Day 504: What Role does Civil Discourse Play in Preventing HIV?

Hey everyone, thanks for taking some time and checking out Let's Talk About PrEP. When I write these new entries, it always amazes me when I look at my counter and see how many days I have been on PrEP. Today was specifically exciting when I saw I had been taking PrEP for over 500 days. That is quite the landmark, and I'm still doing great. No side effects, tests continuing to come back negative, and in great health. I continue to be grateful for the opportunity to be on PrEP.

504 days ago, in addition to making the decision to start on Truvada, I made the decision to document and share my experiences. This choice has led to people from all over the world reading about my journey, and hopefully getting the chance to start discussions with their partners, doctors, and friends about PrEP. These discussions are such a valuable tool in spreading awareness. However, I can't help but notice that sometimes, discussions when dealing with PrEP, or HIV in general tend to leave the realm of what some would consider "civil discourse." And hey, I get it, HIV and sexual health are very personal topics for everyone, so everyone is going to have their thoughts and opinions about the best way to approach all angles, from prevention, to laws, to care for those who are infected.

Discussion and debate are great ways to really dive into these issues, raise awareness that may have been absent, and create a sense of community. But the way in which we approach these conversations seems just as important to me. Everyone out there has the same end game in mind when it comes to HIV, ending it. This is a fact that I believe is often lost in these valuable discussions. The passion behind reaching that goal leads many to become so convinced that their way of thinking is correct, that they do not even listen to the other side of the debate. While well intentioned, that passion sometimes stands in the way of growth, and can even tear a community apart instead of building it up. So, you have people who throw out attacks, or call names, or even just sit on a stage sticking their fingers in their ears going "LA LA LA," instead of really participating in the discussion and figuring out how we as a community can reach the end goal together. Inevitably, this increases the stigma surrounding all of the aspects of HIV, and reduces the efficacy of any valuable message being presented.

I love the message and approach of Mr. Friendly. There are teams across the country that are dedicated to ending the stigma behind HIV and approaching every situation and conversation in a friendly way. These teams are not forcing their own opinions down anyone's throat, or trying to find ways to prove someone else wrong, but instead finding common ground and supporting everyone. This is the approach that will help everyone get to that end game TOGETHER.

I like to share my PrEP experience so anyone who reads this knows there is an option out there. I am not here to say that my approach to any of these topics is the only way, or even the best way for everyone; but I am here to say that the only way to get to the end of this race, is together, and the only way we can stay together is using civil discourse, and approaching everyone with the remembrance that we are all in the same fight together, and not from an attack or defense mode.

As always, I appreciate you taking the time out of your day to read this. I also appreciate you sharing this with anyone else you might think would be interested. I'd love to hear what you all think about this, Feel free to comment, ask questions, or just say hey.

Day 340: World AIDS Day

Hey all, I thought today of all days was an appropriate time for me to check in with everyone. Today is World AIDS Day, and I just wanted to take a minute and talk about what this day means to me. As a man who has taken the step to take PrEP, I feel this day is a terrific reminder about why I take my Truvada every day, and why I feel it is such an important tool in our arsenal to fight HIV/AIDS. So many lives have been lost to the epidemic, PrEP is a great step to ensure I will not become one of those numbers.

As a partner in a Serodiscordant Relationship, the reality of HIV is present to me in my everyday life. World AIDS day reminds us how far we have come due to Antiretroviral medications, but is also a reminder of how far we still have to go with no cure those living with HIV, are doing so everyday of their life.

The other way I think about World AIDS Day is as an artist. It amazes me how many performers, artists, and bright artistic minds were lost to AIDS. An entire generation of mentors, and inspiration to future generations wiped out. As an actor and director I mourn the progress in theatre and art as a whole that was stalled by AIDS. It was with this thought in mind that my partner decided to try something new for this years World AIDS Day. We wanted to create a visual spectacle on Art Hill in St. Louis, right in front of our art museum. He decided to go big and we were going to make an attempt at the world record for the most candles light in one place at one time. We had 13,000 candles and bags for the luminaries, we had almost 4000 pounds of sand to hold those bags down and we had an amazing crew of volunteers to help us spell out the word AIDS in candles. The letters were 100 feet tall and it was 200 feet across. When we showed up at 12:30 this morning, we got things started, and so did mother nature. For the next four hours, our crew battled freezing rain and sleet and temperatures of 20 degrees, but we got the letters outlined, only to find out that the weather was not going to let up, and we couldn't get the candles lit. It was a devastating blow, but in a way seemed somewhat appropriate. what better way to honor that lost art, than with an incomplete art installment. It seemed symbolic of the struggle that we face as humanity with this disease, we are making progress, but we've still got a long way to go. But with tools like PrEP, we can and will put an end to HIV/AIDS.

Thank you all for taking the time and reading this. As far as my life with PrEP is going, I am feeling great almost a year into this journey. As always I would love to hear from you all if you have comments or questions.

Day 286 I'm still here!

