My twin daughters were born in August of 1981, just two months after a publication from the CDC reported the first cases of a rare lung infection that eventually led to what became known as the AIDS epidemic. Because they were very premature, my newborn daughters required numerous blood transfusions from Irwin Memorial Blood Bank in San Francisco. One daughter received over 40 different transfusions. In 1985, the FDA approved the first blood test to detect HIV antibodies in the blood, and blood banks began their first screening of their blood supply. It was shortly thereafter that my wife and I received a letter from the SF blood bank that one of the transfusions my sicker daughter had received was identified as being from an HIV positive donor. It was unknown if the donor was HIV positive in 1981 because there was no test then, but the blood bank advised HIV testing of the recipient, my daughter. 1985 was the same year that Ryan White, a hemophiliac teenager from Indiana with AIDS, was discriminated against and denied entry to his middle school. My wife and I were aware that there was no effective treatment for HIV, and we were concerned about public discrimination of anyone identified as being HIV positive. In 1988 we finally took our twin daughters to a private laboratory outside of my workplace for confidential blood tests to check for HIV.
While completing my final months of residency at UCLA in 1981, I was witness to a cluster of young gay men in the hospital with unusual infections. These types of infections were also observed in other patients at UCLA who were bone marrow transplant recipients. It was like some alien had weakened their immune systems allowing entry to strange fungi, parasites, bacteria and viruses. In December 1981, the New England Journal of Medicine published the first major article describing this new syndrome, called “a potentially transmissible immune deficiency.” It occurred to me these were the very same sick men I had observed dying from this illness just as I was leaving my medical residency. Later, as an internist at Kaiser, I cared for several patients with AIDS, most of whom died in the 1980’s and 1990’s because of ineffective treatment. It is always sad for me when a patient of mine dies, but witnessing young people die in their 30’s and 40’s was particularly depressing.
Over 1.1 million people are currently living with HIV in the U.S., and about 50,000 people are still infected each year. The cumulative number of people in the U.S. who have died from AIDS related diseases is more than 650,000. (This is more than the combined American deaths from WWII, Korean War, and War in Vietnam, Iraq, and Afghanistan War!) Worldwide, HIV has caused more than 36 million deaths. Initially, since most people who were dying of these rare infections and cancer were gay men, the syndrome was called Gay Related Immune Deficiency or GRID. However, doctors soon realized that other people were also developing the disease including recipients of blood transfusions, IV drug users, heterosexual and bisexual women, and newborn babies. (HIV can be spread during pregnancy, delivery or through breast milk.) While there is no cure yet or vaccine for HIV, with medication it is expected that most people will have near normal life expectancy. The natural history of HIV is that there may be a clinical latency or asymptomatic period on average of 8 years, but could be as long as 20 years. AIDS itself is defined by a low count of CD4 T cells below 200 (the T cells which provides us with immunity), or specific diseases associated with HIV infection. It would not have been unusual for my twin daughters to be asymptomatic at age six or seven if they were HIV positive.
Back to my daughters. After two days of waiting for the results, I could not stand the suspense any longer so I called the laboratory. The lab receptionist reported that one of my daughter’s blood test was non-reactive for HIV, but the lab was still working on the other one. The blood sample the lab was still investigating was from my daughter who had received over 40 transfusions, the same daughter who had received blood from a donor who was later identified as being HIV positive. I knew also, that if one test result for HIV is positive, a second method of testing is always done to confirm it which requires more time to analyze. I could barely function since I was overwhelmed with worry. Finally I received the results. All tests were normal! The months that my wife and I spent in worry and dread were over. In the process of going through this with my family, I discovered a great reason to recommend routine HIV screening for my patients – the profound emotional relief it can bring by having a normal result. I still preserve my daughters’ HIV results in a special keepsake file.
Since 2006, the CDC has recommended HIV testing for all Americans aged 13-64 during routine health encounters. It is estimated that 25% of people who are infected with HIV are unaware of their status. June 27th, is National HIV Testing Day. For more information, go to National HIV Testing Day .
It is time for you and your loved ones to know if there is a potentially life threatening virus lurking in your body. Compared to the 1980’s there is now good treatment even if one does test positive for HIV. A normal test result is worth the magnificent feeling that you have dodged at least one bullet in your life.
For more information about HIV, go to Aids.gov.
Jerry Saliman, MD is a volunteer internist at Samaritan House Medical Clinic in San Mateo. He retired from Kaiser South San Francisco after working there more than 30 years. While at Kaiser SSF, Dr. Saliman was also Chief of Patient Education. He received the 2012 “Lifetime Achievement Award” given by the Kaiser SSF Medical Staff.
Editing acknowledgement: Ellen Saliman
Neither the PJCC or our guest columnists provide medical advice, diagnosis, or treatment. Please make your health care decisions in partnership with your health care provider.