AIDS at 30: The Real Story

June 5th marks the 30th anniversary of the recognition that a new disease was killing our species. It would become our era's Great Plague, killing somewhere between 28-35 million human beings, and infecting about 75 million with HIV. That June 5, 1981 paper by Dr. Michael Gottlieb of UCLA, published in the Morbidity and Mortality Weekly Report, made a mistake that has haunted the AIDS epidemic for three decades.

Gottlieb noticed that otherwise healthy young men were gasping for air and dying from infection with the usually benign pneumonia parasite, Pneumocystis carinii. They shared one other thing: they were all gay. Los Angeles colleague Dr. Joel Weisman had a cluster of young men also dying of a usually benign infection, the fungus Candida albicans: also, all gay men. In San Francisco Dr. Donald Abrams was treating young men suffering the grotesque, metastatic purple skin blotches of Kaposi's sarcoma, a type of cancer seen only in old men. His young patients were all gay men.

Physicians across the globe drew similar conclusions: this new nightmare was a homosexual problem. The Centers for Disease Control in Atlanta was given a measly budget of $200,000 to make sense of this. By Christmas 1981, the new disease was dubbed GRID, Gay-Related Immunodeficiency Disease.

The assumption that the ailment was uniquely associated with homosexuality was a tragic error that will haunt history forever. It allowed a conservative President Ronald Reagan and most top political leaders worldwide since to turn their backs on an exploding plague. People had been dying of AIDS all over the world, but as a result of heterosexual encounters or injections of narcotics or medicines with unclean needles. Dr. Fred Siegel treated a Dominican immigrant at Mt. Sinai in New York in 1979: she died of AIDS before the disease had a name. Dr. Henry Masur had a group of 11 GRID patients in his New York practice in 1981, half of whom were heterosexuals or drug injectors. A female prostitute with the moniker Mrs. Profit gave birth in 1981 to twins, both of whom died in San Francisco of pediatric AIDS. And Drs. Margaret Fischl in Miami and Sheldon Landesman at King's County Hospital in Brooklyn had practices that were overwhelmed with dying women and children, all of them Haitians.

It wasn't until July 1982 that a small CDC team stumbled on their most vital clue in this out-of-control epidemic: dying hemophiliacs. Hemophilia is an inherited blood disease linked to the Y chromosome, therefore only found in males. The most common form leaves the boys unable to make a crucial blood clotting protein, either Factor VIII or IX. Without these Factors, a scraped knee, mosquito bite or bloody nose could all be lethal, as once bleeding begins, it may never stop. In the 1960s, scientists figured out how to extract the Factors from normal blood, creating concentrates that hemophiliacs could inject when they were cut or bruised, causing their blood to clot and saving their lives. In 1973, the National Hemophilia Foundation worked with the U.S. government to create a network of 141 blood factor treatment centers. And by the mid-70s, a miracle unfolded, as the first generation of hemophilia survivors came of age, having survived childhood injuries, and become adults.

But to stay alive these men still required periodic Factor VIII or IX injections, and therein lays the greatest crime of our modern plague. The Factor proteins are so potent that only scarce numbers can be found in a pint of normal blood. To make a life-saving concentrate of Factor, drug companies needed thousands of pints of blood, and each Factor injection contained the blood of as many as 13,000 people. By the time a boy with hemophilia reached the age of 18, he'd likely been exposed to the blood of more than 100 million people. The average exposure rate for Factor VIII users was to the blood of 3 million people every year. We know the virus was there; a sample from one batch of Factor VIII was saved and then tested a decade later. It was HIV-contaminated and had been injected into 2,300 American boys in 1978. By 1981, more than half of all hemophiliacs in the U.S. were infected with HIV. The blood Factors made by U.S. companies, particularly Baxter and its foreign licensees, were sold all over the world. The scandals toppled Ministers in some countries, and resulted in hundreds of millions of dollars' worth of lawsuits against manufacturers, blood banks and government agencies.

HIV had probably been in the U.S. blood transfusion system for decades, but at extremely rare levels that were transfused into already-ill patients, failing to produce a chain of infection sufficient to draw public health notice. It was only when the hemophilia treatment system was created and presented itself in into a large population of young men, many of whom were sexually active, some of who were injecting drugs, that the plague really exploded. The CDC team figured it out in July 1982, but the blood bank and blood products industry blocked every attempt to mandate screening for viruses until 1985. And even after contaminated products were banned inside the U.S., manufacturers knowingly continued to sell and export HIV-infected and hepatitis virus-contaminated Factors and blood all over the world. Decent methods of treating blood to kill HIV were not developed until 1987, based on methods that had been in experimental use since World War II.

This hideous legacy haunts HIV prevention efforts today. Instead of GRID, the 1981 moniker for the epidemic might better have been BRID -- Blood-Related Immunodeficiency Disease. If today the worldwide AIDS prevention and treatment effort were focused on BRID, we might not have the shameful nightmare that we now witness. If we called this plague by its proper BRID name, there might not be hundreds of villages in China wherein half the adult population is HIV-infected, thanks to 1990s contaminated blood injections. East African governments might be aggressively tackling the now-soaring heroin use in their region, recognizing that droplets of HIV-infected blood lurk on the needles used for narcotics. The world would loudly decry the former USSR countries, nearly all of which in 2011 still render most forms of safe needle use by drug addicts and de-addiction treatments, such as methadone, illegal.

Remarkably, to this day many countries do not properly screen all blood supplies. Indeed, blood is big business, attracting criminals that sell adulterated products, and PAID donors, most of whom are alcoholic or narcotic users in need of quick cash.

On this dubious 30th anniversary of our 21st century plague, the delegates that will gather this week at United Nations headquarters in New York to debate the AIDS epidemic would do well to consider BRID. They will be under pressure to provide medicines to those already infected with HIV. We strongly applaud expansion of access to anti-HIV drugs for every infected person in the world. But remember that if a country today has a HIV prevalence of more than 20 percent of its young adults -- such as is the case in South Africa -- the virus will continue to lurk in unclean blood, blood products, unclean needles and inadequately sterilized medical equipment.

Think BRID or this awful history will repeat itself. Again, and again, and again.