I Moved to Atlanta Four Months Ago, and Getting Into HIV Care Was Hell
New chapters call for the turning of a page and the ending of a passage. After spending almost 21 years in Florida, I decided to relocate to Atlanta, Georgia, to retrieve my peach! At the end of January, I left my job as a prevention specialist and peer navigator at an HIV/AIDS service organization I'd dedicated three years of my life to.
Michael Lamb/Miss Mikey/Cousin Mike (however you may know me) hasn't always been too politically correct, but I found myself in the field of public health. Those three years allowed me to learn so much about myself, as well as a disease I am living with, HIV. Part of my decision to leave was that I wanted to pursue writing and poetry full time. Little did I know this transition, and the journey it took me on, would give me something to write about -- in hopes that others will realize why people fall through the cracks of our health care system.
Street smarts, white privilege, and my knowledge from working in the field would give one the expectation that my transition of care would be as smooth as a shaved bottom. But since moving to Atlanta, it has been a nightmare trying to find good care, and though I have come across a few gems, there are twice as many stones.
February: Bumps and Progress on My New Path to Care
I used to frequent Atlanta before my move, which allowed me to connect with folks who were already established there. I was welcomed quite warmly by all my friends, fellow artists, and colleagues. I asked people where to go for care and got similar answers: Nowhere was ideal. I got referred to AIDS Healthcare Foundation (AHF), but options were limited.
In February, I hit up my friend Daniel Driffin, co-founder of THRIVE SS, an HIV support and advocacy organization, to see about their linkage to care and safe space, the SPOT. He gave me their hours and told me to come through. Child, little did I know it was at the Rush Center, a location that houses office space and meeting and training rooms for Atlanta groups whose mission or activities advance LGBT rights and understanding. I rang the bell and got lost, thinking I was in the right place. Yet even though I was in the wrong office, I was treated like family. I felt seen.
Darie L.K. Wolfson, a systems administrator for the Rush Center, greeted me with a handshake and brought me to her office. Wolfson, a white cisgender queer woman, basically sat me down and drew a map on the process of getting insurance that even an infant could interpret. I gave her some of my knowledge and background in the field, and she was impressed. "OK, so you know how this goes, and that these people play games." I'm glad she was aware -- her passion seeped through her pores.
Prior to walking into her office, I had gotten a call from my old doctor's office in Florida saying my insurance had denied a refill on my 90-day supply of meds. But I walked out of that first meeting with Wolfson having already scheduled a follow-up appointment to fill out an insurance application -- and to meet with an AHF benefits coordinator, so I could begin seeing a doctor and a case manager and getting my insurance premium paid for. That meeting ended with a hug -- but I still haven't met the case manager to this day.
Between appointments, I wanted to get tested for other sexually transmitted infections -- because, as I said, Atlanta gave me quite the warm welcome. Wolfson referred me to Positive Impact Health Centers. When I arrived there, I felt like the man who tested me treated me like a science fair project. I didn't feel comfortable at all.
"I mean, we can do the test, but I don't see why you want to be tested if you're going to see your doctor soon. But we can do it since you're here," he said. I cussed him out and snatched my ID. I felt as if I had to do that, because if he made me feel like trash, there's no telling who else he made feel like that and they didn't say anything. Instead, they "fell through the cracks." After I tried to make a formal complaint with the manager, I didn't end up getting tested anywhere.
Back to establishing my long-term care in Atlanta: I emailed in advance with the AHF benefits coordinator and brought everything she asked -- lease, income, bills, etc. -- and more! After processing everything that we needed for ADAP (AIDS Drug Assistance Program), Ryan White CARE Act support, and Georgia's Health Insurance Continuation Program (HICP), she gave me a few leads on job openings within the field. I was thankful for her resources. We did everything on our end, and that meeting closed with a hug as well.
The next day, it was time to see Wolfson again, to do the insurance application. She led me through it, and together we decided on a plan. Now, all we needed was for a payment to be submitted.
A week later, I had another appointment to finalize the paperwork. I had crossed my t's and dotted my i's. I was under the impression that AHF had an assistance program that would pay for my premium, and then AHF would pick up my monthly statements. Both Wolfson and the benefits coordinator knew I wasn't working and had just started receiving food stamps, on top of losing my previous coverage. I was depending on this not only so I could take care of my HIV, but so I could get my psych meds and continue therapy.
