In memoriam to Bill – from nightmare to a normal life

Since 1988, December 1 has been designated World AIDS Day. That was exactly 2 years after my first patient, Bill, died from AIDS. And in the years to follow, many more were diagnosed and perished from a progressive loss of function as they were overtaken by fungal, bacterial and viral organisms. Sounds like some sci fi movie, and it was. To watch a patient wither away from being a healthy, robust individual to a frail, emaciated soul was terrifying; and there were limited tools at the time to change its course.

I often think of Bill. He was the kindest and most handsome young man who worked at my hospital in 1989. He was always cheerful and every person who met him fell in love with him. Well, you know how this story ends. Yes, he contracted HIV and despite all treatment options, developed AIDS with all its opportunistic infections. This is not how any doctor wanted to learn about this condition. I loved him. He was a few years younger than me with so much life ahead of him that was just abruptly taken away. Thank goodness he had me as his doctor: Not to sound self-serving, but I knew more than most people about HIV and misinformation and stigmas surrounding it. I knew you could not contract it by hugging your patient. And yes, he was hugged by me…over and over again. Once hospice was involved, I visited him and continued to be as nurturing as I could be. I didn’t have children at that point, yet I felt as if I became more like his mother than his doctor.

In the 1980s, this condition was called Acquired Immune Deficiency Syndrome, which explains the acronym AIDS. The virus had not been identified until 1984 when its transmission by blood, sexual intercourse and vertical transmission from mother to child was determined. I still recall the public faces of AIDS including the actor, Rock Hudson. There was Ryan White, just a boy when he contracted HIV from a contaminated blood transfusion while undergoing treatment of hemophilia. These diagnoses stirred the decade long unwarranted fears and ignorance from irate parents and students who rallied against his presence in school. Believe it or not, people who were on his newspaper delivery route cancelled subscriptions for fear from his mere touch of the paper. It was not until Ryan's death in 1990 that US congress passed the Ryan White CARE act to fund services for people living with HIV and AIDS.

As I practiced for decades on, there was still ongoing fear and ignorance surrounding this diagnosis despite the release of the movie Philadelphia with Tom Hanks in December 1993. This earned Hanks his first Academy Award for playing the lawyer, Andrew Beckett, of a highly prestigious law firm who was fired when they learned of his HIV status. As hard as he tried to hide the fact, the skin lesions, known as Kaposi's sarcoma, gave it away. In the early 1990s, this diagnosis was still a death sentence, and the medications could not provide robust enough treatment to change its natural course.

The development of Highly Active Anti-Retroviral Therapy (HAART) in 1996 was a breakthrough in treatment. Prior to the development of HAART, the treatment consisted of one to two antiretroviral drugs, which had very limited control of the virus. People would develop multi-drug resistance, which meant treatment failure. Being without effective treatment resulted in the virus rapidly replicating itself throughout the body. Scientists then discovered that by combining three or more drugs, the replication of the virus will stop at different life cycles – and thus, HAART was born. In addition to limiting the spread of the virus throughout the body, it also reduces the viral load and subsequently, the presence of opportunistic infections.

For more on what HIV is, here is a summary: HIV at a Glance.

So where are we today? In a way better place. Thankfully the sci-fi films have ended. The younger generations are knowledgeable, and the stigma has lessened. This is in part due to the improved therapy that not only prevents T helper cells from dying but can eliminate the actual virus and minimize the side effects of treatments. In the early 2000s, one still needed to take a whole handful of pills to manage the disease. Currently people living with HIV can manage with one pill a day, or even just an injection every other month.

The care mandates for people living with HIV, includes seeing a medical specialist every 6 months to check on viral loads. These visits can result in preventive care for co-morbid conditions, such as screening and prevention of atherosclerotic disease, diabetes and other metabolic conditions. Seeing your doctor every 6 months, there is ample opportunity to catch conditions in early stages or prevent conditions from occurring in the first place.

Lastly, when HIV virus is undetected and sustained as such, it cannot be transmitted. This is a fact. My hope is that during this decade cures are developed, ultimately ridding the globe of HIV. In the meantime, those living with HIV can live a normal life with life expectancy that has approached the general population. With every advancement, my thoughts turn back to that wonderful, young man, Bill. It was a privilege to know him and there are now no doubts that thousands like him, living well with HIV are among us.