As in the life of many people living with HIV/AIDS, a few months ago, my physician placed me on a drug holiday as my body increased with resistance to the current regimen of HIV-medications. As my t-cells continued to plummet two months ago, it was time to begin a new regimen and all it entailed.
At the time, I was completely horrified and experienced a flashback to the morning in 1998 when I was curled up in a ball in agony and stomach cramps on my bathroom floor next to the toilet for 4 hours in my lower eastside New York City apartment. I recalled how violently and emotionally ill I became because of the toxic dose of horse-sized pills and the challenge to swallow just one of the 16 pills in a day. Six hours later, I called my doctor in tears to let him know I would be bringing back all the pills and we need to try something different that would not completely immobilize me and rob me of my dignity.
Back then, as I do now, I enjoy a healthy and supportive relationship with my physician who has stood by me time and time again in some of my life's darkest moments. It's a relationship where I can speak openly and candidly with my physician and be free from judgment. While I have dealt with many short lived moments of horror, I'm still alive despite multiple periods of time when I weighed 135 pounds, 70 pounds lighter than today.
During most of my struggle of living with HIV/AIDS, I've always had some form of private health coverage to rely on that would finance my road to a healthier life. Prior to my receiving Medicare benefits and utilizing some federal and state Ryan White-funded programs, I relied solely on private health coverage, and until health care reform, something sadly a growing number of Americans are denied and go without. When Medicare benefits kicked in and needed to access Ryan White funded services in New Jersey and Florida, I realized that most of the challenges that I experience are navigating a complex system of care with few safety nets. Everyone, especially people living with HIV/AIDS need to become more actively involved in their healthcare and the decision-making process for these programs impacting our daily lives.
Since moving to the Greater Fort Lauderdale Area, one of the greatest ongoing challenges I have had is the administration of my local health department's AIDS Drug Assistance Program (ADAP). I could give a litany of some of those challenges, but for this purpose of this column, I want to maintain a positive focus on an issue the health department has been trying very hard to improve.
Recently one of the greatest challenges people living with HIV/AIDS (PLWH/A) in my county were facing was simply accessing their medications from the local AIDS Drug Assistance Program. Once you were enrolled in the system you were, for the most part, set to go.
But over the past few years, ADAP clients, including myself, reported having difficulty in securing an appointment for ADAP eligibility and recertification. Individuals would call the telephone line to schedule appointments where often the voicemail box would be full, with no instructions or prompts for what to do next.
At one point a year ago, the issue became so challenging that I placed myself on a drug holiday and discontinued treatment, against my physician's advice, just to avoid having to deal with barrier to treatment. As my health declined and I struggled with thrush on three separate occasions, my choice to decline treatment proved me gravely endanger my health. When I advised my doctor of the decision, I recall look on my doctor's face as he marked in my file that he advised patient that possible consequences can be death.
Over the past few months as our local health department underwent extreme changes. While some of the changes alarm me and have yet to instill full community confidence, I am pleased that they implemented changes to their phone system; so hopefully, no one will be lost in the labyrinth of voicemail hell.
As a community, we will not discover the positive change and solutions for issues that gravely impact our lives until we as the affected community rise up, unite and come to the table to offer realistic solutions, demand reasonable change and put in the time and energy to make that offer a reality.