important. 

At first mention of a prescription for Truvada my doctor told me that Truvada wasn't something she could prescribe to me because I was, as of my last test, HIV negative. Surprisingly, she wasn't aware that Truvada was even authorized for PrEP, despite having many HIV+ patients and being very familiar with HIV treatment. This tells me that the medical community needs better education of Truvada PrEP so that they can better work with patients who could benefit from it.

I can only imagine that if my doctor, in a practice that specifically notes that they accept HIV patients in a large city with a huge gay population, wasn't aware of Truvada PrEP that awareness in the medical community at large is sorely lacking and high-risk patients are missing out.

After a long talk and a pause while my doctor read over the materials I brought along, she agreed to consider a prescription after being sure that Truvada was appropriate for me. After a couple of days she notified me that my HIV test, taken the day of my visit as a pre-requisite for Truvada PrEP, was negative and that she had sent the prescription to my pharmacy.

Of course, pre-authorization was required from Catamaran and that process took a few days. I am now approved for 12 months of Truvada PrEP with HIV blood tests every three months, along with a bone density scan and kidney/liver function tests as a result of rare, but serious, potential Truvada side effects. My particular prescription plan requires that I pay a $25 monthly co-pay, but I have signed up for Gilead's co-pay assistance program to cover even that nominal cost.

All in all it was pretty easy. The hardest part was gathering the information to share with my doctor and educating her.

I only experienced the very mildest of side effects - a tiny bit of dizziness - for the first two mornings after I took my pill.

Now after a week I feel no different than before I started taking Truvada but the peace of mind is tremendous.



Monday, December 1, 2014

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. 

 

Monday, November 24, 2014

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!

 

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