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.

Monday, March 30, 2015

"On Demand" PrEP for HIV Prevention? - Singapore's Dr. Tan Weighs In


[This is Dr. Tan's second contribution to the My PrEP Experience blog. Here is his first. ]

via Dr. Tan
Singapore


Over the years I have seen more and more patients come forward to enquire about PrEP for HIV prevention. It is very encouraging and heartening for a doctor to see this. This is evidence that there is more awareness and a greater willingness to protect oneself and whether intentionally or not, also protect public health and society at large.

Every person who goes on PrEP is one step closer to ending the HIV epidemic. At least that is the way I see it.

However, there is very little support for people living with HIV in Singapore and even less support for people who want to prevent themselves from getting HIV. Government or insurance aid for PrEP or PEP is unheard of. As a matter of fact, Truvada is not even officially indicated for HIV PrEP in Singapore.

So in this very challenging prescribing climate, one of the main barriers to patients taking PrEP is obviously the cost. Patients can be out of pocket $900 Singapore Dollars (US $660) for 30 tablets of Truvada! So unless you are zipping around in a Ferrari, which by the way costs north of 1 million Singapore dollars (US $733,000), it would be rather unlikely you can put aside almost a thousand dollars every month for PrEP.

So more and more patients I find are asking about and taking PrEP on an on demand basis rather than daily.

Let me first start by stating that this is NOT the way to take PrEP. The Clinical Practice Guideline published in 2014 on the use of Preexposure Prophylaxis For The Prevention Of HIV Infection In The United States clearly states “Do not use other than daily dosing (e.g., intermittent, episodic [pre/post sex only],”.

The same publication goes on to state “The time from initiation of daily oral doses of TDF/FTC to maximal protection against HIV infection is unknown.” And “data suggest that maximum intracellular concentrations of TFV-DP are reached in blood after approximately 20 days of daily oral dosing, in rectal tissue at approximately 7 days, and in cervicovaginal tissues at approximately 20 days.” Further suggesting that ad-hoc dosing theoretically does not provide the same level of protection or perhaps even no protection at all.

Be that as it may, we have to face up to the realities of real world medicine. The reality is on demand PrEP is a potential solution to the high costs of Truvada. Although early days, there are some studies coming out of Europe that seems to suggest that “on demand PrEP” works well in reducing the risk of contracting HIV. In fact, it was reported at the CROI 2015 conference that “on demand PrEP” reduced the risk of HIV infection 86% among gay men in the Ipergay study. (The Ipergay protocol involved taking 4 doses for a sexual act - 2 doses before, one dose 24 hours later, and one more dose 24 hours after that - see diagram above.)

My patients take Truvada 3 days prior to the exposure, everyday during the exposure followed by another 5 days after the last exposure. This is slightly more conservative compared to the Ipergay study that asked the patients to take 2 Truvada pills from 1 day to 2 hours prior to sex then another pill 24 hours later and a forth pill 48 hours later.

Although I have yet to publish any data on this, I am happy to say that none of my patients currently taking on demand PrEP have been diagnosed with a HIV infection (I’m knocking on every piece of wood available).

We certainly need more and larger scale studies to establish the efficacy and safety of on demand PrEP and also delineate an official dosing regime. But for now, it seems to be working for my patients and saving them a chuck of cash. So if you are faced with the same cost challenger, you might also want to talk to your Doctor about on demand PrEP.

Dr Tan is a Doctor practicing HIV/STD medicine in Singapore. He can be contacted at www.drtanandpartners.com

Tuesday, March 24, 2015

Chicago's CORE Center Gets Ready for PrEP - Clinic Opening Early April



Below is a post from our sibling Facebook page - Project Ready, Set, PrEP! (Project RSP!).

We are very excited to announce that the CORE Center in Chicago (2020 West Harrison Street, 312-572-4500) is launching a PrEP clinic in early April. Please click through to Facebook to check out for more pics from the training CORE staff participated in last week to get ready for PrEP.

Stay tuned for more clinic details on this blog, and on our Project RSP! Facebook page (so be sure to like us, if you haven't done so already.)

This is a very important advance in PrEP access in Chicago and will help many folks access PrEP and its associated services - please spread the word.


Monday, February 2, 2015

Michael - Out of pocket PrEP costs "well worth the added protection and peace of mind."

I wanted the extra layer of protection and the clinic was very supportive and cooperative about the process.


via Michael
Charlotte, North Carolina

I am a semi-retired 60 + gay male and part time CMT and CYT 200 Yoga Teacher and a first time PrEP Truvada user.

I am in a committed long term marriage to my husband of 17 years. He recently converted to HIV+ and after long and careful counseling with our agency here in the greater Charlotte area (actually Rock Hill, SC ) Catawba Care I became only their second patient to go on Truvada.

My husband takes Atripla every day and is undetectable but I wanted the extra layer of protection and the clinic was very supportive and cooperative about the process. I have Blue Cross Blue Shield thanks to the ACA and with the Gilead co-pay assistance program my out of pocket costs are approx. $130.00 a month --- well worth the added protection and peace of mind.

It has allowed my husband and I to return to a more secure sex life with the added protection Truvada brings. I have had NO negative health effects after 3 weeks and will continue to be regularly tested by our clinic.

I hope this brief information will help anyone considering going on a PrEP routine.

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.


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,


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