HIV in Older Adults: A Patient’s Perspective

AS A COMMUNITY organizer, activist and gender nonconformist, Reginald Brown, MEd, is as outspoken as he is passionate about issues surrounding social justice and healthcare reform. The Kansas City, Kan., native graduated from the University of Kansas in 1975, and went on to teach dance and choreography in Mexico City, Amsterdam, Berlin and Athens. Brown was back in the States for a visit when he was originally diagnosed with human immunodeficiency virus (HIV), and at the time, doctors gave him two years to live. That was 31 years ago, and today, this unstoppable 65-year-old is living proof that medical breakthroughs and treatment-plan compliance make it possible to survive and even thrive with what was once a universally fatal virus.

BSTQ: Tell us about your HIV diagnosis.

Brown: I was diagnosed on Aug. 15, 1986. Although I had been living and working in Athens, Greece, I was home visiting my parents in Kansas City. Doctors told me I had two years to live, and I remember feeling like I had been punched in the stomach. When I got back to my parents’ house, I immediately called an 800 support number I’d been given. I was relieved because I was talking to someone who was also HIV-positive. Today, I consider myself very fortunate because I have had no AIDS-related illnesses and have been noninfectious for 14 years thanks to the antiretroviral cocktail I take.

BSTQ: How did your HIV diagnosis impact your quality of life?

Brown: In a strange way, my diagnosis was a triple blessing. For one thing, I didn’t have to worry anymore about contracting HIV. It forced me to prioritize my life and focus on what was important. It also taught me to live in the moment and appreciate life.

BSTQ: What is your treatment plan?

Brown: I take four antiretrovirals twice a day. I see my doctor every six months unless there is an issue that needs addressing. I take one pill for depression and see my psychiatrist every three months. I also take baby aspirin, Claritin for my sinuses and four cholesterol pills daily.

BSTQ: How is your health overall?

Brown: I am healthy, and my T cells are higher than they have ever been. The only issue is my high cholesterol, which may be the result of my HIV cocktail, the HIV itself or my eating habits.

BSTQ: Tell me about your relationship with your healthcare providers. Do you feel your issues are understood and addressed?

Brown: I have had three primary care physicians since my diagnosis. I was with John Montana, MD, from 1991 until 2004, when he passed away. Dr. Dalton was his backup and took over the practice. Dr. Dalton left the clinic in May last year, so now I have Dr. Sarpel. I had a fantastic relationship with my previous doctors and look forward to the same with Dr. Sarpel. It is of the utmost importance that my primary care physician is someone who I know and can question and discuss my treatment plan.

BSTQ: Are you a part of any support group?

Brown: I participated in the Friends in Deed 40 over 40 long-term survivors eight-week course because I learned there are many long-term survivors and thrivers. I took the course because I answered an email seeking 40 men over 40 who were diagnosed before 1997, the year when the lifesaving cocktail became available.

BSTQ: How do you pay for your medications, and have you had financial difficulty due to the high cost of care?

Brown: All of my medication is covered by Medicaid, and my healthcare is covered by Medicare, both of which predate the Affordable Care Act. If they cut Medicaid, my quality of life will deteriorate, which is why I’ve been active in “Kill the Bill” protest activities in my area.

BSTQ: How do you maintain a positive attitude?

Brown: My spirituality allows me to find a blessing in every situation. I may not be able to control what happens to me, but I can choose how I respond to it! I have determined to live no matter what because death is inevitable. I refuse to waste time being consumed by it because I am too busy living. I am still living and creating my dreams every day by the grace and mercy of my ancestors and Creator.