"Today, I no longer need PrEP, but I remain very grateful for it."

by James LoDuca

[James is Vice President, Philanthropy & Public Affairs at San Francisco AIDS Foundation. This was originally published on Huffington Post. Check out SFAF's fantastic PrEPfacts.org - a wonderful resource on PrEP.]

PrEP may not be right for everyone, but everyone deserves the chance to choose.

James, left, pictured with Chris, one of his closest

friends who helped him through his divorce.

Two years ago, something unexpected happened. I was seven years into an incredible relationship. We married in 2008 during the brief window when it was legal for same-sex couples to wed in California, and my husband and I became poster boys for marriage equality (really -- our wedding picture was on a poster). We initiated the process of adopting a child. Never in my life had I been so happy.

Then, suddenly, my husband shared news that I hadn't seen coming: He wanted something different and would be filing for divorce. My world crumbled. The next six months were the most painful of my life. I couldn't sleep, lost my appetite, and went numb inside.

On the outside, I refused to show it. I started dating, went out to bars, and even made some decisions in the heat of the moment that I normally wouldn't. I was determined to convince the world (and myself) that I was fine. In retrospect, it was a fairly common response to intense emotional trauma.

My doctor wasn't fooled. He referred me to a therapist to start the hard work of healing. He also prescribed Truvada, a drug that protects against HIV infection. It's a groundbreaking HIV prevention strategy known as pre-exposure prophylaxis, or PrEP, which has been proven highly effective when taken correctly. PrEP is an especially good option for people during "seasons" of risk, or for anyone who struggles with perfect condom use 100 percent of the time.

AIDS Healthcare Foundation (AHF), the largest U.S. provider of HIV/AIDS services, is spending millions trying to position PrEP as controversial and deny access for people like me. Following a failed attempt to block FDA approval, its current tactic is to demonize the drug and shame its users. On social media, rhetoric from AHF's campaign against PrEP often crops up in posts on the topic. It's strikingly similar to the "controversy" that initially accompanied FDA approval of oral contraception for women. In the early days, single women who sought the pill to prevent pregnancy were labeled "whores."

When it comes to HIV, the idea that condomless sex with PrEP can also be protected sex is novel. As time passes, it will become less so. This isn't the first time AHF has fought progress by taking a position that ignores scientific evidence and sets it apart from the HIV/AIDS community. Some suggest the organization manufactures controversy to keep its name in the headlines and stay relevant.


Progress isn't possible when shame is present. It's time for a more humane and loving approach. We must come together to foster compassionate dialogue grounded in scientific evidence about all of the available options to protect ourselves and take care of each other. That is the only way we will end HIV transmission.

Research has repeatedly linked shame and stigma to the very behaviors that put people at risk in the first place. That was true in the case of my divorce, and as my healing progressed I overcame the shame and stigma that accompanied it. I got an STD during my personal season of risk, which was promptly identified and treated. PrEP doesn't protect against STDs, but it does increase opportunities to identify and treat them, because PrEP requires regular screening.

PrEP may not be right for everyone, but everyone deserves the chance to choose. Nobody should be allowed to take that away. We must work together to educate, empower, and support each other, and beat back dangerous attempts by any person or organization attempting to block access or shut down dialogues. Today, I no longer need PrEP, but I remain very grateful for it. Just like I'm grateful for all the friends and family who provided the unconditional love and support that I needed to help get back on my feet.

There's a sort of beauty in falling apart. When you put back the pieces, you get to build a better version of yourself. In my case, that version did not include HIV infection. I can't help but think that if AHF had its way, PrEP would have never been approved, and my story would be different.


 [EDITOR: If you have a personal PrEP experience you would like to share, send it to myprepexperience@gmail.com. Words or video.] 

[VIDEOS] Ken Almanza Captures the Early Days of His PrEP Experience

Day 4: My PrEP Journey: Truvada hasn't really given me any major trouble so far. My body seems to be tolerating it well.

I just incorporated it with my regular allergy pills I was already taking.

No big change. Stay tuned ...

