Care Lessons from Early Days of an Outbreak

It seems like only yesterday.

I was a second year physician assistant (PA) student at Stanford University Medical Center PA program in 1981. We had a lecture that year from physicians at the San Francisco Public Health Department, regarding a disease that was referred to at the time as "Gay Related Immune Disorder" or GRID. It was also known as the "Gay Cancer." They had begun seeing crazy diseases in young supposedly healthy young gay men like Kaposi's Sarcoma and Pneumocystis Pneumonia. They had no clue as to the cause, but they recognized that it was spreading like wildfire. It was fomenting fear and panic both in and out of the gay community.

As a young PA student, I didn't know what to make of it, and I honestly didn't pay much attention to it as I wasn't gay, and I didn't think that it affected me personally. Unfortunately, I was wrong and would painfully find out all too soon. 

A recent article highlights this same time period in New York City, when a group of gay men got together in Greenwich Village to start a movement that would morph into world-wide activism. It is difficult for me to watch documentaries of this time, and it is especially hard for me to watch the end of "Milk." It's the biography of Harvey Milk, former Mayor of San Francisco. At the end, there is a candle light march from the Castro District to City Hall.

The Castro District was ground zero for the West Coast gay movement. Both of my brothers lived there. It was a time of blossoming of the gay culture as men and women, for the first time, felt safe to "come out" and live an openly gay lifestyle.

My older brother Walter was the first to succumb to HIV/AIDS. He began to get ill in 1984 and succumbed to January 1987. My younger brother Mark survived six more months and died that summer. What's harrowing for those of us who lost loved ones to HIV / AIDS during this time was if they and others would have just survived a few more years, they would likely be alive today.

The reality of the disease in the early 1980s is that it was universally a death sentence. An entire generation of men were wiped off of the face of the earth. My brothers have only one contemporary who has survived to this day. They are all gone.

Being the "medical person" in the family put significant stress on me to be informed and make decisions about my brother's care as they became unable to do so for themselves. I was trained as a paramedic and PA at the time when rule number one was "don't get involved emotionally" with your patients. Moreover, after five years working in trauma as a mobile intensive care paramedic, I was fried emotionally. I didn't cry when my brothers died.

The healing came years later at a display of the HIV /AIDS Memorial Quilt in Bakersfield, Calif. As I placed pictures of my brothers, one set healthy, and one set them dying on their panels,  I was finally able to grieve. It was an important moment in my life.

At the time, I was very active with the HIV / AIDS group locally, and we did a lecture series that covered medical, emotional, and family issues. It was therapeutic for me to talk about my experiences as a family member who also practiced medicine. By that time, HIV stopped being a disease that killed you and became a disease that you lived with.

Reading that article about the early days of the disease stirred up significant emotion thinking about the suffering and loss of all of those affected by HIV /AIDS over the decade. From a clinical standpoint, this health crisis pointed out the fact that when dealing with an issue such as this, research, science, epidemiology, and facts are the best weapons to deal with the challenges presented to our communities and society. Politics and hysteria only made the problem worse.

I can still remember, as a health care provider, the "fear" that came from the unknown. It is our job and calling as health care providers to be at the forefront of education, science, and evidence based medicine as we deal with the public health challenges of the 21st century.