THUMBS UP : ‘We’re on a Roll,’ AIDS Activist Says of Vigil on Street
From his tent next to busy Santa Monica Boulevard, AIDS activist Wayne Karr, still exhausted from a nine-day hunger strike that he and a friend ended last week, strained to be heard above the din of heavy traffic.
“We’re on a roll,” he said, flashing a thumbs-up sign. “Our message is getting through.”
That message, a demand for widespread distribution of the antiviral drug DDI and other experimental treatment drugs--and dramatized by a street-side vigil that continued Wednesday--is aimed at the Food and Drug Administration.
The agency announced plans last week to appoint a group of government and private health professionals, including AIDS activists, to consider ways to speed the availability of such drugs.
But the way Karr and his fellow AIDS activists have chosen to deliver their message--by spending 14 days camped on a West Hollywood traffic island and vowing to stay longer if needed--has more than caught the eyes of FDA officials. It has also captured support from both nationwide and local sympathizers, many of whom have stopped by to offer food, money, sleeping bags or other supplies.
Karr, 35, a former fashion buyer, and Lou Lance, 51, a one-time fundamentalist minister, say the vigil they and about 20 other members of the Coalition for Compassion are staging will continue until there is a definite plan to distribute the drugs.
The pair, both of whom have been diagnosed as having acquired immune deficiency syndrome, attracted national attention with their hunger strike that ended last Thursday, the day of the agency’s announcement. Although FDA spokesman Brad Stone said the strike and vigil did not influence the agency’s decision, he said officials “were not unaware that the hunger strike was taking place.”
The men are threatening to renew their hunger strike next month unless the newly designated group comes up with a concrete plan for making DDI--short for its chemical name, dideoxyinosine--and other experimental drugs available to those who need them.
Besides the attention the vigil at Santa Monica and Crescent Heights boulevards has generated elsewhere--including sympathy vigils in New York and Washington--the protest has come to serve as a rallying point for West Hollywood residents.
“There’s a lot of admiration for what they’re doing,” said Peter Kallen, a restaurant owner who has kept the group supplied with ice for two weeks. “Too many people here have lost friends and loved ones to AIDS not to be moved by it.”
The group, at the invitation of West Hollywood officials, has occupied the street camp since Aug. 10, after 28 coalition members were arrested for trespassing when they tried to set up an encampment at the federal building in downtown Los Angeles.
The protesters were welcomed with open arms in West Hollywood, where an estimated 35% of the 37,000 residents are gay. “It’s been an amazing thing, and it goes beyond just the gay community,” Karr said.
“During the (hunger) strike, an elderly woman who said she used to be a nutritionist brought us a special drink each morning,” he said. “Another day, a man who said his daughter was hospitalized with AIDS walked up to us with a $100 donation. We’ve even had people open their homes for us to take showers.”
Organizers of the protest, who seem surprised by the support it has engendered, say privately that the original plan included only a round-the-clock vigil without a hunger strike.
“Some of them were concerned about what the ramifications might be for someone with AIDS to go on a hunger strike, with the possibility that one of us might die,” Lance said. “Wayne’s feeling was that this is a life-or-death issue that called for radical steps if we were going to be heard. We wanted to have a real impact.”
The hunger strike, and the vigil, were spurred by a new federal initiative to make experimental AIDS drugs available on a so-called “parallel track” even as they continue to be tested.
Researchers, regulators, doctors, patient advocates and DDI’s manufacturer, Bristol-Myers, have been meeting in Washington to work out details of a compassionate-use program to provide DDI to patients who become resistant to or cannot tolerate AZT, the only federally approved antiviral drug for AIDS.
Bristol-Myers has pledged to make the drug available next month to patients for whom the drug is considered critical.
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