[AUDIO] Magnetic Love and Making Healthy Babies - Carolina's story

This interview was conducted in Spanish. The Spanish transcription follows the English translation below. Click here for the audio link (in Spanish) and have a listen.

Folks interested in more English/Spanish PrEP and PrEPception information are invited to visit the PRO Men page of the BAPAC website.


Dr. Pollock: Hi, my name is Dr. Lealah Pollock.  I am a family medicine physician in the Family Health Center at San Francisco General Hospital.  Today, September 10th, 2014 we are at BAPAC’s offices at the San Francisco General Hospital with Carolina and her baby to talk about her experience using PrEP as part of her comprehensive care. At the San Francisco General Hospital we offer PrEP as part of primary care, comprehensive sexual health care.  So, hello Carolina.  How are you?

Carolina:  Very well Dr. Pollock.

Dr. Pollock: So, to commence. How did you get in touch with the Family Health Center and with BAPAC?

Carolina: I was receiving care at the Castro Mission clinic and asked my physician that I wanted to have a baby.  They gave me information about BAPAC and the San Francisco General Hospital. That is how I came here to the hospital to request information.  Well, they call me to give me information about PrEP and referred me to the Blue Team (primary care clinic) at the San Francisco General Hospital and I met the staff that helped me, especially you Dr. Pollock, they gave me guidance and more information on how to get pregnant from an HIV positive person.

Dr. Pollock: Very well.  And when you told your doctor. Was it the first time that you and your husband asked about getting pregnant?

Carolina:  No.  I had already asked my doctor at the clinic I used to go to, but they always told me that getting pregnant was impossible. It was here where I found the right answer.  You helped me to have that answer.

Dr. Pollock: Had you looked for information before that?

Carolina:  Yes.  I looked for a lot of information and it was always impossible.  They told me that the only way to get pregnant was insemination and that they had to “clean” my husband’s semen.  But we did not want that.  We wanted to get pregnant in a natural way.  It was impossible.  Thanks God that I was given the information here and here you have the results. 

Dr. Pollock: Good! How did you decide to take PrEP? I remember the first time I met you; your husband’s viral load was still detectable.  He did not have an undetectable viral load, and we took some time to talk about PrEP as a possibility.  So. Why did you in the end decide to take PrEP

Carolina:  I decided to take PrEP because the physicians in this hospital helped my husband’s viral load to become undetectable, so I felt more comfortable.  Unfortunately, there are not many women that have the possibility to have all of the information about PrEP, but I feel that in this hospital you have the best physicians that provide the necessary information and that is why I made the decision and thanks God all worked out well. 

Dr. Pollock: And thank you, but you were the one that had the strength of asking for information and make the decision of taking PrEP, and having a baby.  And the baby is so beautiful…

Carolina: …healthy…

Dr. Pollock: Did you have any adverse events taking Truvada or PrEP?

Carolina:  No, I did not have any adverse event.  I think that women should use it as a method.  We never know, many people do not want to ask, and yes, you can get pregnant and it is safe.  I did not have anything and I am very happy and prepared to have another baby.

Dr. Pollock: Good, in the future.  How was the experience with your husband and in your world that knew you were taking PrEP?

Carolina:  Well, personally, my life is my life and I make my own decisions and nobody in my family except my husband’s mother, father and few brothers know that he has this disease.  It is unnecessary that all of your family know about it if you do not want to.  You can make your own decisions, who you share it with.  And here, you know that this information is confidential.

Dr. Pollock: True.  Did your husband support you to take PrEP?

Carolina:  Yes, he supported me since both of us wanted to have a baby.  We dreamed with having a baby…and there she is!

Dr. Pollock: Do you have any piece of advice for other women that are planning on taking PrEP or having a baby with an HIV positive partner?

Carolina:  Yes, as far as they have health providers that are knowledgeable about it and that can provide them with the necessary information.  My advice is that if you can make your own decisions and find a specialist like the ones I have here at the San Francisco General Hospital.

Dr. Pollock: Very well. Thank you to talk to us today and share your experience.

Carolina:  Thank you for giving me this information and thanks to the General Hospital because we got what we wanted and without your support it might have not been possible to have this baby that we have today, six months old with adequate weight and healthy.

Click to the next page to read this interview in Spanish. Click here to listen to it.

WNYC Radio Interview on PrEP - Featuring Dr. Robert Grant

"I think we need to find better ways to engage young people... HIV is a problem that can be solved, it's not just something you have to be afraid of, that you have to stay home, cowering from..."

via The Leonard Lopate Show on WNYC

It's been over a year since The FDA approved Truvada, a once a day medication that prevents HIV infection. But why are so few people taking it? Dr. Robert Grant, a professor at the University of California San Francisco, talks about the drug and why it’s slow to catch on. He’s the lead scientist who developed the treatment, which is known as “pre-exposure prophylaxis” or PrEP.

