08.26.09

First in the Fight Against AIDS

In a Daily Beast exclusive, Steven Petrow presents excerpts from a never-before published essay about the AIDS epidemic that was written by the late senator before he died.

For those who don’t remember the darkest days of the HIV/AIDS epidemic, a plague that would fell hundreds of thousands in this country alone, there were no treatments and no hope. No hope, that is, except for Senator Edward M. Kennedy.

I knew personally the beacon of light that the senator provided in the fight against AIDS, both as a staff member at the San Francisco AIDS Foundation and as someone who watched many of my friends and colleagues get sick and die. In addition, for the better part of a month in 1986, I lived with a mistaken AIDS diagnosis, thinking that my future depended less on doctors and medicine and more on the senator’s courage and leadership.

“On tours of affected areas,” Kennedy wrote, “I was deeply moved by the sights and stories of the suffering.”

As we mourn Senator Kennedy’s passing in the weeks and months to come, he will be remembered for his role in a range of struggles for social justice, but it was his gargantuan efforts to improve health care for all Americans that perhaps made the most difference. As he wrote just before his death in Newsweek: Health care has been “the cause of my life.” The HIV/AIDS and gay communities have special reason to be thankful for his brave and enduring leadership in the fight against this epidemic.

I, for one, never met the senator. But five years ago, when I started gathering personal essays for a book to commemorate the epidemic’s 25th year, Senator Kennedy’s office was the first to say yes. “Good news, just got the go ahead from the senator,” wrote a staffer. In the months that followed, Kennedy penned a moving and powerful essay titled, “Fulfilling the Promise and Finding Common Ground—the Battle Against AIDS in This New Century.”

The Daily Beast's Complete Kennedy Coverage: Tributes, Photos, and VideosFor a variety of reasons, none having to do with him or the essay, the collection was never published. For five years now, it’s sat on my hard drive, collecting metaphoric dust, but losing none of its urgency or punch. With his death, it seems only fitting that I allow the senator some last words about the epidemic that killed half a million of our brothers and sisters, our parents and children, in this country alone.

“In 1987,” Senator Kennedy wrote, referencing the first-ever congressional hearing on AIDS, which he called in January of that year, “as the new chairman of the Senate Health Committee, I decided to make AIDS our top priority. Prevention was the key to slowing the epidemic and research was the key to ending it. But everywhere we looked, discrimination against people with AIDS was still rampant—in hospitals, workplaces, and neighborhoods across the country. On tours of affected areas, I was deeply moved by the sights and stories of the suffering.”

The senator’s affinity for the underserved and disenfranchised was, of course, legendary, and so it shouldn’t be surprising that while it took years for others to understand how stigma, discrimination, and lack of funding hampered prevention and treatment, the senator instinctively understood our plight.

“The stigma surrounding the disease was so great that few hospitals would treat patients with AIDS unless they had a private room,” he wrote. “I met a patient who waited 11 days in a hospital waiting room for treatment. By the 12th day, he was so sick he was finally sent to the emergency room. It was unethical and inhumane, and made the need to bring help to the nation’s urban areas even more urgent.”

I once met three brothers, all of them hemophiliacs infected with HIV/AIDS, who had met with Senator Kennedy soon after being run out of their Florida school and watching their home burn to the ground. One of the boys, Ricky Ray, then aged 10 (and now deceased along with his brothers), told me: “I was scared at the beginning when [our parents said people] were trying to kill us. Mom didn’t tell us until we were in Tampa at a friend’s house. Then she told us that Dad was going to get a gun, and when we asked her why, she said the community was wanting to kill us like Ryan White,” an Indiana boy with AIDS.

Ricky and his brothers attended a Senate hearing the year after their house was firebombed, at which Senator Kennedy reminded Americans of the crucial lesson: "This is not the children's fault. None of this is the children's fault."

Senator Kennedy continued this theme of protecting the powerless in his unpublished essay:

“Our efforts were dramatically enhanced by a powerful new spokesman for the issue—18-year-old Ryan White. Ryan had contracted AIDS from a blood transfusion and symbolized the senselessness of the disease. By standing up and speaking out about AIDS, Ryan showed the country the tragic effect that inaction by Congress would have on countless communities. Just days after Ryan was hospitalized in March 1990, our Senate committee unanimously approved the Comprehensive AIDS Resources Emergency Act (the CARE Act). Ryan died that April from complications of his illness, but his extraordinary legacy endures.”

Senator Kennedy has left us with an extraordinary legacy of his own. Just this past spring the American Foundation for AIDS Research (AmFar) gave him its highest award for “forceful advocacy in the Senate for people living with HIV/AIDS [which] helped invest federal research dollars to confront this crisis and created our existing system of care and treatment through enactment of the Ryan White CARE Act.”

It was because of these successes and because the senator seemed to have such deep reserves of hope that he predicted, long before his own diagnosis with brain cancer, “This new century may well be the century of the life sciences. Discoveries in the next 100 years can transform the world. A cure for Alzheimer’s will empty many of our nation’s nursing homes. A cure for cancer will save millions of lives. A cure for AIDS is also a miracle within our grasp, if we reach for it.”

In our last editing session, I asked Senator Kennedy to articulate the lessons of the epidemic, and he went straight to the core of the matter:

“Never let ideology trump science. This basic principle applies to all public-health efforts, but it often goes unheeded.”

“Never let a small set of disagreements stop progress. If we can’t reach consensus, we must move ahead for the greater good on what we can agree on. AIDS is not a red state or a blue state issue—it comes in many shades and colors and is too important not to work together on.”

“Deal with the core issues that make the unequal spread of AIDS, possible—especially bigotry, racism, and poverty.”

Today, I am mourning the loss of a great friend and ally in this fight—and fondly rereading a note the senator sent me after our AIDS essay project was complete: “Thanks again for letting us be a part of the book,” he wrote. Thank you, Senator Kennedy.