Later that day, I met with my new doctor for the first time. He was an older white man who's been in practice since the early years of the epidemic. He saw people die and, because of that, he believed that since drugs are available, they should be taken -- as if people aren't dying nowadays because they can't get access to care. His face screwed up when he realized that I didn't have any type of insurance, but he got me an emergency refill.
March: Settling in, and Feeling Unsettled
March consisted of traveling back and forth to Florida. I had family to visit, as well as a few poetry performances. I had HIV meds and was still under the impression my insurance would be kicking in on the first of March. I hadn't heard any confirmation from AHF, yet I was receiving emails from my insurance plan asking for a payment or else I would lose coverage. I was worried, but I had faith, because everything was in place for me to have insurance.
I returned to Atlanta for good on March 13. No more traveling every couple of days. Finally, I was still. I had missed a follow-up appointment, but the front desk operator with the commercial-ready smile rescheduled me for two weeks later. From then until my next appointment, I never heard from the benefits coordinator.
This wasn't like her. My meds were getting low. I thought, "Come on now. Is this the crack in the system? Even with all my knowledge and resources and health literacy?" Imagine someone with none of that.
My insurance was cancelled. I found out on the day of my new appointment that my benefits coordinator was on a sudden leave of absence. My doctor was still shocked that I didn't have insurance. Yet again, an emergency two-week refill was given. My anxiety was through the roof. It was a struggle getting him to renew my psych meds. His empathy finally came through, and he gave me a 30-day supply.
For the next two weeks, I went between AHF, my insurance, and HICP trying to figure out where the ball had been dropped, not only with my private insurance but with my ADAP and Ryan White coverage. I had nothing, because a payment wasn't submitted, which had been promised to me. I cussed, complained, emailed, called, and even cried. Fellow advocates like THRIVE SS executive director Larry Scott-Walker, He Is Valuable executive director Richard Hutchinson, and Project RED Paint executive director Darriyhan Edmond gave me resources to make sure I had my ass covered and encouraged me to use email on my end as documentation that I did all I could as a client. They also gave me the reassurance that I was desperately yearning for.
My interaction with the pharmacy manager wasn't too good. He was abrasive -- short and to-the-point -- but knew his work. I got my 30-day supply of meds that Friday. But he also told me to take getting insurance off the table until they hired a new benefits coordinator, in addition to giving me the choice to pay my initial premium (remember, I was told that would be paid for me), while knowing full well I wasn't working. To him, my mental health was not a priority as long as I had my HIV meds. But, like I told him, I got more shit going on than HIV.
It's Nearly June. I'm Still Fighting.
All of that happened in a span of four months. I moved to Atlanta in February, and it's nearly June. All in all, I have no private insurance, so I am going without therapy and my psych meds. I have the bare minimum: Ryan White coverage, along with being enrolled in a patient assistance program to make sure my HIV meds are covered.
While I have been living in Atlanta for about five months now, February and March were the longest and most strenuous months of my life. Despite all my knowledge having worked in HIV organizations and my privilege, my journey transferring care has still been very trying. But I'm lucky. I have a car and a place to stay. Imagine if I were someone without knowledge or privilege. I'd be lost and forgotten about. I'd be another young "MSM" who died of HIV. People won't acknowledge that challenges to getting care have so much to do with why people are still dying.
The reality is, this one-size-fits-all treatment and care plan is trash. You cannot treat everyone the same based on one commonality -- having HIV. It won't work. Again, so many people fall through the cracks when the problems in care like those I've experienced are happening at such alarming rates.
A Centers for Disease Control's 2014 analysis shows just how many people fall through. About half of people living with HIV were not virally suppressed in that report. Only 45% of people with HIV in Georgia were virally suppressed the same year.
I'm saying something about it because other people go through this without the privilege and resources to be able to speak out. They may not feel safe enough. They may not get taken seriously. They may be labeled a problem client. Settling for substandard care shouldn't be an option. I should feel good when leaving my doctor's office. I shouldn't feel as if I am in an assembly line working with robots.
As much money that is dumped into huge HIV/AIDS service organizations, we as clients don't see any of that shit but the scraps they give us through HOPWA (Housing Opportunities for Persons With AIDS) and sometimes emergency funds. Even to get that, you've got to go through hell.
The Denver Principles may be old, but they set the tone for how people living with HIV must be treated. Remember, "We condemn attempts to label us as 'victims,' a term that implies defeat." Too many people have died in the fight, but they weren't defeated. They literally fought for their lives, till death.