The New Revolution: Bob Grant Talks PrEP in Special Issue of Positively Aware

by Robert Grant, MD, MPH (via Positively Aware's recent "Let's Talk about PrEP" issue)  

"PrEP is a proven concept. A single tablet that contains two medications originally approved to treat HIV/AIDS, tenofovir and emtricitabine (brand name “Truvada” in the United States), was approved to prevent sexual transmission of HIV by the Food and Drug Administration (FDA) in July 2012. The Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) have issued guidelines for the use of PrEP. The medication is already available in generic form to people living in the poorest countries of the world."

 

Antiretroviral therapy has revolutionized care for people living with HIV/AIDS by prolonging life and restoring health, preventing transmission to uninfected partners, and preventing tuberculosis disease. These same medications can be taken by HIV-negative people with the goal of staying free of HIV. The combination of highly active antiretroviral interventions for both HIV prevention and treatment has led to unprecedented optimism about the prospect of ending AIDS.

The preventive use of anti-HIV medicines by HIV-negative people is called post-exposure prophylaxis (or PEP) if the medicines are started after sex or a needle stick that could lead to HIV transmission. Pre-exposure prophylaxis, or PrEP, is when medicines are used before and after possible exposures to HIV infection.

Read the rest here.

New Page - "Truvada Track" monitors insurance and Medicaid coverage of Truvada for PrEP

My PrEP Experience is pleased to launch a new informational resource called "Truvada Track - monitoring insurance and Medicaid coverage of Truvada for PrEP."

 

This page - accessible via tab at the top of this blog -  monitors insurance and Medicaid coverage of Truvada as PrEP . It will be updated frequently. The most current update is always at the top. If you have information about insurance of Medicaid coverage of Truvada for PrEP - including pre-authorization requirements or denials - please share this information with us by sending an email to myprepexperience@gmail.com.

Here is our first update.

July 1, 2013 update

 

 

Letter from United Healthcare regarding pre-authorization requirements for Truvada as PrEP.

Pre-authorization requirements for Truvada as PrEP from United Healthcare.

 

• United Healthcare (commercial insurance): Prior authorization required, consistent with indication on label, triggered when Truvada is prescribed without a third agent or in the absence of code for HIV infection (see pictures above)

• Aetna (commercial insurance): Prior authorization required, consistent with indication on label, triggered when Truvada is prescribed without a third agent or in the absence of code for HIV infection

• Florida Medicaid: Prior authorization required, consistent with indication on label, triggered when Truvada is prescribed without a third agent or in the absence of code for HIV infection

• New York Medicaid: Prior authorization requires documented HIV- test result; triggered when Truvada is prescribed without a third agent or in the absence of code for HIV infection

• Catamaran (pharmacy benefit management – select clients only): As of 6/25/13 – reports from health care providers of prior authorization impacting new starts on Truvada to confirm diagnosis (treatment vs. PrEP). Appears to allow PrEP use when consistent with label.

Notes:

• Up to July 1, we have not heard of denials of coverage. But pre-authorization requirements, many of which are just starting on July 1, could potentially lead to denial of coverage for Truvada as PrEP. 
• "Without a third agent" - Truvada is a combination of  2 drugs, and appropriate treatment for people living with HIV consists of 3 or more drugs. So, when Truvada is prescribed and a third "agent" is not, this signals that Truvada is being prescribed as PrEP.
• United Healthcare is the largest insurer in the U.S., and we understand that approximately 300 of their members (out of a total in the millions) are currently taking Truvada without a third agent. A very, very small percentage of HIV-negative people for whom they provide insurance.

Questions, concerns, or clarifications - send email to myprepexperience@gmail.com
 

Project Ready, Set, PrEP!'s Training Slides on PrEP for HIV Prevention

Chicago's Project Ready, Set, PrEP! (Project RSP!) has uploaded a fresh training on pre-exposure prophylaxis (PrEP) for HIV prevention. The training is designed for prevention workers, case managers, and others working in the HIV field and includes the key things you need to know about PrEP.

Check out the PowerPoint slides below, and feel free to download a copy. And please connect with us on Facebook. There are also a lot of helpful informational resources on the right-hand side of this blog just waiting to be clicked.

Project RSP! Training on PrEP for HIV Prevention 

 

VIDEO - HIV Positive Men: Having a Healthy Sex Life and a Healthy Family

This informative video, from our friends at the Bay Area Perinatal AIDS Center, talks about how HIV+ men, with HIV-negative female partners, can avoid HIV transmission - even if they want to have a baby.

