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 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 57 Checking in

Welcome back everyone. It's been a while since I've last posted so I thought I'd check in with you all. I'm doing great as far as my PrEP experience is going. There have been zero side effects to report and I just cannot express how much more at ease life seems to be without that ever present fear of infection hovering over my life. I have my first post-PrEP HIV test coming up here in a few weeks, but i feel it will be the least stressful test I have ever had.

I'm excited also to say that I am now a published writer. I have an essay about Let's Talk About PrEP in this month's A & U Magazine! You can check it out at aumag.com. It's a short little essay but it's great to continue to get the word out about PrEP. Word of mouth is going to be one of the biggest ways to get people informed about the opportunity that is available.

One last thing, I received a message from a friend of mine from college, Ellen, who wrote me, "Hi Phil! I've been loving your PrEP blogs and I was catching up on them today and wanted to pass on some info that some of your readers might appreciate. Having worked in a hospital/clinic setting as a social worker I've helped a number of families access the prescription assistance programs available through the various pharmaceutical companies and have run into issues at times based on where a patient is going for care. Not all clinics are willing to assist their patients in the prescription assistance programs because the medication is almost always sent to the clinic (as yours is). Not all clinics are willing to have the meds sent to them to distribute. This can be a big barrier for folks who are trying to use these programs." This once again makes me so grateful to have the great care that I am receiving. I really do encourage anyone looking into PrEP to do some research in finding out if your clinic is willing to work with you to get medicated.  If they are not willing to work with you, it might be time to make a switch. This is great feedback Ellen, thanks. 

Well that's all I really have for right now. As always, I welcome any feedback, questions, or comments. Is there anything you are curious about that I might be able to shed some light on? Is there information that you think other readers would be interested in hearing? Please let me know. I want this blog to be an open forum for everyone. Thanks again for reading!

Day 11: Jumping Through Hoops

Hey everyone, I hope your new year has started off well! I know mine has. (I mean aside from the frigged temperatures and the several inches of snow St. Louis is experiencing today). So far, aside from the hangover morning I blogged about earlier, I have experienced zero physical side effects while on PrEP. But I wanted to take this snow day and check in and also talk about my process getting my PrEP prescription.

I titled this post "Jumping Through Hoops" because that is what it felt like I was constantly doing in order to get my hands on the TRUVADA, but I also have some extenuating circumstances that made it a bit more of a challenge. To give you an idea of the time frame, I first spoke with my doctor about getting a PrEP prescription on November 22, 2013 and I finally received the meds on December 26th. Now several factors played a roll in how long it took, so I'll walk you through my experience step by step to explain. I'm sure most people have different, easier stories, but this might serve as a resource for some people who are in my same shoes.

When I spoke with the nurse about the reason for my visit at the beginning of my first appointment, I actually had to repeat that I wanted to talk to the doctor about getting put on PrEP. She later told me she had never heard the term used before and had to ask the doctor what that was. I'm sure this is not uncommon. Luckily I go to a doctor who is familiar with PrEP and who I feel comfortable talking to about such things. It definitely made this process much easier.

When I spoke to the doctor about the circumstances of my relationship and told her about why I felt PrEP was an appropriate course of action, she agreed that TRUVADA would be a good tool in preventing infection. I'll go into my reasons behind my decision in a later post, but I will cover them because I feel that is an important part of this journey as well. Now after we decided to go forward with the prescription the first thing I needed was an HIV test because before you can get a prescription for TRUVADA as PrEP your doctor has to provide a negative HIV test.

After this is where the process became more complicated. The biggest reason for all of the hoops is simple, insurance. As I mentioned in my first post, I am currently an unemployed theatre person, I have spent the past two and a half years as a full-time student. Health insurance has been a very minimal expense for me. I have it, but just bare-bones emergency coverage, (one of those plans that is being dropped because of the Affordable Care Act), until I get a job, or win the lottery, or I am forced to change policies, my insurance does not include prescription coverage.  TRUVADA is NOT a cheap prescription, however most plans will cover it. If you do not have prescription coverage there is another option. Gilead provides assistance for PrEP. This was the route I took. After discussing with the pharmacist my options, my doctor directed me to the webstie start.truvada.com. She said there was an agreement form I needed to print out and have us each sign. After some hunting I foundhttp://start.truvada.com/hcp/truvadaprep-resources which had many different forms including the agreement form. I printed it out signed it and delivered it to my doctor.

I assumed this would be the end of it, I could give that signed form and the prescription to the pharmacy and get the meds. WRONG, I then found out I had to call Gilead. 1-855-330-5479 is the number for the Medication Assistance Program. They ask for information about your health Insurance and your income to determine whether you qualify for assistance. They also require a form to be filed out by both you and your physician. That form can be found at http://start.truvada.com/Content/pdf/Medication_Assistance_Program.pdf. So I filled out that form and got it to my doctor, who filled out their part and faxed the form to Gilead. I waited about a week for the confirmation that I qualified for the program for the next six months.  Gilead then placed the order for my prescription with a pharmacy that would ship my medication directly to my doctor's office.

Now for most of you who have prescription coverage on you health insurance, most of these hoops won't be necessary. But if you do not have coverage, there are still options. I hope this was helpful information for some of you. Please let me know if you have any questions or comments about this or anything you would like me to cover in this blog. I love hearing from you all. Have a great day.