Ken Almanza does HIV counseling in Los Angeles, and has recently begun taking Truvada as PrEP. He has been documenting his journey with short videos on his FB page - you can see the first three below.

Follow him if you want to  keep up on his PrEP experience. He also posts great info on PrEP as well.

And, he's charming. And guapo. So there's that.

Post by Ken Almanza.

Post by Ken Almanza.

Post by Ken Almanza.

Anon in Connecticut: "My fear before was being fed by all the misinformation on the internet."

Just got my first bottle of Truvada thru my insurance... I feel protected and liberated.

by Anon
Hamden, Connecticut

Just got my first bottle of Truvada thru my insurance. My copay was only $20.

I should have done this a long time ago. It took me 1 yr to decide to go to my specialist who removed all my fears about side effects. He wasn't concerned at all that there will be side effects since he has many patients taking it for several years.

My fear before was being fed by all the misinformation on the internet, unfounded half truths, and I was stupid enough to listen to those fears and in the meantime I know I could have become HIV+ while waiting and waiting to make that decision to start protecting myself...

Now I have this pill in my hand, I feel so relieved, I feel protected and liberated. Of course, I still plan to use condoms... but we have to be realistic...

When we fall in love.. we do get carried away... that's where this pill comes in for protection.


 [EDITOR: If you have a personal PrEP experience you would like to share, send it to myprepexperience@gmail.com. Words or video.]

 

Singapore Doc: "I remember the very first patient to whom I prescribed PrEP."

Many of my patients find it difficult to broach the topic of PrEP.

Most of them share  with me that they are worried about being judged.

I try to assuage this by making the  discussion factual, objective, scientific and professional.

by Dr. Tan Kok Kuan
Singapore

I am a doctor practicing in Singapore. We are an island state located in South East Asia known for its squeaky clean image, economic prowess and draconian anti-HIV  laws. Singapore’s official reported prevalence rate of HIV is 0.1%. However, based on  good evidence, many people including myself believe that the real figure is closer to  0.3%.

I wrote a blog article on PrEP in 2010 when evidence of its efficacy first started to become apparent. I was at first rather skeptical. Not of the effectiveness of the treatment but rather of its potential uptake. I was wondering how to approach this topic with my patients.

I was worried that if I brought up the topic of PrEP to my patients, they would misconstrue my intentions as accusing them of being promiscuous or suggesting that they are knowingly putting themselves at risk of HIV.

Fortunately my fears were unfounded. Many of my patients were very pleased to  learn more about PrEP and even if they were not ready to start on it, they at least were  appreciative of the knowledge of this option open to them.

I remember the very first patient to whom I prescribed PrEP.

He was a heterosexual male  in his 30’s and had a HIV +ve girlfriend living in another country. He would visit  her frequently and each time he went, he took PrEP. This went on for a while and  they eventually got married. Now, he is on PrEP daily. True love and Truvada does conquer all.

Since then, I have prescribed PrEP to many patients. Although I routinely warn them  of the potential side effects, I must say, to date, the worst side effect I have seen in my  patients is some mild nausea. I am not even sure if the nausea was psychosomatic.

A common concern brought up by my fellow medical professionals is that prescribing PrEP will make patients more promiscuous. I personally have not found that to be  the case. In fact, all of my patients have reported that their sexual practices before and after taking PrEP have not changed.

I also find that my patients who bother to take the time to have a conversation about PrEP with me are people who are aware and realistic about their sexual habits and have a sense of responsibility to their own health and that of the people close to them.  So it seems to me patients on PrEP are already self selected to be the type of patients who will not throw caution to the wind  and take unnecessary risks because they are on PrEP.

Many of my patients find it difficult to broach the topic of PrEP. Most of them share  with me that they are worried about being judged. I try to assuage this by making the  discussion factual, objective, scientific and professional.

By focusing on the facts, the science and the data, I find that patients will naturally start to feel more at ease. Instead of taking a authoritative role and dictating to patients whether they should be on PrEP or not, I prefer to take a consultative role. I would detail out the benefits  and risks of PrEP, allow them to clear whatever doubts they may have then make a  decision with them, not for them.

