27 June 2020
Larry Kramer used to wear a lot of turquoise jewelry on both hands.
When Kramer moved to New York City in the 1970s, a fortune teller told him he must always wear something turquoise to look after his health. He trusted that claim. In the years that followed, Kramer survived the liver disease hepatitis B and had a liver transplant operation. He had also battled HIV for more than 30 years. HIV is the name of the virus that causes the disease AIDS.
Kramer, a playwright and AIDS activist for many years, once said "God knows how" he survived all those health problems. He spoke with VOA before dying of pneumonia last month. He was 84 years old.
A series of antiviral drugs kept Kramer and millions of others with HIV alive for many years. The first of those drugs was studied and received U.S. government approval in the 1990s.
But before that success, the search for an effective treatment took more than 10 years and caused fierce clashes between Americans and the government.
Kramer launched AIDS activism in the United States. He demanded money for research and treatments for a mysterious disease that researchers identified in 1981. They would later link AIDS to the human immunodeficiency virus, or HIV, which most often is passed sexually. Infected people accused the government of not taking steps to fight a disease that was mostly killing gay men.
"Ronald Reagan, who was president, never even said the word AIDS" until his second term in office, Kramer said.
By the end of 1986, more than 16,000 Americans with AIDS had died. In 1987, Kramer started ACT UP, the first group to put together loud, energetic protests over an epidemic which had no effective treatments.
Silence = Death
A protest on October 11, 1988 would become ACT UP's most memorable clash with the U.S. government. The group forced the Food and Drug Administration, or FDA, to close its headquarters, near Washington, D.C. That day, ACT UP blocked roads to the FDA offices. Protesters lay on the ground in front of the building with homemade tombstones. Activists hung a sign above the entrance to the building with ACT UP's saying: Silence = Death.
Richard Klein was the FDA's representative to the AIDS community at the time. He called ACT UP's protest "a great wake-up call for the FDA."
Speaking with VOA, Klein recalled the uneasy days between the AIDS activists and federal officials. And he noted that changes did come. Activists were added to FDA advisory committees as patient representatives. The agency expanded patient access to experimental drug studies. Many of those studies were sped up and extended. Trial patients whose health was failing were moved to groups getting the drug or drugs being tested.
"It took people who were dying to really make the point of 'We don't want to die in these clinical trials,'" Klein said.
Yet AIDS patients continued to die — 300,000 in the United States by 1995.
The most widely used drug at the time, AZT, was developed in the 1960s and approved as an AIDS treatment in 1987. AZT did slow the weakening of patients' natural defenses for fighting disease. However, the HIV virus became resistant to the medication and the deadly path of AIDS continued.
New class of drugs
In June of 1995, the FDA approved a study of saquinavir, the first of a new group of drugs called protease inhibitors. They were designed to prevent the HIV virus from reproducing.
These drugs were thought to be a way to end virus resistance issues, Klein explained.
Saquinavir proved ineffective by itself. But when combined with AZT and other anti-viral medication, it led to an increase in white blood cell counts in AIDS patients. That was a clear sign that the body's disease-fighting systems had begun to recover. Most importantly, the HIV virus did not develop resistance to the combined drugs.
Fewer than four months after getting the results, the FDA gave the fastest drug approval ever to saquinavir as part of a combination treatment for HIV/AIDS.
"It completely transformed the lives of HIV infected individuals," Anthony Fauci told VOA.
Fauci is director of the National Institutes of Health, or NIH, and currently leading NIH's battle against COVID-19. He supervised much of the U.S. government's efforts against AIDS from 1984 forward. Fauci noted that the arrival of protease inhibitors marked "the first time we had highly effective drugs against HIV."
Ending a dispute
In addition to physical healing, the arrival of life-saving drugs would lead to an end to the public clashes between the FDA and AIDS activists.
For example, during the worst of the AIDS epidemic, Larry Kramer called Fauci a "murderer" and other things. Over time, the two men grew to respect and like each other.
Kramer called Fauci a "friend" in his interview with VOA. Writing for TIME magazine after Kramer's death, Fauci praised Kramer's activism. He added, "I will miss a lot about Larry, but I think his warmth most of all."
Protease inhibitor drugs saved countless lives after 1995. In recent years, the drugs have proven effective in stopping HIV infections when taken as a preventative. Even with this progress, there is no cure and no effective vaccine for HIV/AIDS.
I'm Alice Bryant.
Carolyn Presutti wrote this story for VOA News. Alice Bryant adapted it for Learning English. George Grow was the editor.
Words in This Story
turquoise - n. a bluish-green stone used in jewelry
fortune teller - n. a person who claims to use special powers to tell what will happen to someone in the future
playwright - n. A person who writes plays
pneumonia - n. a serious disease that affects the lungs and makes it difficult to breathe
antiviral - n. A drug or treatment effective against viruses
gay - adj. sexually attracted to someone who is the same sex
epidemic - n. an occurrence in which a disease spreads very quickly and affects a large number of people
tombstone - n. a stone that marks the place where a dead person is buried
access - n. a way of being able to use or get something
transform - v. to change something completely and usually in a good way