by William Waybourn

By the late 1980s, Dallas was an “AIDS hot spot” with over 2,000 HIV-related cases, but it still had no clinical trials of experimental medicines. Anyone participating in a trial, many involving “compassionate use” protocols of untested drugs, were conducted at the NIH, making it necessary for Dallas-area AIDS patients to travel to Washington DC to enroll in trials relating to treatment of HIV (the “human immunodeficiency virus”).

On June 24, 1983, the Dallas Gay Alliance (“DGA”) formed the Foundation for Human Understanding (today’s Resource Center Dallas), and, in 1985, created the AIDS Resource Center, which soon began pushing Parkland Hospital (the tax-supported public hospital of Dallas County) and the University of Texas Southwestern Medical School to apply for experimental drug trials … to no avail. At the time, doctors on the west coast discovered that aerosolizing the drug pentamidine greatly reduced the number of deaths from pneumocystis carinii pneumonia (“PCP”), the deadly opportunistic infection of the lungs. Frustrated by Parkland’s intransigence, DGA created its own “guerilla clinic” and bought machines to deliver the needed pentamidine treatments. Dr. Robert Hulse wrote the prescriptions, and registered nurse Penny Krispin delivered the treatments with a cost compassionately based on each individual’s ability to pay.

Because Parkland limited these preventative treatments, our small operation was soon overwhelmed. Other doctors and nurses came to the DGA’s office on Cedar Springs to volunteer in the program, called “Guerillas In the Mist,” a twist on the popular 1988 movie “Gorillas In the Mist” with actress Sigourney Weaver. Thus in 1988 the first public AIDS “clinic” in Dallas was born. It was later renamed for DGA leaders Bill Nelson and Terry Tebedo as the Nelson-Tebedo AIDS Clinic for Clinical Research.

Parkland’s issues with HIV patients went deeper than we at first realized, as patients were dying while on waiting lists for readily available treatment, medications and beds. Moreover, Parkland had ceased rotating doctors through its “AIDS clinic,” leaving but one overwhelmed doctor for scores of patients. The death of the patients while on a waiting list formed the basis for the DGA’s lawsuit against Parkland filed on August 30, 1988. Dallas Judge John Marshall’s ruling from the bench ordered Parkland to change its policies.

While the lawsuit accomplished more and better treatment for struggling AIDS patients, Dallas remained without clinical trials. HIV+ individuals were trying bogus treatments on their own through any means possible. Untested drugs were flown in from other countries, juice extracted from the aloe vera plant was touted as a cure, and others tried formulations of apricot pits. Some of these drugs presented side effects that were worse than the cure, although the result was the same: nothing worked.

While the epidemic was mainly concentrated in New York and California, Dallas was struggling with its own growing caseload. The governmental response to AIDS in Texas (and Dallas) was one of benign neglect and the city, county and state ranked at the very low end of spending, so the burden fell on organizations such as ours. I was quoted in the New York Times calling out Dallas, with over 2,000 cases and growing, as the “Calcutta of the AIDS epidemic.”

That quote and the lawsuit combined to marginalize the DGA and its leadership specifically. In essence, we had “bit the hand that fed” AIDS patients, and we became persona non grata among other providers and agencies, including one that the DGA depended on for funding its food bank.

I learned of an invitation-only luncheon for wealthy and prominent society women to be held at the Crescent Court Hotel with special guests from AmfAR (American Foundation for AIDS Research) Dr. Mathilde Krim and actress Elizabeth Taylor. The purpose of the event was to educate these women about safe sex and how AIDS was transmitted, even though the luncheon’s participants were among the lowest risk groups in the country.

With the Parkland case now on the back burner (Parkland had petitioned to move the case to federal court, but had complied with Judge Marshall’s order), and as president of the DGA, I asked if I could come to the event to meet with Dr. Krim. Not only was my request refused, but I was told that I would be arrested for trespassing. Indeed I later learned that my picture had been circulated among the security staff for the event. Rather than risk further confrontation, I asked the Dallas Times Herald Society Editor Ron Boyd, an invitee, if he would deliver a hand-written note to Dr. Krim.

In the note, I thanked Dr. Krim, one of the world’s leading authorities on AIDS, for coming to Dallas, but respectfully asked her to consider coming back to Dallas to directly address questions from AIDS patients.

Within hours Dr. Krim called from DFW Airport where she was about to board her flight back to New York. With her unmistakable German accent, she said she would be delighted to come back and for me to call Sally Morrison of AmfAR to set a date. Three weeks later, Dr. Krim and Ms. Morrison came and spoke to an overflowing crowd of HIV+ individuals. The sanctuary of the Metropolitan Community Church (“MCC”) was so packed that it was standing room only. With so many people, the heat was oppressive, but Dr. Krim stood for several hours answering every question about treatments, research and ongoing trials. More importantly, she delivered a message of hope.

Before Dr. Krim left I privately reminded her that Dallas still had no experimental or clinical trials. “Well, we have to change that,” she said.

A few days later, I received a call from AmfAR’s senior projects director Paul Corser and Terry Beirn, whose job at AmfAR was to push legislation to fund clinical trials. The two were calling at Dr. Krim’s behest and wanted to set up a meeting in Dallas to see our facility and discuss the possibilities of clinical trials in Dallas.

