Yes it is 40 years old now and I can say I have known it most of these 40 years. How does one celebrate a pandemic? As someone who went through my teens in the 80s, I was scared of it. As a medical student and physician I saw many patients die of it. At some time in Ghana almost of all those diagnosed where admitted to an isolation unit. Many never went home from that unit. Sometimes it was because the families will not take them back. Usually, they died before they were stable enough to go home. Their mangled bodies and gaunt expressionless faces were a constant reminder of what this disease could do to its victims. It looked like a scene out of a horror movie but it was real. This was the life we knew before treatment became available.
With this first pandemic of my life Science fought back and over decades won many victories. It has not always been easy though. I have managed many of those afflicted and and seen many live healthy lives. There are those who will come and tell me they were cured by some prophet, many of whom I had to retest just to convince them this was not true. I have had women who will only take their medications when pregnant. All did deliver healthy HIV negative babies mostly due to effective but difficult teamwork. Some will not take medications because they were concerned it will damage their liver or kidney. Yes, I have seen a lot, but I don’t believe I have seen it all yet. I can confidently say that because I am yet to see someone treated and cured of HIV.
The Emergence of A Virus That Wipes Out A Person’s Cellular Immunity
Forty years ago on June 5th 1981, the CDC reported cases of Pneumocystis carinii pneumonia (PCP) among 5 previously healthy young men in Los Angeles. All these men where reportedly gay and 2 had already died at the time of the report. The report suggested these individuals had some immune deficiency associated with a common exposure. There was a strong suspicion that the exposure was either of a sexual nature or associated with their gay lifestyle. From these initial reports in San Francisco, by May 1982 cases had been reported from more than 20 states. A New York Times article described this new disease as GRID gay-related immunodeficiency. This was before the CDC came up with the term Acquired Immune Deficiency Syndrome (AIDS).
Today we know that HIV probably jumped across species from monkeys and chimpanzees to man. The most common subtype of HIV across the world, HIV-1 group M, probably crossed from chimpanzees to humans somewhere in the Democratic Republic of Congo in the early 1920s. This virus eventually ended up in the US through Haiti. It is still not well documented how HIV ended up in the Americas from Central Africa but one theory was through Haitians who served in the Congo with the United Nations. Sero-epidemiologic research using computer generated algorithms suggests that most of HIV in the US has a common ancestor with that in Haiti. Thus HIV-1 sub-type B the commonest subtype in the US, Haiti and Western Europe was likely introduced to the US from Haiti.
The Lives Behind All These Numbers
Behind all these headlines and numbers are lives that have been changed by this pandemic. One such person was the 34 year old lady who was admitted for aseptic meningitis sometime in 1995 at one of the major hospitals in Ghana. What this diagnosis meant was that even though she had symptoms that could mean an infection of the membranes around her brain, the fluid around her brain did not grow any bacteria (bugs) that we could treat. When she started having obvious signs of delirium and hallucinations it was clear she was not one of the usual ones who got better after a few days of clinical support. She died of HIV less that 3 months after her diagnosis at a time when there was no treatment in Ghana. She left behind 3 young children and a husband who most probably also had HIV.
In 2006 I had this other lady in Chicago who was on ARVs and doing very well. This patient was on the housing assistance list and living with a family member. She was very good with follow-up and so it was surprising when her viral load crept upwards above 5000 copies. When she insisted she was taking her medications we ordered a HIV genotype to determine if she had developed resistance. The results was surprising to everyone; even though her viral load was high she had not developed any resistance. Simple explanation was that she was not taking her medication. When we discussed her situation with case management we realized she made a decision to stop taking her medications to see if her CD4 count could drop below 200 cells. This would make her eligible for the housing first program in Chicago.
Which is Worse; Being Diagnosed With HIV or Being Forced Out of The Closet
For many gay men in the Black community a diagnosis of HIV was fraught with many problems. Most of these men were diagnosed whilst still in the closet. One such gentleman lost everything that mattered to him with his diagnosis. After he informed his family of his diagnosis he was thrown out of the home. HIV cost him everything at a time in his life when he needed all the support he could get. I also remember the 26 year old gentleman whose mother said to me; “all I wanted was a grandchild from him! I have given up on that happening, but I want to make sure he gets the medical care he deserves.” She brought him to our clinic and he gave us consent to share his medical records with her. A gay black man who got the support from his family the other man did not get.
After 40 years HIV is still with us, a cure has not yet been discovered. There are many who are hopeful that a vaccine or cure may be on the horizon due to synergy from Covid-19 response. The community is very grateful for all the breakthroughs. So today as we remember 40 years of HIV I want to challenge everyone, to focus on the many lives that this 40-year old pandemic has changed. I know if we focus on those lives we would never get lost in our quest to find solutions that impact lives.
By Dr. Leonard Sowah an Internal Medicine Physician in Baltimore, Maryland