I read with great interest the many stories on this blog. It is heartening to know that  there is so much financial support for PrEP in the USA. Here in Singapore, Truvada  costs SGD$30 (about USD$23) per pill and it is all out of pocket expense. I also find it heartbreaking to hear of medical professionals who give patients a hard time with regards to PrEP.

From the current evidence, it looks like we are inching our way towards a cure  for HIV. I do hope we will be able to realise this in my lifetime. In the meantime, we must not forget that we are fighting  a war and HIV is the enemy.

We must use everything at our disposal to win this war. PrEP is a weapon, use it.

This is a summit about humanity -- a future free of HIV/AIDS should be made available to each man, woman, and child around the world.

--José M. Zuniga, PhD, MPH, President, International Association of Providers of AIDS Care (IAPAC)

Dr. Tan runs a medical clinic in Singapore focusing on HIV and STDs. He  also blogs on HIV, STDs and other Sexual Health topics. Check it out at:  www.drtanandpartners.com


[EDITOR: If you are a doctor who prescribes PrEP and  would like to share your experience and perspective, send us your story to myprepexperience@gmail.com. Words or video.]

 

Anon in WeHo - "Being on PrEP put the control in my hands."

I'll never know if being on PrEP prevented me from contracting HIV, but I'll always be grateful that I made the decision to start taking it.

by Anon, West Hollywood

Here is my PrEP experience.

I started taking Truvada about six months ago. I'm single for the first time in 13 years, and sexually active. I did a lot of research, through the internet, mostly through the "PrEP Facts" Facebook group. My general practitioner is also a specialist in the treatment and prevention of HIV, and was able to help me navigate through the information.

I've had virtually no side effects taking the drug. Some mild nausea, in the beginning. I've followed through with regular HIV testing, as well as kidney tests.

I've participated a great deal online in discussions involving PrEP, pushing back agains the "slut shamers" and conspiracy theorists who think its a bad idea.

I had no problems getting this covered by my insurance, and my out of pocket cost is nothing, because of the Gilead co-payment assistance program. I changed insurance providers in January (to United Healthcare), and had to order the drug through their specialty pharmacy. But this has been fairly easy, and it is always sent within 2 business days. It did require pre-authorization from my doctor and a little bit of red tape with the pharmacy to set this up.

About a month ago, I was on my first gay cruise. I went home with a couple who told me they were positive, but undetectable. We were all intoxicated. In the middle of it, I was being topped by one partner, when the other one looked down and told us both that he wasn't wearing a condom. We started with one, but it slipped off, and I didn't notice. We were having condom-less sex for about a minute. Maybe it wouldn't have happened if we were all sober. But this is an example of how things can happen (my first ever), and even a person who vows to use condoms 100% of the time could have an experience like this.

This gave me a level of anxiety the next morning, but I felt assured that everything would be OK because I decided to use PrEP. The couple both indicated that they were undetectable, but I never know who I can trust, or what to believe.

Being on PrEP put the control in my hands.

I waited the requisite three weeks and went in for a NAAT test, which came back negative.

I'll never know if being on PrEP prevented me from contracting HIV, but I'll always be grateful that I made the decision to start taking it.


 [EDITOR: If you have a personal PrEP experience you would like to share, send it to myprepexperience@gmail.com. Words or video.]

PrEP Facts Brochure for People and Providers

Since we know one of the biggest barriers for PrEP access is providers who are resistant to providing a prescription, our friends at San Francisco AIDS Foundation developed a patient-provider brochure to help overcome this potential barrier to both learn more about PrEP and use it as a tool to talk with your medical provider. Print it off, or save it on your phone.

It features details on how PrEP works, what taking PrEP entails, cost and insurance information, checklists, as well as PrEP-related billing codes that will help your provider figure out how to submit your services for payment from insurance companies and Medicaid.

Check out PrEPfacts.org for more great resources.

Here is a direct link to a very helpful virtual library of PrEP materials.

VIDEO: Truvada: The HIV Prevention Pill No One Is Talking About

Fantastic reporting from Fusion TV, featuring a beautiful couple, one of whom does porn on the weekends.

