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 439 Jumping Through Hoops (New Revised Standard Version)

WOW it has been so long since I have posted here! More or less that is due to my situation remaining somewhat stagnant up until this point. In the world, lots of announcements have been made as to the efficacy of using PrEP and they all point to the fact that PrEP is a valuable tool for anyone to have in preventing the spread of HIV. This is why I am always happy to speak out on behalf of PrEP as a prevention method, and also why I am an advocate for those trying to gain access to these important medications. The latter being the reason for my posting today.

First, a brief recap of my experiences in obtaining TRUVADA for use as PrEP up to this point. 439 days ago I was able to obtain a prescription and was able to get it free with the help of Gilead's Medication Assistance Program which covers the full cost of the medication to individuals who do not have insurance to help alleviate the cost. I had a very bare bones "emergency" insurance policy. (see my earlier post "Day 11: Jumping Through Hoops" for more details) Six months into my taking PrEP, I found out I was no longer covered under the Medication Assistance Program, because my Insurance would actually cover 50% of the cost of the medication. That still left me with a $500 dollar monthly co pay. Even after investigating Giliad's co-pay assistance program (more details on that soon) I found the Truvada would still cost me more than I could afford monthly. I then became the beneficiary of some very generous charity on behalf of my doctors. But I really did not like having to rely on that and wanted to get back to standing on my own two feet as far as providing for myself. Pride, as well as fear of that opportunity not being available were the big contributing factors in my investigating a new insurance plan when the marketplace opened back up.

My new healthcare plan went into effect on March 1st, 2015 and I finally got a chance to look up the costs of the medications. With my plan, it turns out monthly the co-pay for TRUVADA was going to be only $110. That is where I went back to Gilead's co-pay assistance program, which can be found at www. GileadCoPay.com. Gilead's Co-Pay assistance program will cover up to $300 a month for TRUVADA. Great! I thought I was set. However, as with everything else in this experience, I found this was not as simple as I had hoped. Gilead's program is simple to use and easy to access, my insurance, on the other hand, was more of a challenge to deal with. 

United Health Care uses OptumRx for is prescription coverage. When I went online, I discovered that the only way to get Truvada covered with OptumRx was through their mail specialty pharmacy. When I called the specialty pharmacy, I learned they do not accept the co-pay assistance. I was so aggravated, the main reason I got this new insurance was to make sure I could afford PrEP. But then I talked to my partner, who I knew also had United as his healthcare. He told me that after talking to our local pharmacist, he found out he could opt out of the specialty pharmacy. So here's what to do if you find yourself in the same boat as me. There are a few ways to exercise your exemption right, online, by mail, or the easiest I found was making a phone call. 1-866-803-8570. Call up tell them you need to exercise your exemption right, they will ask you to choose one of two reasons you are opting out, privacy concerns, or timing and accuracy concerns with the delivery. After that, you will need to tell them an alternative in network pharmacy you would like to use. This pharmacy can be changed at any time, but you need to inform them of these changes. After opting out of the mail order, I was able to go to my local Walgreens, and use my co-pay assistance card. I am set, after once again jumping through a series of hoops.

Well, I think that's all I have for now. Thanks for reading, I know this update was long in coming! Please, as always, feel free to comment, or ask me any questions. Also share this with anyone or any groups of people who you think this would benefit. I hope you all are well, and I'll try not to wait so long until the next time we Talk about PrEP.

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 131: Of two Minds

Hey everyone, thanks once again for reading Let's Talk About PrEP. I'm really excited that since I have started writing this account of my experience on PrEP that there seems to be an increase in the number of people I have seen talking about PrEP and more importantly I have seen a lot more people who say they are talking to their doctors about PrEP. Word is getting out and people are realizing that Truvada as PrEP is a valid option in HIV prevention. Awesome!!!

This brings me to something I have been trying to decide how I feel about for a while. As PrEP gained some notoriety, something disturbing came along with it. The term Truvada Whore started to be used by many who were trying to degrade those who were taking PrEP. This stigmatizing term is a way of ignorant people slut shaming responsible people who were being proactive in their own protection. This seems no different than the recent comments I mentioned in my last blog about PrEP being a "Party drug." The Truvada Whore term was intended as a derogatory attack. Since then there has been a campaign to reclaim the derogatory term as many have done before. An HIV counselor in San Fransisco has even made t-shirts. Now many people feel this is a great way to take back the term. I, however, am on the fence about how I feel about this campaign. I definitely see the fun side of taking the term and freely using it as a way to rebel against the stigma. On the other hand, rather than embracing the term I would much rather see it be eliminated from our vocabulary all together. I feel that no mater the intentions of the shirts and advertizing this term, using "truvada whore" just seems to further the negative stigma surrounding the use of PrEP. Create a new term, start a campaign against the term, or just ignore it, the less attention paid to it the better in my mind.

Now please don't take this as an attack on any of you who have purchased this shirt, or supported this campaign which is absolutely going to a good cause, but rather view this as the other side of the dialogue. I will not be making the purchase, but I would love to hear what you all have to say about this topic. Are you a #truvadawhore supporter or do you feel as I do? I don't really think there is a wrong side to this debate, just two different approaches to the same problem, the stigma surrounding PrEP.