All I wanted was my meds.
I moved to Atlanta from Boston in March 2019. In May in Atlanta, I ran out of meds, became uninsured, and spent over a month trying to get an appointment. Realizing that I wasn't the only one experiencing obstacles to care, I chose to share my story with TheBody. This resulted in a lot of phone calls from agencies in Atlanta wanting to clear the air, friends and family checking in, and a teachable moment regarding online etiquette. The appointment I could finally lock in took place on June 7, 2019. I learned I wasn't the only one trying to counter barriers, so I wrote about it. It got published, resulting in a crazy week of agencies seeking redemption.
Except then I entered a new gauntlet.
At about 6:30 p.m. the night before, I was informed my 2:30 p.m. meeting the next day was cancelled. They wanted me to call to reschedule my visit for a later date. Fortunately, I hadn't put all my eggs in one basket, and I went ahead with an 11:30 a.m. appointment at a different agency. Let me walk you through that appointment:
I arrive to the public building and sign in at the front desk. The security guard seems unfazed by my arrival. Once I get off the elevator, I'm met with a metal detector and more security. I remove my belt and place my belongings on the conveyor belt for inspection. This guard is also unfazed by my presence, as I retrieve my stuff and walk into the open reception area and stand in line to await the greeter.
I explain to the greeter that I'm here to meet with the linkage-to-care coordinator in the hope of enrolling in Atlanta's Ryan White Part B program. At this point, I've been without medication for over a month. He makes a couple phone calls, then instructs me to take a number and wait for a representative from Patient Services to complete my registration. So I take my ticket, G306, and survey the waiting room for the most comfortable seat.
I settle for the furthest corner, take out my phone, and open Pokémon GO. I canvass and assess that the other six individuals scattered about this lobby are here for the same reason I am -- to survive. Here, there is no class, no airs. We're at the mercy of the county.
Approximately 20 minutes later, my number is called over the intercom, and I walk the six steps to my ticket counter to complete registration. Without looking up from his screen, the patient-services coordinator tells me that he needs to see my ID while I complete the registration form. It's basic enough, you know: name, address, the reason for my visit, etc. He asks if this is my first time at this agency, and I say yes. It's silent for the remainder of my registration.
Never taking his eyes off the screen, he slides me my ID and provides me a completed electronic version of the form I just manually completed. Confused, I inquire about the purpose of taking my ID. Bewildered by my audacity, he reluctantly states that it's the agency's policy and leaves it at that. He informs me that someone will be with me shortly.
Approximately 15 minutes later, my number is called. I am escorted by an employee to the back offices. I'm ushered through the door of someone's office, where she and a few other folks are engaged in lunch. I'm told that someone will be with me shortly and am re-routed to what I can assume to be a case-management office: two chairs, some pamphlets about HIV care, a small window -- no "How are you?" and no introductions. I have now encountered about six staff, and no one has given me their name. No one has introduced themselves to me. No one has inquired as to how I'm feeling today.
So I wait in the little interview/case-management room. Fifteen minutes later, the case worker enters, carrying a familiar stack of papers with her, and asks me to verify my name. She then asks what brings me in today. I know this song and dance all too well. For the next 10 minutes, I share my testimony -- making sure to hit all the points I know she'll have to ask anyways. I have my proof of income and my proof of residence.
The forms begin, and we answer the questions: one by one, page by page (so much for motivational interviewing, right?). After 30 minutes of intake and assessment and signature and checks for understanding, she confirms that she's going to make copies of my deliverables. One document she makes sure to emphasize is the law regarding my obligation to disclose my status. Bewildered, I ask for clarification:
"Persons living with HIV/AIDS must disclose their infection status to another person prior to engaging in sexual activity or sharing injection drug needles with that other person. Failure to disclose is a felony. O.C.G.A. § 16-5-60. It is irrelevant whether the other person is already HIV+, whether safe sex practices were used, or whether the risk of transmission is zero."
As she exits, I ask, "What's your name?" She answers, and I respond with, "Nice to meet you."
She returns with her superior. Two hours into my enrollment in the Ryan White program, I am now asked to explain what I wrote for TheBody. Apologetic realness performance with a twist follows next. I'm assured that the phone line has been fixed. Victory. Superior exits the room and I am given a copy of Georgia's HIV criminalization laws that I've signed and consented to. She returns with my original documents and pending appointments -- which include AIDS Drug Assistance Program (ADAP) enrollment.
I don't suppress my confusion. I inquire about this ADAP enrollment appointment that requires me meeting with another individual. I learn that that process is handled by someone else who is not the linkage-to-care coordinator -- and no, the application is not available online. It must be completed with an enrollment coordinator -- the sole enrollment coordinator.
I replay the hundreds of Ryan White assessments, HDAP applications, SNAP applications, dental insurance applications, rental assistance applications, disability applications, social security applications, and the like that I -- as one case manager -- completed with my clients in one session. I'm utterly floored to learn that two and a half hours into one enrollment session, I'm nowhere near linked to care.
I'm escorted out to the lobby, where I am asked to wait to register to see the infectious-diseases doctor. I take out my phone, re-open Pokémon GO, and wait to be re-registered. I'm given a new ticket number and advised to wait. Approximately eight caught Pokémon later, my number is called and I rinse, wash, repeat my registration forms. I give my new patient-services representative my ID upon request. I once again ask why I'm required to turn over identification every time I approach this station. With a smile on her face, she informs me that I'd be shocked how often folks will come into the agency under false pretenses and misrepresentations. I'm gagged and appreciative for her customer service. She appreciates my emerald locs. With a smile on her face, she tells me I'm all set and the doctor will be with me shortly.
Approximately four caught Pokémon later, a nurse calls my number and ushers me to the exam room. My basic vitals are taken, and I am given an appointment card to check in with the sexually transmitted infections (STI) doctor at a later date and told that the infectious-diseases doctor will be in shortly. My tenure in the HIV life has taught me to never leave the state without all of my medical records, so thankfully once my doctor (I'll call her Dr. Nightingale because I'm currently binging Good Witch on Netflix) enters the room, this check-in is quite expedient. Fortunately, I had my labs drawn in April during a quick work trip in Boston. Unfortunately, by the time everything is said and submitted, those labs are no good -- and now I must prepare for labs to be drawn.
So, four hours later, I leave fatigued, exhausted -- and I have a 30-day supply of Biktarvy and some appointments to get insured to cover the costs of the next few months of my medications, appointments to get my labs done, and appointments to follow up with the STI clinic.
I count myself blessed to be able to articulate my experience. I am humbled by my cross to understand how to navigate these delicate and complicated southern care systems. Though this saga chose to continue and I choose to partake in it -- I owe it to those who face what I face to see this story through. All I want is my meds.