Local man at forefront of hemophilia research

Tuesday, February 16, 2016
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George McCoy

CHAPEL HILL (WTVD) -- At the age of 68, George McCoy has been through more physical hardships than most. But, over the years he's refused to give up, fighting to overcome the obstacles life has thrown at him, going on to be a sort of medical pioneer in the field of treating hemophilia.

"I was born in 1947 and at that time there was no real understanding of hemophilia, there was no treatment. So, my childhood was full of ice bags and sitting with an ice bucket in front of me, putting my ankle in it, long nights of no sleep, and a lot of missed school, a lot of restricted activity," he recalled.

Hemophilia is a rare disorder where blood doesn't clot properly because it lacks sufficient blood-clotting proteins (otherwise known as clotting factors.) There are two types, Hemophilia A (accounting for roughly 80% of patients) and Hemophilia B (which represents approximately 20% of cases.) This genetic disease, which predominantly effects men, causes patients to bleed for much longer than a typical person following an injury. Smaller, superficial cuts aren't the primary concern. Instead, the greater concern is internal bleeding, which can damage organs, tissues, and joints. For McCoy, the lack of treatment available during his youth made him dependent on full leg braces, crutches, and even a wheelchair to get around.

"Once the blood would get into the joints in an untreated person with hemophilia, which is what I was, there was a huge swelling of the joint. The skin would become very tight, very hot, it was very painful, and the joint lost all movement. So, by the time the body recovered and cleaned all of that up, and reduced the swelling, you were left with joint damage," he described.

But, upon searching for answers to his ailments while in college, McCoy realized there might be doctors who could help him.

"In researching hemophilia, I saw footnote after footnote of 'UNC Chapel Hill, UNC Chapel Hill.' So, as soon as I was able after college I relocated here, deliberately to participate in research," he said.

Because this was in an age long before the internet and Google searches, McCoy had to find doctors the old-fashioned way, using a phone book. His persistence paid off, and he connected with staff at UNC, immediately volunteering to enroll in research efforts. The first benefit of this was that doctors addressed the orthopedic side effects of his hemophilia and got him walking again. And, for a time his hemophilia was successfully managed through infusions of clotting factors derived from plasma donations. Then, catastrophe struck the hemophilia community.

"It was realized in the early 80s that a clotting factor could transmit the HIV virus because clotting factors were made from pooled human plasma. It was a disaster, and 10,000 hemophilia patients in this country out of 25,000 got infected with HIV," explained Nigel Key, MD, PhD, the Director of UNC's Hemophilia and Thrombosis Center.

McCoy, unfortunately, was one of those who became infected with not only HIV but also Hepatitis-C. He says many of this friends from those days didn't make it. But he did, and despite the health scare, he didn't hesitate when UNC contacted him to see if he'd once again participate in their research.

"UNC called me and said, 'we have this new form of clotting factors, recombinant, that's genetically engineered, made in a laboratory with no human involvement. You'd be the first person to try this.' And I said yes. By that time, I was already HIV and hepatitis C infected. So, I felt it was good for me to take the gamble, what did I have to lose? And I had a great deal to gain, as did our whole hemophilia community," George shared.

And that gamble paid off. As the first person in the world to receive the man-made clotting factors back in 1987, he helped pave the way for what is now the current standard treatment. And now, he's once again on the frontlines of the latest advancement in treatment, currently taking the next generation of man-made clotting factors which allow patients to go longer between infusions.

"I have gone from three treatments a week to two treatments a week. I realize to the casual observer that's nothing, but to me it's 52 fewer vein punctures a year. Actually more, because as many years as I've been doing this I still miss the vein from time to time," he admitted.

Dr. Key calls these latest products a major breakthrough, especially for patients with Hemophilia B, who are able to now go from two injections a week to twice a month.

"There's never been a pipeline like there is now, and I think the ability of science and biotechnology to translate into meaningful protein therapies and gene therapies is really amazing these days," said Dr. Key. "We've had the promise of gene therapy for 15 years but it's becoming more of a reality, and UNC has been a leader in that."

In fact, there's a gene therapy building near Key's office where they actually make the vector for ongoing trials. Key explained this is exciting because it could be the key to finally finding a cure.

"Potentially it could be a one-time treatment for life, and I really think that's coming in the next, not two years, but the next decade," he said with confident optimism.

For McCoy, it's a possibility he's been waiting for his entire life.

"My personal goal is that, indeed, I will be able to live from the age of 1947, the dark ages, to the day when, in fact, we do have genetic control. And if I don't make it, I'm sure that someone is already alive today who will be able to expect that breakthrough, and I will be proud of the role that UNC and I have played in getting to that day," he said.

Meanwhile, McCoy says he's feeling the best he ever has, with his HIV and Hemophilia under control, and the Hepatitis C eradicated from his body (thanks again to medical advancements made at UNC.) As a result he's able to share his experiences to raise awareness of hemophilia, but also enjoys time spent traveling all over the world.

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