Kudos. Living with HIV/AIDS for over 30 years since my HIV test in 1986. I have always taken pride in being able to pay my household expenses, bills, taxes and other responsibilities on time as well as participating in local HIV planning bodies and consumer empowerment programs. I would not have been able to this without the help of ADAP and Ryan White Programs.
Although this was not without considerable stress and effort because my income is at 350% of the federal poverty level (FPL), and my state’s (CT) ADAP eligibility is at 400%, yet Ryan White Parts A & B are at 300% FPL, leaving me and other consumers in a gap that is subject to the bombardment and rude harassment of medical collection agencies for medical co-pays.
I have been plagued with osteopathic and mobility issues for many years, and at the advice of physicians delayed the replacement parts until at least the age of 60. Now that I am becoming increasing immobile, unimaginable pain, I am being asked to justify how my osteo issues are HIV related. (I.e., and not age or other disease related )
I suspect my viral bloom was in 1980 while in graduate school spiking very high fevers and strange rashes. My body has been fighting HIV for over 36 years. Battle worn and weary, with added elements accelerated aging, I now question the logic of continuing to jump through medical hoops, take medications, and having my life revolve around medical issues.
I think there is a wisdom in the National AIDS strategy to have “unfettered access to quality health care”, because if it means jumping through hoops, being harassed by medical collection agencies and the systems that are suppose to be your supports become problematic, what point is their to being in care?
I can safely say that the number of people I have infected since my HIV positive test is zero (0) because I immediately sought medical help. It hasn’t been easy, and the answer I will give on if it “has been worth it?” varies with how I am feeling, the hassals and social isolation I am experiencing.