Lorenzo Penn of New York City is 50 years old and HIV positive, and he came to the AIDS Conference in Washington, D.C., this week, ready to tell his story.
He knows he owes his life to the rabble-rousing protesters I met as a reporter in Washington more than 25 years ago.
I remember them as young, beautiful and angry. Looking back, I also see them as heroes. Though many of the ones I interviewed knew they were infected and might not live to benefit from their actions, they traveled to Washington from across the country to show their faces and make scientists and political leaders listen to what they had to say.
They fought successfully for the political will to fund the research that now keeps alive Penn and millions of other HIV-positive people worldwide.
A diagnosis of infection with HIV no longer has to lead to the outcomes described in terrible detail in a government report I covered for The San Francisco Chronicle in 1988, when only 10 percent of people diagnosed with AIDS were expected to live more than five years.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, told reporters this week that he and his colleagues have “a scientific basis for being optimistic.” Recent research shows that treatment can prevent transmission, and the government last week approved the use of Truvada, a combination of antiretrovirals sold in a single pill (for about $1,000 a month), to protect people who are at risk but not infected with the disease.
Yet Fauci and other scientific leaders at the conference acknowledge that biomedical solutions are not enough in battling the global epidemic. Research suggests that in the United States, 20 percent of the 1.2 million people who are infected with HIV don’t know they are. And a study published this week in the Journal of the American Medical Association reports that 70 percent of the 426,000 people on antiretrovirals in the United States have suppressed viral loads, which means that 30 percent are at risk of transmitting the disease and of developing drug resistance.
It’s clear that the challenge is to identify and get people into treatment early, but also to keep them there. Worldwide, behavior change is vital not only in preventing HIV, but in ensuring that people take their medication, and remain tied into the systems that can save their lives and move the world closer to eliminating the epidemic. And that is the new front line.
Penn says people will adhere to treatment. But they need to see it as part of a strategy that will help them transform their lives for the better.
Gay and African American, Penn was living in Omaha, Neb., when he was diagnosed in 1992, and he feared the prejudice he had seen chase Ryan White‘s family out of their community in Indiana in the 1980s. “I was scared to death,” he says. “And I thought I had five years to live.”
So, in 1994, he moved to San Francisco, where he was put on newly approved life-saving drugs. His life got better, but he began to take “drug holidays,” which affected his physical and emotional health. After two years in San Francisco, he moved to Los Angeles and from there to New York.
He arrived homeless and sick, and he had given up hope. He found it in a community-based group named Harlem United. Plugged into programs that provided him with food, medical care, mental health services and shelter, Penn went back to school and studied medical billing. He is now in a program at New York University that he hopes will lead to a career at the university.
Penn’s story says that hopelessness is the real disease, and he wants that message heard.
And in allowing me to identify him as HIV positive – though still frightened of the prejudice that led him to leave Omaha 20 years ago – Penn takes up the mantle of the fiery advocates whose spirits walk the halls of the Washington Convention Center this week.