One of our favorite exchanges is towards the end when the reporter asks a random guy in a bar about Truvada as PrEP. He expresses concern that it would make him more promiscuous - "I do feel that if I took PrEP, I would be prone to be more promiscuous- I do." Mitchell counters with, "But you already are promiscuous, so why don't, why not protect yourself?" To which the guy responds - "That's a very good point."

Anon in Texas: "Had I known it was going to be so easy..."

Appointment day came, and I was nervous.

I fully expected to have to go in there and plead my case to the judge: "why do you want PrEP?"... "why do you think you're at risk for HIV?"... "why are you having so much sex?"... "why do you have so many sexual partners?"  

by anon

I live in Texas. One of the large cities, but it's still Texas. Definitely not a hotbed for gay acceptance or progressive anything.

When the FDA approved PrEP back in 2012, I paid attention, but was really surprised about not hearing much buzz about it. But I kept paying attention. After a while, I found out that some friends on the west coast were on it, and I kept paying attention.

Finally, after a good talk with them about risks, "should I, shouldn't I," etc., I decided to go for it. And boy was I nervous.

A few months prior, I mentioned the idea to my primary care physician. I've gone to her for years, and she's handled everything I've ever thrown at her wonderfully (when she first saw my PA, she asked me if it hurt). When I mentioned PrEP, I said I wasn't ready to do it yet, but wondered if she'd heard anything about it. She had not, but she looked into it, and said that she could refer me to an infectious disease doctor if and when I decided to go on it. Her rationale was that she doesn't have any experience prescribing Truvada (if any of her patients test positive, she gives them the same referral to the ID doctor).

So once I decided to do it, I emailed her and asked if she had since changed her mind about prescribing it (she hadn't), and again she offered to refer me to an Infectious Disease doctor. She specifically recommended one she knew personally, and spoke highly of her. Before I accepted the referral, I asked if my doctor could contact the other doctor and find out if she had any patients on PrEP. My doctor agreed, and called me a few hours later telling me that the ID does have a few patients on PrEP. So I scheduled an appointment. It would be in a little over a week.

Appointment day came, and I was nervous. I fully expected to have to go in there and plead my case to the judge: "why do you want PrEP?"... "why do you think you're at risk for HIV?"... "why are you having so much sex?"... "why do you have so many sexual partners?" These were the questions that I'd been repeating over and over to myself for the previous week.

And when the doctor finally came in the exam room and spoke to me, she didn't ask me any of them. No sexual practice questions... no slut shaming... nothing.

When she came in the room, she handed me a pamphlet about PrEP. I brought up some other health concerns (which could be exacerbated by a known, but low occurrence, side effect of the Truvada), and she wasn't worried about it at all.

She agreed to the prescription without any hesitation. "It's risk versus benefit" she said. "In high risk individuals, the benefits outweigh the risks."

We chatted a bit more (she said she was impressed with my knowledge of HIV and PrEP) and said once my blood work came back, she'd call my prescription in to the pharmacy. As I left, I thanked her, saying that the visit went so much easier than I imagined it could have.

Later that day I get an email indicating that my blood work is back, everything looks good, and that she sent my prescription. I would have actually had the medication that night, but for some reason, almost every time they send a prescription to my pharmacy, it gets "eaten" by the system. It took a couple more days for her to resend it, but as soon as she did, the pharmacy filled it. I have CIGNA insurance, and my copay for it was only $40, which was brought down to $0 with the Gilead copay assistance program.

My appointment was on a Thursday, and I picked up my Truvada on Monday (it would have been quicker if it wasn't for the weekend and the issue getting the prescription to the pharmacy). 

 Had I known it was going to be so easy, I would have gotten the prescription months ago.

 [EDITOR: If you have a personal PrEP experience you would like to share, send it to myprepexperience@gmail.com. Words or video.]

Leveraging ACA and PrEP for My Health

The Affordable Care Act is one new system I leveraged to my benefit (which has saved me over $5K to date as of March 29, 2014), and PrEP is a pretty new system I'm leveraging to my benefit as well.

