COVINGTON, Ky. — Back when HIV was the frightening, new virus killing people, Carl Fox started making a list so he would never forget the names of friends who died.
“In the '80s, it was awful,” Fox said. “At the peak, I was attending three funerals a week. I remember that. That’s when I had my list because I didn’t want to forget their names. All my friends.”
Fox thought maybe his list would reach 40 or 50. By 1994, there were 204 names on the list, and Fox had to stop.
“I knew that if I kept doing it, it was going to kill me. So I just tore up the list,” he said. “I wish I still had it. But I decided I would never forget their names.”
When Fox found out he was HIV positive in 1985, his doctor told him he had about two years to live and to put his affairs in order. He was terrified at first and went to stay with his parents. But day after day, he woke up feeling fine. After six months, he decided he was going to live.
“I went in and saw my regular doctor,” Fox said. “I remember just looking at her and said, ‘I’ve decided I’m not going to die from this disease, and you can’t make me.’”
Now, 35 years and too many funerals later, Fox is part of a federally funded study that aims to find a cure. He is allowing WCPO 9 to chronicle the experience.
“I was in my 20s when this all started,” he said. “If my blessings continue, which I hope they do, they’re going to cure me of this in my 60s. To me, that’s a miracle. And I don’t even consider myself a religious man.”
In the 1980s and early 1990s, contracting HIV was practically a death sentence. Nothing seemed to stop the virus from attacking a patient’s immune system and progressing into AIDS.
The United States had 50,280 people diagnosed with AIDS between 1981 and 1987, and 47,993 of them – or 95.5% – died, according the Centers for Disease Control and Prevention.
The number of people diagnosed with AIDS peaked in the early 1990s and then declined, according to CDC data, but not before 340,260 more people died between 1988 and 1995.
The first name on Fox’s list was Steven, whose dying wish was to see his mother one last time. He told Fox it was impossible, though.
“She literally told me I was dead in her eyes the day I told her I was gay,” Fox said Steven told him.
Fox couldn’t believe it and called his friend’s mother to ask her to visit. But Steven was right.
He took his last breath about three days after his mother hung up the phone on Fox, saying her son was dead already.
‘The last old queen in the room’
That’s one of many sad memories Fox has from those days.
The friends who died always seemed to be the funniest and most outgoing people.
“Robbie. He's probably not ready for prime time,” he said, then laughed. “He was a good man, believe that. Absolutely a good man. He just liked to have fun. But then, that’s how you got it, right?”
Fox’s most painful memories revolve around his late partner, who died in 1992 when he was just 44.
Greg Landrum was a brilliant man who designed computer programs to automate factories and created his own software for his computer because he didn’t like Microsoft Word, Fox said. He refused to get tested for HIV and had been sick for months before he developed a 105-degree fever. Fox rushed him to the hospital.
Landrum had insisted it was a sinus infection. He was diagnosed with pneumocystis pneumonia and AIDS in 1990 and ended up hospitalized for 60 days.
Landrum went back to work to keep his health insurance, telling his employer and co-workers he had a bad heart, Fox said. He didn’t dare tell them the truth.
Some nights Landrum came home crying, telling Fox it was because of “those idiots and their fag jokes.”
“How does a fag spell relief? N-O-A-I-D-S,” Fox said. “That’s the first fag and AIDS joke I ever heard. ‘How does a faggot spell relief? N-O AIDS.’ No AIDS instead of Rolaids. Isn’t that something?”
Fox and Landrum got together in 1985 after Fox knew he was HIV positive. They had made plans assuming Fox would die first even though he was about 10 years younger.
Landrum died two years after his diagnosis, just 18 days after the couple’s seventh anniversary. Fox was his caregiver at the end, watching him decline physically and mentally to the point where Landrum couldn’t feed himself and couldn’t remember that his own mother was dead.
As devastated as he was, Fox didn’t have time to dwell on his loss. He had to run Rosie’s Tavern, the Covington bar that he and Landrum had launched together.
He found strength in his day-to-day obligations. And in the depths of his grief, Fox said he told his doctor he had a new reason to live.