The DGA board meeting with Corser and Beirn, was both illuminating and hopeful, except they made it clear that opening a clinic would not be easy, and opening a clinic that could conduct research trials would be even harder. Regardless, the DGA’s board voted unanimously to make an application.

Over the next few months, Corser, Beirn, and others at AmfAR had endless phone conferences with various DGA members, including Jeffrey Campbell, the DGA’s treasurer, on how program funds would be disbursed and accounted for. It soon became very clear that we had taken on a very difficult mission. As a small organization beset by all of the problems associated with clinical service delivery, we also operated a food bank, a community center, a youth group, and a financial assistance fund. Money was scarce, as we received nothing from the government.

The budget Corser and Beirn recommended to Campbell was over $300,000, an impossible amount. Adding a clinic to the mix proved to be a lot harder than we anticipated, but with encouragement from Corser and Beirn, Campbell managed to get all the paperwork in order with a bare bones budget of $200,000. Another requirement was that we hire a doctor and nurse to manage the trials. We could barely afford to pay the rent, so I told Dr. Krim that hiring a doctor and a nurse would present insurmountable obstacles. Dr. Krim said to go ahead and find the doctor and nurse, that funding from the pharmaceutical companies (wanting the results from the trials) and enrolled patients with insurance could help pay their salaries.

Center: William Waybourn and clinic fundraiser Joanna Windom. Background left: John Thomas is interviewed by reporter Sherry Jacobsen. Background right: Dr. Daniel Barbaro (hands in pockets) speaking with Dr. Randy Segal, participating psychiatrist.

Corser also told us we would have to empanel an “institutional or scientific review board” that would in effect administer the trials – our lawsuit against Parkland had complicated our relationship with the few doctors treating AIDS patients in Dallas, so I wasn’t sure how they would react. We didn’t want to be seen as taking business away from their practices. Ironically, the person most suited for the job was Dr. Daniel Barbaro, the former head of the AIDS unit at Parkland who had testified on our behalf in the Parkland lawsuit, probably costing him his job. I didn’t know how he would react to yet another request to help us. I called Dr. Barbaro and he readily agreed to serve as chair of the scientific review board and as its principal investigator, at least until we had a doctor on board. Realizing the impact that local clinical trials could have on their patients, Dallas doctors Brady Allen, Robert Fine, Alan Hamill, Kevin Murphy, Christopher McNulty, Stephen Nightingale, Randy Segal and others came aboard. In addition, another 30 physicians from the area agreed to volunteer their time and resources to create a patchwork or network of cooperative physicians.

With everything finally in place almost a year later, Dr. Krim and AmfAR announced a grant of $110,000 to the Nelson-Tebedo Community Clinic. The grant included $25,000 from the local chapter of the Design Industries Foundation Fighting AIDS (“DIFFA”) from a recent fundraiser.

NELSON-TEBEDO AIDS CLINIC FOR CLINICAL RESEARCH :: Dallas, Texas

Ken Green, M.D., and Gloria Goodwin, R.N., were hired in May 1990 to staff the clinic and our first clinical trial was soon underway, comparing azidothymidine (“AZT”) to a combination of AZT and Acyclovir. Within a few months, six other clinical trials involving experimental drugs like Ansamycin, Ampligen, Interferon, Erythropoetin and Pyrimethamine were started; other studies in the pipeline were “total parenteral nutrition” (“TPN”) nutritional supplements, oral interferon, gamma globulin and treatments for mycobacterium avium-intracellulare (“MAI”). The clinic also conducted confidential HIV testing and education. HIV+ patients wrestling with other medical issues were also seen by the volunteer doctors, thereby no longer having to wait in long lines at Parkland or wait days to get prescriptions filled.

Initially, the clinic served only Dallas and Fort Worth, but because so many others were in need, the geographical footprint was enlarged to include the four states surrounding Texas, with satellite trials in Amarillo, Tyler, Longview, Texarkana, Lubbock, Waco, Wichita Falls, Shreveport, Oklahoma City, Tulsa and Kansas City. Any area with physicians who agreed to abide by the protocols was included in our ever-expanding mission.

Terry Beirn meeting with President Bush in 1990 regarding the Ryan White Act.

Terry Tebedo, who died in 1988, never knew that the clinic would bear his name. Bill Nelson, upon being told about the clinic being named for him and Terry said, “I hope the board doesn’t think I’m going to accommodate them by dying.”

Unfortunately, Bill died in 1990, only months before the clinic’s first trials were started.

In subsequent years, Dr. Krim made visits to the Clinic, clearly proud of what she had helped start, as Dallas was just one of 12 such research clinics under AmfAR’s national network. A crusader until the end, Dr. Krim raised funds and international awareness of an epidemic that killed more than 39 million people worldwide. She died in 2018 at age 91.

Sadly, neither Terry Beirn nor Paul Corser survived the AIDs epidemic. Beirn died in 1991 and Corser died in 1999. Elizabeth Taylor gave Corser’s eulogy.

But legacies of those who put themselves on the front lines in times of crisis sometimes live on in following generations. Today the son of Paul Corser and Sally Morrison, Toby Corser, is a volunteer paramedic on the front lines of another epidemic, Covid-19, in New York. Like father, like son.