In 1981, a cluster of dark purple skin lesions called Kaposi sarcoma (KS) appeared on a group of gay men in New York and California. Kaposi sarcoma became the first presenting sign of AIDS at the start of the epidemic. The disease was actually first recognized in the late 1800s by a Hungarian dermatologist named Moritz Kaposi, who saw it in old Mediterranean men. It is characterized as a cancer that usually appears as tumors on the skin often on the legs or face, but can also develop inside the mouth, the lungs, or the digestive tract. In the early 1980s, the disease made a reappearance in the medical world, as the Center for Disease Control began receiving numerous reports of KS in previously healthy gay men who were also experiencing other infections and dysfunctional immune systems. In response, the CDC established the Task Force on Kaposi’s Sarcoma and Opportunistic Infections to investigate this disease. On July 3rd, 1981, while research was being conducted, the New York Times published an article titled “Rare Cancer Seen in 41 Homosexuals” which contributed to the public’s referencing of HIV/AIDS and Kaposi sarcoma as the “gay cancer.” Kaposi sarcoma was incredibly stigmatized, as it was a visual sign that indicated being infected with what was at the time still a mysterious disease. The 1993 film Philadelphia, starring Tom Hanks and Denzel Washington, depicts the awful reality faced by young men who would suddenly develop purple spots everywhere from KS and would be instantly classified as a person with AIDS. Unfortunately, there were no drugs available at the time to manage KS and when left untreated, it would progress and spread, becoming fatal.
Meanwhile, during this incredibly eventful and scary time in the medical field, my mother, Toby Maurer, was getting her masters in public health at UCLA. She remembers hearing about KS for the first time in 1982, when a man from the CDC came into her classroom to tell them that it had been detected in thirteen gay men. From that point on, my mom went on to complete residencies in family practice and dermatology and two fellowships in HIV medicine at the University of California, San Francisco. Ever since, her focus has been in Kaposi sarcoma, researching and treating patients both in San Francisco and in Africa. In 1994, a close colleague of my mother’s named Pat Moore along with his wife Dr. Yuan Chang, discovered the virus that causes Kaposi sarcoma, called the “KS herpes virus” or Human Herpes 8 Virus (HHV8). As it turns out, this virus has been around in Africa for a very long time. However, it sits quietly, causing no harm until something like HIV turns it on. This has been the case in Los Angeles, San Francisco, Paris, and New York as well, where it has been discovered that 65% of gay men have the virus but don’t show symptoms unless they become infected with HIV.
In 1996, when antiretroviral drugs were further developed, they were incredibly effective in managing HIV and allowing people with AIDS to live long, normal lives. They also had the effect of essentially wiping out Kaposi sarcoma in HIV-infected patients and for about ten years in the United States, KS disappeared. In the meantime, KS was running rampant in Africa, affecting women, children, and men in HIV and non-HIV infected persons. Similarly to the gay community in the United States, there is a large background rate of the HHV8 virus in Africans, with about 40% of the population having the virus. The incidence of KS in Africa is about four times the incidence of prostate and breast cancer in the US, which is a telling comparison of how common the disease is. People who have the KS virus have a four to six times larger risk of dying compared to those who have HIV and no KS. Children show signs of the virus early in life and it is thought to be transmitted from their mother’s saliva. But once again, it is not enacted until the HIV infection comes along and turns it on. HIV’s extreme prevalence in Africa is why there is also so much Kaposi sarcoma. Even with HIV drugs, people are dying, which may be because they are not receiving the drugs soon enough, but also separately, it seems that the KS itself increases the death rate.
Chemotherapy is another form of treatment that is necessary to help manage it, as HIV drugs alone are not helpful for this disease. The best chemotherapy to manage KS is called liposomal doxorubicin, which is easy to give and easy to tolerate, but unfortunately it is very expensive and thus not easily accessible in Africa. This is a huge problem. My mom is working to make this drug more available because people are still dying frequently from the current chemotherapy used in Africa. Even if patients survive, they get horrible leg swelling which makes them unable to work or walk. With the average age of KS patients being 30–34, this is essentially taking out a young work force, causing greater social and economic repercussions. In response to this issue, my mom and her colleagues are getting Unna boots (compression gauze lined with healing cream worn on the lower leg) out to these people in Africa so that the swelling in their legs is reduced and they can function.
Another huge problem in Africa that is contributing to the continuation of the disease along with HIV/AIDS is the stigma surrounding it. Because of the striking visual impact that KS has, patients are scared of going to doctors, many of whom tell them they are cursed and nothing can be done. In attempt to tackle this issue, my mom and her colleagues are training local doctors specifically in Kenya and Uganda, on how to detect KS in their patients, and generally working towards making the medical system more responsive. My mom once told me a story of seeing a 12-year-old boy in Mbarara, Uganda, who was found abandoned by a social worker. His mother died of AIDS and his father was an alcoholic. He didn’t want to go to school because kids and teachers thought he was cursed. His KS had gotten so bad that doctors wanted to amputate his leg so he could walk but my mom stopped them and gave him radiation treatment instead, which allowed him to live for two more years with both legs. He had wanted to see my mom, the “American doctor,” to ask her why God did this to him. Tragically, he passed away. If he had received good chemotherapy, he would have lived.
In 2006, my mom reported that we were starting to see a KS come back in the US, even in HIV-infected men who were controlled on their HIV drug. Now, it seems that we are seeing this coming back not only in well-controlled men, but as a presenting sign in newly infected men and even in gay men who are HIV-negative. Researching this phenomenon is my mother’s current work in the US. KS is of epidemic proportions in Africa and is coming back full force in the US, despite HIV drugs. It is clear that we need better drugs for KS specifically. While there is a lot of incredible progress being done in the field of HIV/AIDS, Kaposi sarcoma is still an extremely important and relevant issue that deserves equal knowledge from the public, research and treatment from doctors, and funding from institutions.