“I’d be the last old queen in the room,” he told her. “And when they tried to change the history, I’d raise my hand and say, ‘No. This is how it happened – the good and the bad.'”
Fox’s older sister, Mary Fox, said the whole family was devastated when Landrum died.
“We just loved Greg. It was so incredibly sad,” she said. “I think that’s when it really started to hit home for us who weren’t in that community how real it was.”
Still, Mary Fox said, she’s not surprised her younger brother has survived.
“The Foxes are like cockroaches,” she said with a laugh. “You can’t kill us.”
“The guy’s a medical miracle,” added Paul Fox, who confessed to being “pleasantly shocked” that his younger brother is still alive. (There are seven Fox siblings. Carl Fox was the fifth child born to his Irish mother and German father.)
“He will eat anything fried,” Paul Fox said of his brother. “Anything. Fried possum, fried Snickers bar, fried anything. If it’s fried twice, it’s even better.”
Yet somehow Carl Fox doesn’t have cholesterol problems, his brother said.
“He may be the cure for everything out there,” Paul Fox joked. “Just suck him dry of blood and cure the world of everything.”
‘I’ve had my hopes up for 30 years’
That’s not how the cure study will work, of course, although Fox’s blood will play an important part in it.
The TRAILBLAZER study, as it’s called, aims to change the parts of a patient’s white blood cells that HIV latches onto, said Dr. Carl Fichtenbaum, a professor in the Division of Infectious Diseases in the Department of Internal Medicine at the University of Cincinnati College of Medicine.
Fichtenbaum is a principal investigator on the study and has been Fox’s doctor for years.
“The idea behind this study that we’re doing is to take a person’s cells from their white blood cells that harbor that receptor, take it in the laboratory, remove the receptor through genetic engineering and then infuse those cells back into the person,” he said.
“Our hope in the future is that perhaps if we were to do this often enough, and change enough cells in the body, that people who have HIV may be able to control the HIV, even without any medication,” Fichtenbaum said. “And it may be the first steps or ideas to really trying to cure people.”
Fox, now 62, is one of 30 patients in the study, which is a collaboration between researchers at UC, Case Western Reserve University in Cleveland and the University of California-San Francisco. He’s one of more than 600 patients at UC Health who have been living with HIV for decades, Fichtenbaum said.
“We’re very lucky to have people like Carl Fox who are willing to do our studies and willing to help us learn,” Fichtenbaum said. “They’ve really been our partners all along. We can’t thank them enough.”
Fox’s participation in the study began in January. For four and a half hours, he sat while his blood passed from a large needle in one arm, through a machine that removed the parts of his white blood cells needed for the study. What was left then got pumped back into the other arm.
“I’m going to call it blood stripping,” Fox said of the process, because it stripped his blood of what was needed for the cure study. “It wasn’t awful. It wasn’t fun.”
He had some additional procedures a few weeks later, including a biopsy of several of his lymph nodes. The biopsies were not required by the study, but Fox volunteered for the procedures to provide researchers with additional information about how HIV hides in those tissues.
Fox was supposed to go to Cincinnati Children’s Hospital Medical Center in April for a 10-hour infusion of chemo medication one day, followed by a four-and-a-half-hour procedure the next day where the blood cells removed from his body would be infused back into him.
But the COVID-19 pandemic brought delay after delay. Now he’s scheduled to get the 10-hour infusion of medication on Dec. 7 and get his blood cells back Dec. 10.
Only about two-thirds of the patients in the study will have the genes in their blood cells modified. The others will serve as a control group and will have their unchanged cells infused back into their bodies.
That’s one of the scary aspects of the study, Fox said.
“I don’t know, and my doctor doesn’t know, if I’m getting the real stuff or dummy treatments,” Fox said. “So the four and a half hours of blood stripping, they may have stripped my cells, sent them up to Cleveland, nothing is done to them and they come back. I may go through a 10-hour infusion of chemo drugs that are just sugar pills. I may go through a four-and-a-half-hour infusion of cells same as when they left.”
But that’s not the scariest part.