I use PrEP as a fall-back plan, not as the only method of protection in my life.

by Kevin Plover

Minneapolis, MN

In 2009 through 2013, I was paying between $3K-$8K in out of pocket medical expenses. I had "amazing health insurance" through my employer, but I considered those kind of costs to be a major burden. Truvada cost ~$970 through my insurance - again, I considered that cost to be a major burden.

At the end of 2013, everyone on the news was complaining about ObamaCare, so I figured "I'm going to check this out for myself" so I hoped onto Healthcare.gov and selected my state.

I live in Minnesota, so we actually opted in to the Affordable Care Act (also known as ObamaCare for those that haven't watched the Jimmy Kimmel episode about the subject), so Healthcare.gov forwarded me to our state's marketplace exchange website MNSure.

The process was pretty easy - put in my birth date and zip code and answered a couple other questions, then I was whisked away to a list of tons of insurance plans. If I was going to enroll in an ObamaCare plan, it was going to be to save money (which I didn't think it could at the time), so I selected the platinum level plans.

A quick note: My deductible with my employer plan was ~$300. My maximum out of pocket with my employer plan was about $8K for 2014. Truvada for PrEP cost $970/mo through my employer plan - I'd be hitting that maximum out of pocket without any effort and it would be killing me financially.

So I saw a lot of high deductible plans on the MNSure website - like $3K deductibles before the insurance started paying anything... but the maximum out of pocket was also $3K, so once you hit your deductible, you paid nothing - my employer plan didn't do that - once I hit the $300 deductible with my employer plan, that's when I started paying $970/mo for Truvada for PrEP until I hit $8K.

I looked a bit more and found a plan that had $750 maximum out of pocket with a $750 deductible. And the premiums? $186/mo. My employer plan was $800/mo (I paid $200/mo, employer paid the rest).

It was one of those "this is too good to be true" moments - so I called up the insurance company and asked a lot of questions and gave them a lot of scenarios - it was true - they actually blew my employer plan out of the water.

I didn't "Qualify" for any subsidies or tax credits, because my income is too high, so I didn't register on the MNSure website - I registered on the insurance company's website - less paperwork, cutting out the middle man, etc. In January 2014 I got my prescription of Truvada for PrEP. It didn't cost me $970 like my employer plan would have - it cost me $550 because I had a $200 Gilead Copay Coupon from the GileadCopay.com website. And with that one prescription I met my maximum out of pocket for the entire year on my Affordable Care Act marketplace insurance plan.

I've gone to several doctor visits for various things, filled various prescriptions, and had other medical care since January - and it never gets old when the bill is .00.

PrEP is helping me achieve my health goals - one more layer of protection in my life - but it's also helped me towards my financial goals by reducing my medical costs dramatically thanks to the Affordable Care Act.

Sometimes you just have to leverage new systems to your benefit. The Affordable Care Act is one new system I leveraged to my benefit (which has saved me over $5K to date as of March 29, 2014), and PrEP is a pretty new system I'm leveraging to my benefit as well.

And I'm always asked, "Since you're on PrEP, does that mean you don't wear a condom anymore? Because you know PrEP only protects against HIV - it doesn't protect against all the other sexually transmitted infections"

And I respond "Yes, I am on PrEP which only protects against HIV. And my habits haven't changed - I don't have riskier sex because I'm on PrEP, and I use a condom with the same frequency I always have. Unless you can honestly say you use a condom 100% of the time, no exceptions, then you are at risk for HIV - and even condoms break. I use PrEP as a fall-back plan, not as the only method of protection in my life."

So that's my story - I wanted to add an extra layer of protection in my health maintenance plan, so I got on PrEP. I wanted to save myself money, so I leveraged PrEP to meet my out of pocket maximum on the insurance plan I leveraged through the Affordable Care Act.

No side effects, still testing negative for HIV as well as testing negative for those other sexually transmitted infections.

Still having .00 out of pocket for the rest of the year on all my medical care.

[EDITOR: If you have a personal PrEP experience you would like to share, send it to myprepexperience@gmail.com. Words or video.]