COLUMBUS, Ohio (AP) — If anyone in their circle of friends was going to make it, to somehow defy the death sentence that loomed over an HIV diagnosis back then, it would be Matt Taylor.
Keith Burkes believed that with all his heart. It almost makes sense to him still, 25 years after Taylor — brilliant chemistry major, popular floor manager at COSI, pioneering AIDS volunteer — succumbed to the disease he had helped others fight.
“I thought Matt would be here today,” Burkes said, smiling at the notion.
In this Wednesday, April 17, 2019 photo, Keith Burkes, who has been living with HIV for many years and is a Project Open Hand client, poses for a portrait in front of a banner honoring Matt Taylor that hangs at LifeCare Alliance, in Columbus, Ohio. More than 25 years ago, Taylor created Project Open Hand to help people living with HIV and AIDS meet their nutritional needs. The program is still going, but under the wing of a larger nonprofit, as is the case with some other early, small AIDS charities. (Fred Squillante/The Columbus Dispatch via AP)
Taylor’s mission instead became his legacy. Project OpenHand-Columbus, the charity he created to provide nutritional assistance to central Ohioans suffering from severe weight loss caused by AIDS, held on through the worst of the epidemic. The charity continues a quarter century later, in a different form, one of a relatively few grass-roots organizations remaining from the early days of local HIV advocacy.
“What has happened here, and places elsewhere in the country, is that it was not feasible to sustain 20 small, struggling, hand-to-mouth AIDS organizations,” said Bill Hardy, president and CEO of Columbus-based Equitas Health, one of the nation’s largest LGBT health-care organizations. “The needs of the community have changed.”
And so has the outlook for the approximately 24,000 Ohioans living with HIV. People who get treatment quickly and stick to a medication regimen can remain healthy, with undetectable levels of the virus and near-normal life spans.
“Life expectancy went from months in 1996 to decades in 2019,” Hardy said.
During the early 1990s, all Taylor could do was use nutrition to buy time. He modeled his Columbus charity after the Project OpenHand organizations that had started on the West and East coasts during the mid-1980s, traveling to San Francisco and New York to work in kitchens and deliver meals so that he could replicate the effort at home.
“At the time, wasting syndrome was very real,” Burkes said. “People were starving. And there was the discrimination part — if people knew, they were afraid to touch you. If you were in the hospital, they put your food outside the door. It was like Ebola.”
Burkes had been diagnosed with HIV, too. It was devastating news for the former Ohio State University student, who enjoyed a run of fame in the 1970s as the first African-American to perform the role of Brutus Buckeye.
In this Dec. 9, 1974 photo, Keith Burkes, the man inside Brutus Buckeye, pauses next to the head of the costume in Columbus, Ohio. Burkes, who has been living with HIV for many years, is a Project Open Hand client. More than 25 years ago, Matt Taylor created Project Open Hand to help people living with HIV and AIDS meet their nutritional needs. The program is still going, but under the wing of a larger nonprofit, as is the case with some other early, small AIDS charities. (Ken Chamberlain, Jr./The Columbus Dispatch via AP)
The virus that quickly took Taylor and so many other gay and bisexual men, however, didn’t seem to affect Burkes the same way. “I’m 65 now,” the Hilltop resident said. “And probably healthier now than I was then.”
The state counted 1,019 new diagnoses of HIV infection in 2017, according to the most-recent data from the Ohio Department of Health. Blacks accounted for about 45 percent of the new cases, which translates to a rate more than six times higher than that among whites. Women accounted for 19 percent of new cases.
Hardy said disparities in access to medications, care and awareness are thwarting some of the advances made with anti-retroviral therapy and prophylaxis medications. “HIV continues to follow the poor and the marginalized,” he said, including growing numbers of people who use needles to inject opioids.
The shift in HIV demographics is even more pronounced at Project OpenHand-Columbus, where 57 percent of those served by the program are a racial minority and 29 percent are female. Many, like Burkes, are older.
Burkes has stayed loyal to Project OpenHand not only as an advocate, but also as a client.
After several years of financial struggle, the program merged in 2004 with LifeCare Alliance, a large nonprofit group that operates the area Meals-on-Wheels program.
“About 90 percent of the Project OpenHand clients have an annual income of less than $20,000,” said Chuck Gehring, president and CEO of LifeCare Alliance. “We never used to pay for rent or utility shutoffs; we’ve done that now for a decade. It’s a need.”
Project OpenHand recently ceased its longtime food-pantry operations, which Gehring says were underused, in favor of services such as home-delivered meals, dietary counseling, diabetes screening and lunch at LifeCare’s cafe.
“We don’t want people to think we’re closing OpenHand, because that’s not the case,” Gehring said of the program, which serves about 600 people a year. “No one will be turned away. I want to stress that. We’re just changing a little bit.”
Project OpenHand offered vital support to some of the sickest people in the community for years, said Sean Hubert, director of the Ryan White Program at Columbus Public Health. But as conditions have become more chronic than critical, it makes sense for the program to look to broader health and social needs.
Although new infections remain more likely among younger people, the highest rate of Ohioans living with HIV occurs in the 50-to-54 age group.
“We have a lot of long-term survivors, and they’re becoming our seniors,” Hubert said. “They tell the story of what it was. And if you don’t take your medication, that’s what it still is.”
Matt Taylor’s parents, Jackson and Marge Taylor, now live in Colorado but still keep tabs on their son’s beloved charity.
In this Nov. 21, 2006 photo, Jackson Taylor, left, and Marge Taylor work in the pantry area stacking food at the Project OpenHand pantry in Columbus, Ohio. The organization helps feed people who have AIDS and HIV. Their son started this effort before he died. (Tim Revell/The Columbus Dispatch via AP)
They were by his side in the beginning, when Matt was feeding just five people, and they supported the project as it grew to provide love and good food to hundreds of people with AIDS. Dozens of Ohio State students volunteered; at one point, Project OpenHand even had a sous chef from Muirfield Village Golf Club.
The average client packed on 20 pounds.
“He wanted to do this because, in his lifetime, it was a never-ending thing,” said Jackson Taylor, 88. “If you had AIDS, you knew you were going to die.”
Matt, the middle of the three brothers, loved science and his job at COSI. He was the guy who brought kids up on stage to touch the electrostatic generator, laughing along with them as their hair stood on end.
His instinct, after learning that he had HIV, was to seek all available research. “He went to the Columbus library and demanded every bit of information to be had,” Jackson Taylor said.
The conclusions were heartbreaking. “One night he sat on my lap and said he wished he had 3 1/2 kids and a house on the North Side of Columbus,” Jackson Taylor said. “He knew it wouldn’t be long. And he knew there was nothing to do but accept it.”
His mom still cries easily when she thinks of all he could have accomplished. “He should have been a professor,” said Marge Taylor, 85.
Matt was 35 when he died at the Taylor home on Dec. 2, 1994 — the day after World AIDS Day. The next year, annual deaths from HIV/AIDS in Ohio would peak at more than 1,000.
“He and his parents gave so much,” Burkes said of his friend.
If Matt were alive today, Burkes believes he would be pushing for education, prevention and testing, especially among young people. Burkes has taken his own outreach efforts to prisons, bars — anywhere there are at-risk people who will listen.
“I’m still kicking,” he said. “If you don’t pass along what you’ve learned, it goes away.”
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Information from: The Columbus Dispatch, http://www.dispatch.com