“Honestly, the scariest part is to go through it all and it didn’t work,” he said. “I know it’s dangerous to get my hopes up. But I’ve had my hopes up for 30 years. It’d be kind of hard to dash them now.”
Still, Fox said he considers himself a practical man.
“Common sense says there’s a possibility that this will not work. That’s part of a study,” he said. “A real possibility that it could make me sicker. But I don’t think so.”
Fox’s fiancé, Terry Bond, doesn’t think so either.
‘Why have I been the one to survive?’
Bond has stuck with Fox through desperate times during the more than 24 years they have been together.
He was there when Fox developed AIDS more than 20 years ago.
Regular blood tests to check Fox’s immune system showed his T-cell count was dropping. T-cells are a type of white blood cell that fights off diseases. A healthy T-cell count is between 500 and 1,600 T-cells per cubic millimeter of blood, according to HIV.gov.
Fox’s T-cell count had fallen to 250, he said, and was still dropping. Bond helped him decide in 1998 to take the drugs that saved Fox’s life.
It took some deliberation. Fox had started and stopped taking medication twice -- years earlier -- when the drugs had made him feel terrible. He has heard many times over the years that avoiding those early, experimental drugs helped him survive.
He and Bond researched how much the medications had improved, and Fox became convinced just in time.
“My T-cells stabilized at four,” Fox said. “I named them after an old movie.”
He called them “Bob & Carol & Ted & Alice,” after the 1969 movie of the same name, and the medication helped his T-cell count return to normal levels over time.
Bond also was at Fox’s side when Fox participated in a clinical trial that discovered a cure for hepatitis C – and cured Fox of that virus, which was killing him back in 2005.
And in 2015, Bond saved Fox when Bond came home early from work at the Crazy Fox Saloon, the Newport bar that he and Fox opened in 1999 the year after Fox sold Rosie’s.
Fox had been watching a Cincinnati Bengals game on TV when he started to feel sick. He collapsed in the bathroom, where Bond found him, and stayed conscious only long enough to say he had been sick and thought he was going to be sick again.
When Fox woke up in the hospital, his vision was blurred by blood. He was paralyzed and couldn’t speak. Doctors told him he had suffered a brain bleed and nearly died.
He had to learn to walk and talk all over again, and Bond was there for him.
“Terry is just, he’s an angel,” Mary Fox said.
An angel Fox tried to chase away.
“Carl, even within the first month or two of our relationship, kind of got to a point where he was like, ‘You know what – you should run. You should just go in the other direction,” said Bond, who is eight and a half years younger than Fox and is HIV negative. “And I was like, ‘No. You know, look, we know what this is. We know how to keep it from spreading.’”
Bond said he’s proud that Fox volunteered for the study and sees it as a way for Fox to help the fight against HIV and improve the lives of future generations.
Fox said he sees it that way, too.
He also feels an obligation to Landrum and Steven and all the friends he has lost.
The risks associated with the study are low. But Fox has considered, during moments of worry and contemplation, that this might be the thing that kills him after all these years of sidestepping death.
“I’ve wondered, why have I been the one to survive,” he said. “In a strange sense, and I hope I don’t sound immodest, if the worst happens, then that was my purpose.”
If Fox’s mother was right, though, he has nothing to worry about.
“My mother would say, ‘Oh, honey, only the good die young,’” Fox said with a hearty laugh. “’The truly evil are going to live forever. You’ll be around a while.’”
WCPO 9 will be chronicling Fox’s experience during his participation in the TRAILBLAZER study. This is the first installment. More information about the study is available online.
The public is invited to attend a virtual event commemorating World AIDS Day, presented by a collaboration of Northern Kentucky and Greater Cincinnati organizations. The event will be held starting at Dec. 1, 2020, and is accessible via Zoom through this link. The Meeting ID is 918 0857 7300. The passcode is 726943.
Lucy May writes about the people, places and issues that define our region – to celebrate what makes the Tri-State great and shine a spotlight on issues we need to address. To reach Lucy, email lucy.may@wcpo.com. Follow her on Twitter @LucyMayCincy.