Dennis is Dead

I worked for Dennis de Leon at the Latino Commission on AIDS from 2006 until June of this year and could see that he was not in great health long before he entered the hospital in the summer and did not seem to be bouncing back. The Times had a generous obituary outlining Dennis’s unique contribution as one of the first Latinos in New York to go public with his HIV-positive status.

It doesn’t seem like a big deal now, but it took courage and dedication to leave behind a successful career as a lawyer and member of the city’s civil rights commission to take up the AIDS banner. Even nearly two decades later, Dennis commented that professional opportunities still dry up with depressing frequency for people who decide not to hide their struggle with HIV. As the virus thrives on secrecy, this ongoing environment of stigma and discrimination remains the principal barrier to getting sexually active people to have an HIV test.

That has real consequences. Nearly half of all new HIV transmissions in the U.S. originate among people who are unaware that they have the infection themselves, which is why the folks at the Centers for Disease Control (CDC) are so eager to turn HIV testing into a routine procedure. However, they haven’t yet come up with a good formula for making that happen, despite experiments like a huge, emergency room-based pilot project or New York’s ‘Bronx Knows’ campaign aimed at getting every sexually active adult in the borough to test for his or her HIV status.

Despite prevalence rates similar to those in Africa among big city gay populations, you hardly ever see a prevention poster or message in the clubs or bars any more, gay or straight. In any case, condom promotion is a nice idea, but it clearly isn’t enough for 50 reasons I won’t go into—any more than it solved straight teenagers’ pregnancy issues. Gay Americans have learned to live with HIV but haven’t a clue how to put a stop to it.

The nonprofits that grew up in the heyday of activism around AIDS don’t have the answer either. After seeing the insides of plenty of them on two continents, I have no problem in saying that despite their innovations and triumphs of the 1990s, they haven’t grappled successfully with the changing circumstances surrounding the HIV epidemic, especially on the prevention side. There, the programs are feeble and repetitive and with such a shrinking reach that they can’t begin to dent the 50,000-plus new annual infections registered in the U.S. year after year. I wish I knew what they should be doing instead.

Dennis never expected to live another 15 years after his public announcement, but he did. He saw the Commission, like so many AIDS organizations from that era, grow into a mélange of programs in which the leaders and staff had to invent themselves from year to year to keep up. He knew a lot and had a lot of history, and he suffered from the usual 501(c)(3) founder’s dilemma—how to turn the entity from an owner-operated Mom & Pop into a solid institution with a vision, a strategy, a research capacity, policy smarts and that spark of creativity that social movements sometimes have but social agencies rarely preserve.

I wish I knew the answer to that question, too.