Wow, I can't believe it's been so long since my last post. And I left the narrative in such a negative place. My apologies for my absence. It's not that I haven't had anything to say, or that I have not been able to get to it, I guess sometimes you just need to take a step back, which is what I did. However I am back and am thrilled to tell you about the developments in my PrEP journey.

When last I wrote, I was so frustrated by my lack of ability to get PrEP or to get funding for PrEP. But Several months later and I am still taking Truvada without breaking my bank. This is how. I have an amazing team at my doctors office. They found a way to make sure I was still able to get Truvada through them, even if I couldn't pay for it. Several new developments have also arisen so I don't have to be a charity case for much longer. Gilead is raising income levels for their Assistance Program to 500% of FPL (or approx $58,350). So you may be able to get PrEP paid for if you are making below that amount and can't afford the drug. Also being told that the Co-Pay Assistance program is expanding from $200 to $300 per month. This is clearly good news expanding the pool of people eligible for assistance. (Thanks to Damon Jacobs for the information!) The other thing is the fact that open enrollment for health insurance is rolling around again. I now know what I need to look for and will be able to see if I can afford a plan that will cover Truvada without me even needing the assistance. So I am grateful for the help from my doctor. I know they are truly looking out for the well being of their patients. But I hate being the charity case that they have taken on, and am grateful for the options that are available to continue to take PrEP without looking for a handout.

Now, another issue came up about a month ago, that had an effect on my PrEP experience. I got a new job! The issue is that this job occurred several days at the time i had been used to taking my Truvada. Not a huge deal, but when I would get home from work it became a challenge to remember to take the medication. So I made the choice to switch when I took my pill. The change from morning to night seems like a simple decision, but it is one that has made my life easier. One of the biggest arguments people have against PrEP is the argument that compliance to a daily regimen is not practical for many people. It is our job as people taking PrEP to find a way to make taking a daily pill possible. It is the only way PrEP remains effective.

Ok, I think I have adequately caught everyone up on my life, and I will try to keep bloging on a more regular basis. Thanks for taking the time to read. Feel free to comment, ask questions, and share this with anyone who might find it interesting.

Day 186: Not the End, Just a Detour

Thank you all once again for following my PrEP experience with Let’s Talk About PrEP. Today is not a good day for me as far as it concerns my PrEP journey. But I wanted to share this whole thing with you all good and bad. Now let me start by saying that physically I am great. There have been absolutely zero side effects since I started taking Truvada as PrEP. However I just found out that I no longer qualify for the medication assistance program provided through Gilead. This is a MAJOR bump in my road.

I received a letter last week that said that my eligibility period for the PrEP medical assistance program had expired. I was confused because I had given the paper work to my doctor weeks before making sure he was able to fill them out and get them faxed in before my eligibility ran out. So I called Gilead this morning to figure out what was going on. I was informed that after checking with Anthem about my health insurance they found out I now have discounted medication coverage with my plan… news to me. Because of the discounted plan I no longer qualified for the assistance program.

So ok. I don’t qualify for assistance but now the medication is discounted so I should be good right? WRONG! Even with my insurance’s help, my copay for Truvada would end up being $524. Clearly this in not something I can afford. Or even come close to affording. Gilead does have a copay assistance program, however that would only cover $200 a month. This will not cover my lack of ability to pay. While I appreciate the effort, I can’t pay more than $300 a month for anything right now.

So it appears that for the time being I have hit a roadblock in my journey. I took my last pill last night and it doesn’t look like I am going to be able to get a refill anytime soon. This does not mean I have given up on PrEP. In fact as soon as I either find a new source of money, a new insurance plan, or a way around this, I plan to get that prescription filled and to start again. In reality I am lucky since my partner is undetectable, so I am really still in a low risk situation as far as transmission goes. But I am going to miss that extra layer of protection, as so is he. I hate that the tools are out there for my protection… I just can’t afford to get them.

I will continue to keep you all updated on my journey, and as always please feel free to comment on this or ask any questions I might be able to help you with. Thanks for joining me on this PrEP journey. This is not the end, I just have to take a detour.

