Your Experience is a Gift

For questions about PrEP in general, and for a Chicago/Illinois specific provider listing, visit

Tuesday, January 27, 2015

PAN Foundation Expands Eligibility Criteria for HIV Treatment and Prevention Fund for People who Need Pre- or Post-Exposure Prophylaxis

Read more about this program here.

This is an important source of support for insured people needing help paying for PEP or PrEP. Here is the basic criteria, followed by the weblink to apply for support>

Maximum Award Level - $4,000 per year.

Patients may apply for a second grant during their eligibility period subject to availability of funding.

Eligibility Criteria
  • Patient should be insured and insurance must cover the medication for which patient seeks assistance. 
  • The patient needs to be HIV positive, or be HIV-uninfected and at high risk of acquiring HIV, or be HIV-uninfected and have been exposed to bodily fluids potentially containing HIV within the last 72 hours. 
  • Patient must reside and receive treatment in the United States. 
  • Patient’s income must fall below 500% of the Federal Poverty Level

Click here to learn more, and apply for support.

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.

Brandon and Shane

Appeal Letter to Catamaran Prescription Benefit  
January 4, 2015
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. ( 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.


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