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Starting HIV Treatment and Corporate Greed: An Activist's Perspective

Part of the Series My First Pill

March 18, 2014

Marco Benjamin

Marco Benjamin

Last month, I decided to start my antiretroviral treatment when I tested positive for an STI [sexually transmitted infection] for the first time ever [-- not including HIV]. Embarrassingly enough, I was asked why I was having condomless sex if I know I have HIV. The physician failed to realize that maybe the condom broke (which it did). It is important to me to be at optimal health so that I can ensure that I do not transmit HIV to my partners. When I was first diagnosed, I literally begged doctor after doctor to start me on antiretroviral therapy and, surprisingly enough, no one would prescribe them to me. My CD4 count always maintained itself at 1,200 to 1,600 along with a minimal viral load without taking medications.

When I met with the physician to discuss starting HIV meds, he looked at me and asked, "What medication would you like to take? You are knowledgeable enough, which one would you like to start?" This threw me back because I didn't even know if I was currently resistant to any particular drugs. The physician urged that I take Stribild [elvitegravir/cobicistat/FTC/tenofovir], which is a one pill, once-a-day regimen. I did stop for a moment to think to myself how ironic it is that I participated with AIDS Healthcare Foundation's drug pricing campaign to lower the cost of Stribild, which today currently costs approximately $2,500 a month for 30 pills -- about $80 per pill per day. It initially took me about a week to start taking my meds because I could not come to terms that I too have been consumed into Gilead's pharmaceutical corporate GREED world.

My first week was very uncomfortable. I felt as if I imprisoned myself in my own brain. I worried at first about the side effects, which I did experience in the first week. Nauseated and even vomiting at times, but no one had explained to me about the side effect of the HIV system. The past seven years, I did not have to take a pill every day that acted as a daily reminder that there is a virus inside of me that will only lead to AIDS if I don't treat it properly. I found myself coping with my status once again as I did seven years ago. Fortunately, I have friends and family that have acted continually as my personal support system. I know as an advocate/activist for HIV/AIDS that I need to be in care; I need to be able to be healthy to continue to advocate for folks infected and affected by this epidemic. So if it means I need to grab a few glasses of water and take a pill to live another day, then I most certainly will. I owe this to myself and to those that I will continue to advocate for.

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Now, as my first bottle of Stribild is nearing its end, I need to get a refill. The problem is that I am still not approved for ADAP [AIDS Drug Assistance Program] according to the local pharmacist. The local pharmacist offered to provide me a refill if I were to pay $2,400. I was able to convince the pharmacist to provide me an additional week of meds being that I just started my treatment and want to adhere. I am in hopes that my ADAP will get approved so I may be able to eventually become undetectable.

This leaves me to ask myself: Are physicians connected with pharmaceutical greed? Why was I prescribed antiretroviral therapy without being officially approved to be on ADAP, in which I would be able to obtain free medications?

Why does my state ADAP need to pay so much for these medications? Why are consumer advocates fighting this fight alone and not in conjunction with the government who is paying for these skyrocketing drug prices? Does our government have no pricing negotiation power? If we were able to urge our government to demand lower prices, to even $3-$5 per pill, we would not have a current ADAP waiting list that I now believe I am currently on.

Marco Benjamin is an HIV activist and advocate living in New Jersey and was part of POZ Magazine's POZ 100 Unsung Heroes list for the year 2013.

What was your first pill? Whether it was AZT or Atripla, we want you to tell your story! Write out your story (between 200 and 1,000 words, please!) or film a YouTube video, and email it to mrodriguez@thebody.com. We'll be posting readers' My First Pill stories here in our Resource Center on Starting HIV Treatment.

Read other stories in this series.



This article was provided by TheBody.com.
 
See Also
More Personal Accounts Concerning HIV Treatment

Reader Comments:

Comment by: Daniel (Harar Ethiopia) Thu., Mar. 20, 2014 at 7:48 pm EDT
The first pill business is really very interesting. After being diagnosed the nurse prescribed me Nevaripine and efavrinez. The former formed an allergy which changed the entire soles of my feet and that oft hand. It was later on changed to Atripla. The other memorable time with the later Efavrinez is its hallucinogenic effect that adds up to the negative self realization of an AIDs patient. Of course that effect has vanished and we are now fiends with all the pills at hand.Thanks to God , we are breathing and have reached this time and who knows we might also be among the lucky ones to try the vaccines being tried on ... The current pills have some side effects like facial thining and color changes. Again thanks to the researchers, donors and Almighty these effects are much outweighed by the pros of the pills. Thanks for the chance of sharing ideas!
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Comment by: TC (NY, NY) Thu., Mar. 20, 2014 at 4:18 pm EDT
Are physicians connected with with big pharma greed? YES, YES. YES. For the past 2.5 years I have been taking HALF of the daily recommended dosages and my VL has remained undetectable and my CD4s are in normal range. I am only 5'6" 128 lbs, so this may be the reason I can get away with half dosage, but it seems like the dosage may be very much body weight correlated, something the doctors still don't want to admit. I did actually hear one doctor in an interview say that they are "looking into" patient response to lower dosages in India where the average body weight is 125 pounds.
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