COVINGTON, Ky. — After more than 35 years of living with HIV and AIDS, Carl Fox is looking for signs that a cure is in sight.
Fox is part of a federally funded TRAILBLAZER study that’s altering the white blood cells of patients to try to control the devastation of HIV without daily medication. He is allowing WCPO to chronicle the experience.
RELATED: After 35 years of surviving HIV, he’s helping to find a cure
In January 2020, Fox sat for four and a half hours while 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 got pumped back into the other arm.
On Dec. 7, he and his fiancé, Terry Bond, arrived at a Cincinnati Children’s Hospital Medical Center research center before sunrise for the next major step -- a 10-hour infusion of chemotherapy drugs that are part of the study.
Three days later, Fox spent four and a half hours at a follow-up appointment to have his white blood cells reinfused.
“This is a double-blind study. So I may have only gotten a placebo, and my cells may not have been altered, just simply taken out and put back. We won’t know,” Fox said. “I know that in the end – or at least I believe in the end – they will cure me through this process.”
Fox aches to know if he’s one of the study participants who got altered cells and hopes that his body has given him hints.
When he experienced nausea, headaches and hair loss from the chemo medication, he couldn’t help but feel excited.
“When my hair started falling out, it was like, 'Oooh, I got it!'” Fox said with a hearty laugh. “I know that sounds very strange. But, ooooh, my hair’s falling out! I must have got it! I don’t know if that’s how it works.”
Dr. Carl Fichtenbaum won’t say.
Fichtenbaum is a professor in the Division of Infectious Diseases in the Department of Internal Medicine at the University of Cincinnati College of Medicine. He’s also a principal investigator on the TRAILBLAZER study and has been Fox’s doctor for years.
“Having done research for almost 30 years now, I have a healthy respect for how people feel. But I also recognize that you can’t always tell what’s really going to happen,” he said. “(Carl) just has faith that I’m going to cure him. So I won’t change his mind on that topic.”
Why even try? Positive thinking has helped Fox persevere.
‘A positive force and spirit’
Optimism wasn’t easy in the early days.
Fox was only 27 when he contracted HIV in 1985. The doctor who gave him the news told him to get his affairs in order because he only had about two years left to live. He was terrified at first and went to live with his parents.
But after he woke up feeling fine day after day for six months, Fox told his doctor he was determined to live.
“They didn’t have computers at the time. I would go to the library. I would talk to people and try to figure out, what can I do? They say there’s no cure, there’s no hope, there’s nothing to do,” Fox said. “The only thing you had was the positive power of thought and visualization techniques and other things like that.”
Fox’s outlook has made a difference, Fichtenbaum said.
“I have known him a very long time, and I’ve known him when he’s been down. And I think it’s just really important to be a positive force and spirit,” he said of Fox. “I try to encourage and support my patients to have those positive feelings and to be as happy as you can. Let’s enjoy this moment even better than the last. And I think that’s what helps some people get through.”
Now Fox is trying to stay positive.
He’s eager to get vaccinated against COVID-19 so he can be around people again. Fichtenbaum is encouraging all the study’s participants to do that, as long as the shots are spaced far enough from the study’s procedures.
Fox – a well-known LGBTQ rights advocate who opened two bars in Northern Kentucky before he retired – cannot wait.
“I’m not used to this staying home,” he said. “I’m a very social person.”
Fox had to remain in strict isolation after the procedures in December that suppressed his immune system. His T-cell count plummeted afterward. T-cells, also known as CD4 cells, are a type of white blood cell that fights off diseases. A healthy count is between 500 and 1,600 T-cells per cubic millimeter of blood, according to HIV.gov.
“My T-cells are back in the normal range,” Fox said. “And my viral load has remained undetectable.”
He will continue to get periodic blood tests as part of the study over the next two years as he waits and hopes.
Fox is one of 30 participants in the TRAILBLAZER study, which is a collaboration between researchers at UC, Case Western Reserve University in Cleveland and the University of California-San Francisco. Only about two-thirds of the patients will have the genes in their blood cells modified. The others will serve as a control group and have their unchanged cells reinfused into their bodies.
“What we’re hoping is that the cells that we’ve changed will last, and last for the duration of the study for most of the participants. And we hope that it will decrease the amount of HIV that is within that individual, what we call the reservoir, so that when we measure individuals at the beginning and then two years later we will see a difference in the amount,” Fichtenbaum said.
“But, more importantly, that the amount in the people who had their cells changed, versus those who didn’t, will be different,” he added.
‘I think they’re on the right path’
The study’s procedures weren’t as unpleasant or debilitating as some of the other health problems Fox has experienced in the more than 24 years that he and Bond have been together, Bond said.
“If a little bit of hair loss is the worst we’re dealing with … that’s relatively not too bad,” Bond said. “There are a lot of very sexy bald men if it comes down to being bald. There are sexy bald women. I mean, it grows back. Or it doesn’t grow back. You’re still yourself.”
Bond and Fox are staying focused on the goal.
“Even if it doesn’t get an absolute cure out of this study, it’s well on the road,” Bond said. “I think they’re on the right path with this treatment.”
The treatment changes the parts of a patient’s white blood cells that HIV latches onto, Fichtenbaum said. If the altered cells can keep HIV and AIDS in check, the treatment could result in what he calls a “functional cure.”
“Which is essentially not having to have people take medication every day, yet still they would be protected from the ravages of HIV and AIDS and wouldn’t become sick from it,” Fichtenbaum said. “I’d love to have a legitimate cure, let alone functional, but where we can’t find any traces of HIV in their body. That’s clearly not what we’re hoping for in this study. That’s an unrealistic expectation.”
A functional cure would be a giant leap forward.
The medications that have kept Fox alive for all these years have taken a toll, both physically and financially.
“My medicines cost $130,000 a year,” Fox said. “The last house I bought was less than my yearly cost of medicines.”
The strong drugs that keep HIV and AIDS at bay also can have serious side effects. Fox said he wonders if his osteoporosis – and maybe a spine bleed he suffered several years ago – were caused by his AIDS medications. Long-term AIDS survivors also have a higher risk for heart disease.
“That’s the thing. The meds have saved our lives, but there has been a tremendous cost to them,” he said. “That’s the biggest thing out of this, that people will no longer have to risk their health to try and stay healthy.”
Fichtenbaum said he believes science will get there.
“Even if these experiments don’t work out the way we want, the lessons of what we’ve learned will help us know that we have to find a different pathway to reach the summit,” he said. “And it is really as important about how you make the climb to the summit and how you treat people on the way as it is to reaching the summit.”
For his climb, Fox is packing plenty of positivity.
“I think maybe the best thing I can do is just assume that I got it and tell my body to get to work, and we’ll see what happens, you know?” he said. “I still believe they’ll cure me. That’s the part I still believe in.”
WCPO 9 will be chronicling Fox’s experience during his participation in the TRAILBLAZER study. This is the second installment. The first installment is available here.
More information about the study is available online.
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.
