After suffering from cardiomyopathy for more than three decades, 70- year old David Skand of Tampa found himself in a tough position--his heart had given out.
"My back was pretty much up against the wall," he said.
Skand's doctors at USF Health told him there might be a better option than surgery.
They recommended he join a clinical trial testing Neucardin, a genetically-engineered drug designed to treat chronic heart failure like his.
USF Health is one of 10 sites in the country for this study. Skand signed up.
"I really thought this would be a good opportunity to try something--and see if it would work out," said Skand, a veterinarian who tests racehorses for drugs.
Doctors told Skand he could continue to take his normal heart medication while participating in the trial.
He wasn't even concerned whether he was getting the drug or the sugar pill because he felt he was already receiving a huge benefit.
"Whether I was getting that or the placebo, it didn't matter much to me at that point, because you still have the advantage of getting all the attention from a complete medical staff or highly trained medical professionals," he said.
"You know they give you diagnostic procedures, cat scans, echocardiograms, and many, many, EKGs, all day long."
Dr. Richard Bookman at the University of Miami is chairman of the Florida Biomedical Research Council, which oversees grant programs in the state. He says Florida's participation rates for clinical trials are lower than the national average.
"I think the challenge we have faced in Florida is increasing patient participation in clinical trials."
The new USF program offers offers patients, caregivers, and healthcare professionals a referral service for clinical studies across the Tampa Bay region and in two to three years, all over Florida.
Dr. Phillip Marty, who's running the new program at USF Health, says it should make participating in clinical trials easier for rural and under-served patients.
"The idea of this is providing info to people who have interest in clinical trials and connect them with the trials that would be closest so they don't have to go to New York or Texas to receive that treatment," he said.
In the past, the trials were only offered to cancer patients. The USF database now offers trials for many diseases.
"We've got trials for Alzheimer's disease, we've got a fairly active asthma and allergy community, our psychiatry department is very active in these trials," Dr. Marty said,"so we have trials for depression and schizophrenia, anxiety disorders."Dr. Marty said. Dr.
While there is already a national database in place those seeking clinical trials, Dr. Bookman says, the USF Health system offers two major benefits over that program.
"It's a more complete listing of available trials plus this kind of in person, by telephone, bi-lingual, help to educate the patient about clinical trials."
The hope is this "hand-holding" will encourage more patients to participate in trials-- leading to more improvements in treatment-- and eventually cures.
Skand says the drug he's taking seems to be working so far. While, he initially experienced side effects such as nausea and muscle tremors, doctors were able to adjust his medication so that he no longer experiences side effects.
"No, no, no more side effects at all."
Now he's applied for another clinical trial-- studying the gene patterns of people with genetic diseases.
"I don't think anyone should be afraid to get into one."
He says the hope of success overwhelms the anxiety he feels when offering himself as an experiment.
Health News Florida, journalism for a healthy state, is a service of WUSF Public Media. Question? Comment? Contact Editor Carol Gentry at 813-974-9629 or by e-mail at cgentry@wusf.org.
