— Earl Fowlkes. Jr, President/CEO
I normally do not join in the chorus of organizations and leaders acknowledging World AIDS Day not because I don’t care but rather because I don’t have anything different to add to the dialogue. This year is different for me as I recently found a thank you note written from a woman I met while volunteering thirty years ago this month. I then realized that I have been volunteering, working and advocating for and with People Living With HIV/AIDS (PLWHA) since 1986.
I started volunteering during the Reagan years when the federal government
stood idly by as thousands of people around the world died from AIDS. There were very few drugs available and all one could do was to be supportive of friends, family and neighbors as they dealt with the onslaught of illnesses caused by their compromised immune system. I saw my circle of friends steadily becoming smaller and felt I had to do something. So I volunteered at the bequest of a friend in Hudson County, N.J. who needed someone to be a facilitator for HIV positive support group. I tried to talk my way out of this because I had no experience. My friend told me the only experience one needs is be a good listener and have compassion. This was the time before HIV/AIDS “experts” and professional staff.
The group was made up of 12 to 15 men and women – Black, White and Hispanic; straight and gay; citizens and noncitizen; old and young; college educated – sat next to active IV drug users, all coming together weekly to support each other. We always had food contributed by the participants and rich fellowship with people who knew that there was a good chance they could be dead within a year. There was one woman from Australia–“Betsy”–who become positive through a blood transfusion after an auto accident. “Betsy” didn’t speak much but her smile made everyone else smile. Sometimes she missed the support group because she was too weak to get come. One afternoon, I stopped by the pharmacy and picked some pain medicine for “Betsy” and dropped them off at her apartment. She invited me in and we chatted for a few minutes as she received very few visitors. I noticed a stack of dishes in the sink so I got up and washed them as we chatted. “Betsy” sent me a note three days later thanking me for picking up her medicine and washing her dishes. She passed away a few weeks later.
These were the difficult days before government programs and mega HIV/AIDS providers. We had to feed, house and bury our friends, loved ones and even strangers at a time when there was very little information or understanding of HIV/AIDS. The stigma of HIV/AIDS was so horrible that it is often difficult to reflect on those times without becoming emotional. Grief and death were our constant companion. Everyone in the support group eventually passed away.
As I fast forward to present day, I am so thankful there has been so many advances in HIV/AIDS care and treatment, and prevention with more people living with HIV/AIDS than dying. Many of us don’t invoke those dark days or never experienced them. However, the general election of 2016 has ushered a different political environment come 2017 and for many this could be the harbinger of more dark days to follow. Will our new leaders reduce HIV prevention, drug assistance, care and treatment funding? Will HIV criminalization become the law of the land? Whatever the result, I am prepared for the fight to never return to those dark early days when our government did not care about our friends, family and neighboring as they laid dying with HIV/AIDS. Better a thousand times to go down fighting than to dip your colors to dishonorable compromise. I keep “Betsy’s note to remind me from whence we have come.