The video includes info on the prevention benefits of treatment as well as PrEP. Click to watch.

Toronto Health Promoter Chooses PrEP

via Positive Lite (Canada)

Interview with Len Tooley, an HIV-negative gay guy who is taking pre-exposure prophylaxis. He works in Toronto as a gay men’s health promoter, HIV educator, tester and counsellor. In the first of three interviews about being on PrEP, he discusses his decision to go on it.

Excerpt:

I’m not perfect – even if I wish I was.  

And I have to admit, I haven’t had perfect condom use throughout my life. I’ve managed to stay HIV-negative for quite a while, but this was partly a combination of “responsible” condom use and – when “not-so-responsible” – luck.  

Those moments when I had done something that I knew might put me at higher risk often led to a lot of anxiety. Not constant, overwhelming anxiety, but one that prevented me from feeling good (meaning, guilt free and shameless) about the awesome sex that I had had. 

Read the whole thing on Positive Lite.

 

Trying to Get Pregnant and Thankful for PrEP

by an HIV-negative spouse

I've been married to my HIV+ husband for over ten years.

A few years ago we decided we wanted to try to get pregnant.

After years of researching and many disappointments, we decided to try to conceive naturally. Luckily, I had a doctor that was willing to work with us, who respected our choices, and wanted to do whatever she could to mitigate my risks.

She prescribed me Truvada. I began taking it for a month before my husband and I had unprotected sex, and after about two years of trying...we are still not pregnant, but I remain negative.

I realize our choices are risky, but there are not many realistic options for couples in our position who want to conceive. Sure, there are fertility treatments, we looked in to them all, not one fertility treatment option worked for us for one reason or another.

Taking the Truvada does not make me "reckless" in my decision to have unprotected sex, it makes me feel supported by a community of doctors and advocates, who recognize the nuances of my situation, and are doing all they can to help me stay negative.

I understand the risks I'm taking. I don't minimize them just because I'm using Truvada.

It is frustrating to hear experts say that prescribing Truvada to someone could give them an unrealistic sense of safety from becoming HIV+. I'm sure that's true for some...but judging from my own REAL (not hypothetical) experience, it makes me more aware of the risks I'm taking. I am reminded of those risks on a daily basis, every time I open that bottle and swallow that blue pill. I don't take them lightly. If I did, I wouldn't go through the trouble of using Truvada.

I've jumped a lot of hurdles to get to this place....through legislative changes, doctors with unbelievable and blatant prejudice, and all the disappointments that go with failing to conceive.

What has angered me the most, is watching and listening to doctors, politicians, and experts decide what my choices and risks should be.  For most of them, it is their job. But for me....it is my life.

Their opinions and decisions trickle down to impact my life in very real ways. From not being able to utilize certain fertility treatments because the Center for Disease Control won't establish guidelines, (even though I am legally entitled to those treatments), to walking past the baby apparel section at the store, to seeing that negative pregnancy test every month.

With all the complications and legal limitations of our situation, I am thankful for the opportunity to use Truvada. For now, it is my only option. And I think its a good one.

To read more about my journey, check out my blog (HIV negative spouses.)

The New Frontier

Prevention, PrEP, the whole damn thing — it all boils down to the human impulse to have sex without condoms. Thirty years into an epidemic, that’s still hard to talk about in public without hysteria and morality.

by anon, San Franciso
[name withheld for now]

I have been taking Truvada for two months. 

I’m 39, HIV-negative, and have been sexually active with men since I was 13 years old. So that’s 26 years of condoms, anxiety about HIV and navigating safety with several thousand partners. I’ve been a sex worker for 14 years and in my free time, a sexual enthusiast who loves bathhouses, online hookups and sex clubs. I’m versatile and attracted to a range of men. 

In other words, I’m a good candidate for PrEP.

I’ve remained HIV negative with a combination of fear, will power, good boy training, strategic partner selection and three rounds of post-exposure medication.

Over the years, I’ve realized that most of the prevention messages were wrong: that HIV is not orally transmitted, that HIV is much harder to get for tops, that by and large it’s a fragile virus. These are all things that HIV counselors and prevention campaigns lied to me and my community about by using fear, shaming and millions of dollars. In order to get an HIV test, I would have to go to the principal’s office and take a pop quiz about the five transmissible body fluids and get a finger wagging for the unprotected sex I’d had, which I grossly underestimated in our counseling session.

Fear, for most people, is a short-term deterrent. It’s like crack and it wears off.

HIV prevention, like most American entities, has failed to adopt tactics that are sustainable in the long term to keep people uninfected.

As I learned the truth about HIV (by becoming an HIV counselor myself and working with young street-based injectors) I started taking more risks myself. At a certain point, I felt like my risk tolerance had the potential to get me infected. So I spent a lot of time considering PrEP. I spoke to doctors, friends working at all levels of prevention and poz men on Truvada. I read up on it and finally decided to try it.

