30 years of pain and joy in AIDS field

Thirty years ago, five cases of an unusual pneumonia, all among young gay men ages 29 to 36, were reported by the Centers for Disease Control. Gay and bisexual men, injection drug users, hemophiliacs, newborns, and soon women with no apparent risk factors rapidly appeared in the literature. Marked increases in cases were reported from the nation's major cities, Philadelphia among them.

As I began my internal-medicine residency in Philadelphia in 1985, HIV had been identified and the test to detect the virus was licensed. Four years into the epidemic, physicians and health departments in the United States had reported a cumulative total of 10,000 patients with AIDS. The first 5,000 were reported over 37 months. The next 5,000 were reported in 10 months.

Fear of contagion was spreading faster than AIDS, delaying our nation's response and in turn giving rise to powerful political activism. Politics, stigma, medical advances, and grief - the learning curve was as steep as the epidemic.

In 1987, azidothymidine (AZT) was approved for AIDS treatment and those of us who had worked for years with too few medical tools eagerly prescribed it in doses that were later proven too high.

Following internal-medicine residency and training in an infectious-diseases subspecialty, I worked in several Philadelphia teaching hospitals where I directed HIV care programs. I served as the assistant health commissioner for infectious-disease control in the local health department, responsible for all reportable diseases and conditions in Philadelphia. Along with others, I supported the availability of condoms as part of comprehensive high school health programs and pushed for syringe exchange as an effective control of HIV spread among drug users who inject.

There was a time when the entire medical knowledge base of HIV disease could be taught in one hour. Now there is at least one scholarly volume for every medical and surgical specialty. With the advent of combination drug therapy, new medications, and tests, we update our talks at a frenzied pace: groundbreaking clinical trials, new drugs, new methods to monitor disease progression, ways to increase adherence to medications, studies on how best to have people able and ready to use condoms, use clean needles, stay healthy, stay safe.

Most recently, there are data indicating that some drugs used to treat the virus that causes AIDS may also be effective in preventing it among certain populations. If it holds true in more clinical trials, it could entirely change our approach . . . again.

Each person who has been involved in the AIDS epidemic has experienced the pain of disease and death along with the joy of incredible (albeit too slow at the start) advances in treatment and prevention. I am an infectious-disease physician, a public-health expert, and an academic dean. I am also a lesbian and a mother of two children, both growing up in the era of AIDS. I lost patients, simultaneously experiencing the decimation of my own community - medical charts removed from the racks and pages torn out of personal phone directories.

To the family in West Philadelphia that was able to fulfill a son's desire to die at home, I am glad I was able to bring needed comfort medication to his bedside. I was careful to not have the neighbors notice me.

To the grandmothers who brought their adult grandchildren to me for care despite their own fear of contagion, I know it was one of the hardest things you ever had to do, but you were often able to save the lives of those you loved.

To the women who took the newer medications, gave birth to uninfected babies, and lived to be healthy mothers, thank you for sharing this joyous part of your life with me, it was the first time we could truly prevent new infections.

To the hundreds of young people who were my patients and ultimately died before we had today's sophisticated tests and medications, I will always wonder if the nation's initial slow response was in some part responsible. Please know I did my best with the information I had - I think you do.

To those who were once so frail and sick but lived to experience the era of combination medical therapies, it's a thrill when I see you or hear you are doing so well.

In the United States, more than 600,000 people have died from AIDS since those early case reports. An additional one million are estimated to be HIV-infected, many not yet in care.

On every continent, political controversy surrounding sexual behavior and injection drug use remains, controversy that too often stands firmly in the way of life. In our country, thousands of people are newly infected each year despite all we know.

Thirty years into the AIDS pandemic there are clear medical advances yet huge gaps in care and prevention. I miss my friends. I miss my patients. I dream of the day when the story begins with the first published reports in 1981 and ends with effective prevention around the world along with a cure for all those infected and a way to deliver it.