HIV Aids

More Obstacles to Getting Life-Saving HIV Medication Biktarvy

On June 9, I received 30 pills of Biktary, and the Georgia state AIDS Drug Assistance Program (ADAP) gave me 30 days to complete my enrollment. My scheduled sexually transmitted infections (STI) screening and ADAP enrollment appointments were soon approaching, and I had been quite steadfast with self-management. As a former HIV-focused case manager from the North who remembers systems, I can admit that I went into this follow-up visit ready to go. I moved to Atlanta in March, ran out of my HIV meds in May, and attempted to engage in care in June. I then attempted to enroll in ADAP for the remainder of the summer. So while the boys and girls were living their best Hot Summer moments, I was heated and infuriated.

The saga continues as I return to check in with the STI doctor and then the ADAP enrollment coordinator. Because I have taken the time to learn my “Before I Let Go” choreo, I am ready for the security, the registration station, and my exit. So once again, I go through the metal detectors, check in with the greeter, and register with patient services.

I’m not going to lie to you — a piece of me is kind of on edge because I’ve documented my re-engagement saga for the entire world wide web to read, and here I am, still engaging with an agency that seems to thrive on being #disserviceproviders. I catch a couple Pokémon while playing Pokémon GO in the lobby, and then the nurse calls my number.

As she walks me to the exam room, she asks me how I’m feeling today. She smiles, telling me to take a seat and that the doctor will be with me shortly. So I place my canteen upon the counter next to the chair and resume my Poké-exploration. About three caught Pokémon later, the doctor enters. I think I’ll call him “Dr. OhHellNah.” Before he takes his seat, before he says hello, he states ever-so matter of fact: “You need to move that” and points to my canteen sitting beside me. I move my water from one end of the table to the other. This does not please Dr. OhHellNah, but I am pleased with myself.

He requests that I place my water bottle on the floor. I chuckle and decline his request. Defeated and annoyed with me, he turns to his computer screen and asks me what brings me in the clinic. I give him a brief overview and share my relocation story. Never turning from the screen, he asks about my immunization records. He asks if I’ve had an updated hepatitis B vaccine, because I’m 30 now and apparently it’s that time in my life that I update this vaccination.

Bewildered as to why he’s inquiring about my medical records even though I’ve provided the extensive 100-plus pages of records I’ve accrued over the course of my seven-year HIV tenure, I take out my stack of papers and go through them, searching for the records of shots I’ve taken over the years. So I’m shuffling through my files, and Dr. OhHellNah is staring at me with this blank and disrespectful look on his face. So I find them, but I refuse to turn them over to him because I’m over him.

In one of my several trainings, I explain to folks that it only takes a moment to make a connection or sever it. To prevent myself from gouging out the eyes of Dr. OhHellNah, I decide to cancel him. He then instructs me to remove my clothes. No explanation, just instruction. I reluctantly place my pants around my ankles. The screening commences in awkward silence. He feels me up and down, in and out, never saying a word. My discomfort fills the room, and the only thing I want to do is leave — which is what I do.

Growth challenges me to be the best version of me — and sometimes the best I can do is remove myself from a situation that can put my character in jeopardy. I make the conscious choice to not see the enrollment coordinator this day, because I know I’d cuss the next #disserviceprovider out. I go home, email Lady Linkage to Care Coordinator and reschedule my ADAP enrollment to take place later in the week. Reminder, I can’t apply for ADAP online in the year 2019.

Three weeks later, my 30-day supply is gone. I travel the half-hour one-way commute back into the city to finally enroll in the ADAP program. I pass through security, the greeter, and reception. I wait, play some more Pokémon GO. The nurse calls my number and walks me to the exam room. She asks how I’m doing. She looks at me and smiles while we break the ice. I tell her about my experience with Dr. OhHellNah, and she apologizes on his behalf. She informs me that I am indeed in need of a new hep B vaccination, and I gladly oblige. We chit-chat throughout the entire process. I don’t even feel the shot. I chuckle as she shares that she will be returning with my infectious disease doctor.

The nurse returns with Dr. Nightingale and a two-week supply of Biktarvy (the Ryan White approved amount). Dr. Nightingale advises that I not miss these important and essential appointments in the future. She’s absolutely right! I shouldn’t have missed my original appointment, but I did. We exchange a few pleasantries and part ways.

The nurse calls the ADAP enrollment coordinator and escorts me to his work station. He introduces himself and explains what we’re about to do. I take a chance and inquire into why I cannot complete this application myself and why is it not available online. He has no answer for me. LOL. Ten minutes later, I’ve completed yet another enrollment application and been given my follow-up instructions.

Like clockwork, the enrollment coordinator calls me and gives me my ADAP number. I think to myself, That took long enough, and, I’m grateful to be able to articulate and self-advocate. I have a week and a half worth of Biktarvy left, with more on the way being delivered to my door, or so I think.

Here in the South, I apparently can follow up myself — but not enroll myself. It’s now mid-July and I am, once again, out of meds. I call ADAP and leave a message. Except, my need is slightly urgent now. I have to work — and I do not work in Georgia.

So here I am, traveling and educating America, sexless and without meds — again. Total transparency: I don’t even bother to waste my unlimited talk, text, and data package with contacting the agency while I’m out of town, because I need to focus on my work, and stress is not good on my CD4 count. I return to Atlanta on Aug. 21 without having my meds for a month and a half this time, but I’m enrolled somewhere. I follow up with the folks who’ve enrolled me, interviewed me, and side-eyed me, via email a few days after not hearing from ADAP. My email is answered on Sept. 5.

Regardless, I summon up all my intelligence, lived experience, and common sense to navigate just how on Earth am I going to get my meds. I call the pharmacy I’d like to utilize. They register me into their system, and I provide them the ADAP number I was provided with from the enrollment coordinator I saw six weeks prior. The pharmacy tells me that I provided an incorrect ADAP number and I should follow up with ADAP before I call them.

OK. Sure. No problem.

I call ADAP once again. After spending a few moments regurgitating my experience, I am assured assistance. Great! So I call the pharmacy back and complete the process, only to learn they do not have my prescription, only records of the meds I’ve picked up. The pharmacist advises that I call my agency and get the prescription sent to over to the pharmacy.

OK. Sure. No problem.

I call the agency and speak to a very pleasant woman who has no voice at all. Like, literally, no voice. I explain my situation and she tells me that she’ll send a message over to my doctor and everything will be resolved. The only thing I would need to do at this point is wait to hear from my pharmacy. Within a few hours, the pharmacy calls me to verify delivery for Sept. 5, 2019.

OK. Sure. No Problem.

My bottle arrives, and I’m kind of stuck. I reflect on my entire experience. I’ve heard the trend of HIV-positive folks who cut the pills in order to stretch them out. Do I want to resume antiretroviral therapy if I’m just going to fall out of care once it’s time to recertify in January? Do I want to go through the stigma of not being undetectable? Do I want this life?

I dust off those demons. I open my bottle and give thanks for another day.

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