Day 159: Renewal

Hey all, I hope this post finds everyone well. As I sit and write this there are several things I find weighing on me. Perhaps weighing on me is a bit too heavy of a term, but there are several things on my mind that I think this would be an appropriate forum to address them. First off, it seems to me that there seems to be a war waging all around about the use of Truvada as PrEP. However, I feel that the war is being waged in such a bizarre and unnecessary manner. It seems quite extraordinary to me that there is such a debate about the use of a medication that has potential to save and change lives. I don't think anyone speaking on behalf of PrEP is claiming Truvada as the perfect answer to HIV prevention, nor do I believe anyone out there is claiming that PrEP is the perfect choice for every single person who is HIV negative. There are a lot of factors that go into the decision and it is not one that can or should be made on a whim. Discussion with medical professionals is vital. But the point that all of us advocating for PrEP are trying to get at is, there are still new infections happening all over the world. We now have a new tool in the arsenal that can help prevent these new infections if it is used as intended. Even those who speak against PrEP acknowledge that fact. No, Truvada will not protect against other STIs. Yes, Truvada must be taken every day in order to be effective. But it still is an option to help in our effort to get to zero new HIV infections. I am just hard pressed to see the advantage behind trying to fight something that helps achieve that common goal. Financial interests seem to play in there somewhere. This is why I feel it continually important to share my experience and to raise the awareness in the world about PrEP, I cannot put a price on the peace of mind that being on Truvada has given me and I would not trade it for anything in the world. I want others to be aware of this option so they can see if it is right for them as well. Some people will decide PrEP is not for them, and that is absolutely fine as long as they continue to use other prevention alternatives. But I want it to be a choice that they can make for themselves, without the interference of outside voices telling them it is wrong to want to protect themselves in this manner. So I will continue to be a voice for the cause telling them to find the prevention method that works for them. Safe is safe regardless of the form it takes.

Ok, so off my soap box (at least for a moment). Another topic I wanted to touch on for just a moment was the fact I received an envelope from Gilead earlier this week. Inside I found the paperwork needed in order to renew my PrEP financial assistance. This actually made me smile. As you recall, I found myself jumping through many hoops in order to get everything in order the first go around with Gilead. It was a pleasant surprise that they are working with me, sending me paperwork that has already been mostly filled out in order to expedite my assistance renewal and to prevent the assistance from lapsing. Still a bit of work required to get the medication, but not as much as it could have been. So if any of you are out there in the same boat as I am, be aware that they are trying to help out, just stay on top of that paper work so you don't let that assistance run out.

I guess that's all I have right now. I appreciate all of you reading and as always, I welcome any feedback or questions you all might have. Also, as many of you have done before, please continue to share my journey with others as they try to make the decision about whether PrEP is for them. Thanks for your support of Let's Talk About PrEP!

Day 102: Party Drug?!?!?

HI everyone, it’s been a pretty busy week here for me, and I thought this as good of a time as any to check in with you all. As I write this, we are currently making our dissent into Atlanta, Georgia. Aaron and I were selected to be part of a photo shoot for the CDC in regards to compliance with HIV medications. While this is not directly addressing PrEP, adherence to medication is a vital part of my prevention life. Both my adherence to PrEP and my partner’s compliance with his Anti-retroviral regimen are important factors in my ability to remaining HIV negative. So I’m very excited to lend my voice and my face to this campaign. I also got a new job with a promotion company, which is very exciting and welcome news in my world.

Another important part of this past week was an event I went to that addressed Missouri’s HIV criminalization laws. It seems absurd to me that technically, in spite of any safety measures we might take, by his being with me, my partner is in Missouri a criminal for exposing me to HIV. These laws are clearly antiquated and really do need to be addressed. It’s not just Missouri that has laws like this criminalizing and basically forcing people with HIV into an abstinent life, there are more than half of the states in this country that have laws like that. DUMB.

Speaking of DUMB, I am brought to my final and perhaps most pressing topic of discussion. There was an article in today’s USA Today that talks about the debate that exists about PrEP. Now the fact that there is still a debate about whether PrEP is an effective tool in preventing new HIV infections is asinine in my opinion. Now the debate about whether PrEP is an effective prevention tool for EVERYONE, that seems to be more appropriate. No, I don’t think PrEP is right for everybody. But there was one comment in this article that really blew me away. Michael Weinstein, the head of AHF (AIDS Healthcare Foundation) made the comment “If something comes along that’s better than condoms, I’m all for it, but Truvada is not that. Let’s be honest: It’s a party drug.” So, there are SO MANY issues I take with this, especially as someone who takes Truvada as PrEP.

First of all, I have no idea what kinds of parties Mr. Weinstein is going to, but Truvada resembles nothing to any other party drugs I know about. In fact, it takes a few days for the Truvada to build up in your system. It’s not something you can just pop and go. In fact Truvada as PrEP helps promote a healthy lifestyle. It requires an HIV test every three months in order to obtain the prescription. But even more than attacking the drug, he just alienated anyone who takes Truvada and shames them for wanting to stay safe while having an intimate physical relationship. Yes, there are still risks related with unprotected sex, even while on PrEP, any other STDs are not prevented by PrEP and that is something to consider. HOWEVER, if condom only prevention were an effective tool, we wouldn’t still be getting new infections. But we are, and the people who are choosing to take Truvada are doing so because we want an extra layer of protection. We are not the ignorant party boys that Mr. Weinstein makes us out to be, but people who are taking their health into their own hands, if we are smart enough to assess the risk of HIV we are smart enough to asses the risk of other STDs as well, and if we determine there is a risk, I’m sure just as taking Truvada supplements our prevention regimen in the case of HIV, a condom will help supplement our protection regimen from those. But I think we deserve a little more credit.

That’s all I have for you right now. As always please share this with anyone who might appreciate it and any questions or comments are always welcome. Thanks for reading and have a GREAT day.