British man flies to Richmond every two weeks for ALS treatment
RICHMOND, VA (WWBT) - A man from England flies more than 3,000 miles every two weeks to Richmond hoping a clinical trial can help him live longer as he battles amyotrophic lateral sclerosis disease (ALS).
Adam Ball, 31, of Manchester, England, is the only international patient taking part in the trial at VCU Medical Center as researchers try to find a cure for Lou Gehrig's Disease.
"Ultimately all we're looking for is time," Ball said.
Ball was diagnosed in October with ALS, and for the past three months Ball has taken part in the clinical trial at VCU.
It's required him to take a pill a few times every day, as part of the first phase.
"We don't have a cure for ALS," said Dr. Scott Vota, Medical Director for the ALS Care Center at VCU Health System. "So, participating and looking from a research standpoint of how we can slow the disease down, and ultimately find a cure is extremely important for these patients."
Ball and his doctors hope findings from this trial will slow down the progression of the disease.
"[We hope it will] stabilize some of that muscle function," Vota said. "Not only from muscle strength in his arms and legs, but some of his breathing and respiratory support."
ALS is a disease that attacks and kills the nerve cells that control voluntary muscles. Those nerves then lose the ability to activate specific muscles, which causes them to become weak and leads to paralysis.
Preliminary research shows the drug, Radicava, used in the trial, has been shown to slow the decline of physical function by 33-percent.
In 2017 the US Food and Drug Administration approved Radicava, making it the first new ALS-related drug to be available in the U.S. more than 20 years.
While Ball's appointments are every two weeks, he will soon only have to come once a month when he moves into another phase of the trial.
But because this is a clinical trial, he doesn't know whether he's getting the medication or a placebo.
"We don't know if he gets the medication or if he gets the placebo," Vota said. "A certain percentage of the patients have to get a placebo, so Adam does not know and I don't know if he's gotten the medication or placebo."
Despite that possibility, Ball remains positive.
"It means a great deal to me," he said. "The doctors are very excited to see me at VCU and have been more than accommodating."
It also helps that Ball has family in the area, and his wife and kids have traveled with him to appointments in the past.
"They love it because they get to see family based here," Ball said. "They get to see the Flying Squirrels and went to the Outerbanks."
If all goes according to plan, the medication could give him extra time.
"It's provided him hope," Vota said. "It has provided him motivation and whether this medicine works, just seeing the excitement for him and his family in regards to there may be something that can help him spend more time with his family is really positive."
The flights every two week for treatment aren't cheap. Ball has dipped into his life savings to afford these flights, but thanks to the Harper's Hope Foundation the equipment he needs has been taken care of.
"Because walking is getting a little more difficult, we're giving him a transport chair (wheelchair) that he's going to be able to use," Vota said.
Ball also has support from friends and even strangers overseas.
"I have a Just Giving page, colleagues have run a 10K run, I've had others do a Tough Mudder... and I'm more than grateful," he said.
"The fact that we're able to help Adam with this clinical trial, but to help with his medical care as well means a lot to our staff," Vota said. "It means a lot to his family, and that makes us feel that what we're doing is worth it."
Ball usually arrives a day or two before his treatment, and then travels back to Manchester the following day.
According to VCU Health System, only one drug, called Riluzole, is currently licensed in the UK.
Currently, VCU Health treats more than 150 ALS patients, however Ball is one of six patients enrolled in the clinical trial at the medical center.
Approximately 6,000 people in the U.S. are diagnosed with ALS every year, two per 100,000 people.
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