Patients and providers offered insights into obstacles relating to the treatment of people living with Parkinson’s, Alzheimer’s and Amyotrophic lateral sclerosis during a recent roundtable hosted by U.S. Rep. Gus Bilirakis.
Bilirakis, who is a member of the Energy and Commerce subcommittee on Health, hosted a roundtable focusing on neurological conditions on May 6 at the Carrollwood Cultural Center.
Bilirakis asked panelists and members of the audience to talk about challenges facing patients and their families, and obstacles thwarting providers. He also asked those gathered to share information about clinical trials and breakthroughs.
Ron Hall, who has Alzheimer’s disease told Bilirakis, “probably the biggest thing is the unknown —trying to figure out what you’re going to do to keep your life normal as possible.”
The hard part, he said, is “just not knowing what’s coming your way.
“With all of these other diseases out there, you can say, ‘I’m going to fight it. I’m going to beat it.’ With Alzheimer’s, there’s no beating it.”
Hall’s wife, Diane, said “we’ve never been to a neurologist, just a geriatric doctor and had tests performed.
“Sometimes, we think, maybe we should go, and then we ask ourselves: ‘Do you really want to know how far along you are?’ ” she said.
Dr. Charles Brock, another panelist, told the couple: “I think visiting the neurologist is helpful. It’s empowering because that physician is likely to know there may be drug trials going on, there may be new treatments, there may be new supportive measures that would be helpful to you and at least give you the opportunity to make a decision about what you want, which gives you more control.”
Dr. Jessica Banko, associate institute director for the University of South Florida’s Byrd Alzheimer’s Institute, agreed with Brock.
“Having some of that knowledge of where in the journey you lie may open doors to additional measures, not always necessarily pharmacological,” Banko said. “There are caregiver interventions to minimize stress and burden, and improve quality of life; there are behavioral measures and other ways to get involved in, maybe in validating new diagnostic tools.”
Dr. Juan Sanchez-Ramos, who serves as the medical director of the Parkinson’s Research Foundation Center of Excellence at the Morsani College of Medicine, said “one of the big obstacles in moving forward in finding new treatments is the difficulties that we often encounter in the recruitment for clinical trials.
“People have a misconception about clinical trials. They’re worried, ‘Well, I might get the sugar pill.’ ‘I might get a placebo.’ Or, ‘I don’t want to be a guinea pig.’ ”
The physician said he always thought it would be easy to recruit patients for specific clinical studies, but he has learned that is not the case.
“I know, in my clinic, when I see a patient, I bring up the possibility of clinical studies and describe what’s available in Tampa and what’s available in other parts of the state, and what’s available in the United States,” he said.
Banko noted: “The truth is, the only access we have right now to new treatment measures for Alzheimer’s disease is through clinical trial participation.”
She added that the government hosts a website called ClinicalTrials.gov that lists anywhere from 20 to 60 trials, at any given time, that are enrolling for different kinds of treatment options for various stages of the disease.
Sanchez-Ramos said physicians are another source of information.
“Ask the physician if he or she is aware of any research going on involving new medications, new interventions, new surgical procedures for that specific condition,” he advised.
In the arena of Alzheimer’s disease, a huge frustration is the fact that even though amyloid imaging was a huge advancement, it is only available to patients through clinical trials, Banko said.
Dr. Rob Norman, who treats patients in long-term care facilities, expects the challenges to increase.
As Baby Boomers age, “we have what I call a silver tsunami going on.”
He said health care providers must rise to that challenge.
“We want to have, not just more treatments, but prevention and a vaccine. We shouldn’t settle for anything less than that.”
One caregiver in the audience urged Bilirakis to seek increased continuing education requirements for physicians and nurses, to improve the diagnosis and care of people who have neurological conditions.
It’s not just a lack of resources, said Diane Hall.
Some people who suffer from a neurological condition, such as Alzheimer’s, don’t want others to know about it.
“We can’t find a cure for it, if people don’t raise their hand and let everyone know there is such a need,” she said. “It’s going to be 10 to 20 times (as bad) with Baby Boomers coming up.
“Don’t be afraid, and don’t stay in a closet,” she urged. “It’s got to come out. We’ve got to find a way.”
Published May 13, 2015