I offer these caveats because contrary to government and mental health industry perceptions, I am not suicidal and if there is a problem with my self-esteem, it’s that I have too much of it.

My doctor is a gay man in the Castro who has a lot of patients on PrEP. He treated me with respect, as if my personal research could be helpful to him.

The sex I’ve had in the last two months has been some of the most spiritual, connected and passionate sex I’ve ever had. The persistent anxiety I’ve lived with for so many years is gone.

I have not been using condoms as a top or bottom and have been playing mostly with undetectable HIV positive men. Ironically, undetectable men have emerged as the safest group of people for me to play with. HIV negative men, especially versatile ones, stand the chance of having newly seroconverted with high viral loads. So I’m thoughtful about it. I’m ruling out anyone who does crystal meth. Barebacking and online hookup websites, oft-demonized, are excellent for starting conversations about health and serostatus because people include status and sexual practices in their profile.

Some of you may want to scream BUT PEOPLE LIE! Sure. Sure they do. 

I Haven't Given Up, I've TAKEN CHARGE - One Man's Story of Taking HIV Meds for Prevention

by Nick Literski, Seattle

[This story was first published in May, 2011 - and became the inspiration for the "My PrEP Experience" series on the gay men's health blog called LifeLube, sharing the real stories of people who have chosen to use PrEP. This re-published post officially launches "My PrEP Experience" as it's very own blog today. Just this week on May 21, Nick and his partner were featured in an ABC news story about Truvada as PrEP titled "Truvada Helps Couple Cope With Reality of Love and HIV."]

Recently, I was surprised to learn that I had allegedly “given up on gay men.”

According to Michael Weinstein, president and founder of the so-called “AIDS Healthcare Foundation,” I now consider the lives of gay men, including myself, “disposable.” What great crime have I committed to deserve Mr. Weinstein’s condemnation? I take Truvada once a day, as pre-exposure prophylaxis (PrEP), in order to protect myself from HIV infection.

My partner and I have a mutually open relationship. In reaching that point, we did the responsible things that a new couple should do to protect themselves. We used condoms until we’d been together long enough to rely on HIV testing. We then chose to be fluid bonded, while always playing “safe” with other sexual partners. Every six months, we were both dutifully tested for the HIV virus, usually going to the local testing facility together. We were screened on a regular basis for other sexually transmitted infections. If we made a mistake with regard to our agreed precautions (and yes, I did so on at least one occasion) we were honest with each other.

About two years into our relationship, we were surprised to hear that my partner’s HIV test was “inconclusive,” and that the testing facility would be submitting it for further testing. A week later, we called back for the final report, and were relieved when an obviously hurried staffer told my partner he was “just fine.” We continued our very active sex life, which almost always involved me being the receptive partner in anal intercourse. During the next few months, however, my normally robust partner had an unusual number of illnesses, particularly skin infections. He became suspicious, and since we were nearly due for our six month testing anyway, he scheduled another test.

As I sat in the waiting area, I received a two word text from my partner: “I’m positive.”

To make matters worse, the staffer had pulled my partner’s chart, and found that his last “inconclusive” test had actually been positive. Due to the mistake of a careless (former) staffer, we had received an incorrect report.

As traumatizing as it was for my partner to find out that he was HIV positive, and as angry as he was about the earlier false report, he was truly terrified that he had exposed me to the virus innumerable times over the past several months. I was promptly tested, and we were relieved to learn that both my rapid testing and RNA results were negative.

Even so, my partner continued to experience tremendous anxiety over the possibility of infecting someone he loved. His worry extended to all sorts of seemingly-mundane possibilities, even to the point of not wanting me to share the same handle on our interchangeable-head electric toothbrush. While it’s normal for newly-seroconverted men to experience high levels of anxiety regarding sex, the impact on our intimate life was profound. My partner had experienced enough broken condom incidents over the years that his concerns weren’t alleviated by using them. At the same time, it was difficult for me to adapt to continuous condom use, due to both physical discomfort and my own emotional response to a physical barrier. Sex became much less frequent, and was burdened by worry and frustration.

In time, and with the help of an outstanding physician, my partner’s viral load became undetectable. In the meantime, both of us had educated ourselves on HIV. We knew that a Swiss study indicated that the risk of my being infected by my partner was now extremely low (due to his undetectable viral load), even to the point that some physicians in Switzerland believed protection was unnecessary.

My partner was able to relax more, and we began to settle into the “new normal” of being a serodiscordant couple.Even at this stage, however, there were emotional challenges.

I still hated using condoms, and I still wanted to feel my partner inside me.