Before she became ill, Ashleigh Pike was a vibrant young woman who delighted in teaching elementary school children.
Now she lives life from a wheelchair, with her mother providing her full-time care.
“On the outside, I look fine,” the former teacher said. But, “my quality of life has been greatly compromised.”
The young woman suffers from a form of dysautonomia, a malfunction of the autonomic nervous system. That system controls automatic functions of the body, such as heart rate, blood pressure, digestion, kidney function, temperature control, and dilation and constriction of the pupils, according to Dysautonomia International’s website.
Pike was one of several panelists at a roundtable discussion of health care issues, as seen from the patient’s perspective.
U.S. Rep. Gus Bilirakis hosted the session on Aug. 19 at The Bethany Center in Lutz to help inform his work as a member of the House Energy and Commerce Committee’s Healthcare subcommittee. Later in the week, Bilirakis hosted a second roundtable, focusing on health care issues from the point of view of providers.
The first 21st Century Cures Roundtable, “Patients and the Patient Perspective,” put a human face on the often complicated and frustrating experiences that ill people have in trying to find treatments and cures for their conditions.
Colleen Labbadia shared the heartbreaking story of her young son, who has been diagnosed with Duchenne muscular dystrophy, a progressive condition that is always fatal. Labbadia urged a greater degree of flexibility for clinical trials in the effort to find ways to treat and cure the condition.
“Each loss of function is like a little death,” Labbadia said. “Parents like myself, we’re willing to accept significant risk.”
Dr. Samantha Lindsey advocated for Alpha-1 patients, such as herself. Alpha-1 is the most common known genetic risk factor for emphysema, and also can lead to liver disease, according to the Alpha-1 Foundation’s website.
Anyone who has been diagnosed with chronic obstructive pulmonary disease should be tested for Alpha-1, the website recommends.
Early diagnosis can make a tremendous difference, Lindsey said.
“Even though I look healthy on the outside, my lungs are like the lungs of a 104-year-old,” she said.
Gretchen Church and her husband, Michael — who both suffer from Parkinson’s disease — were at the session to advocate for better medical treatment for people who have the conditions.
“I probably don’t look like I have Parkinson’s, but believe it, I do, ” said Gretchen Church, of the Parkinson’s Action Network.
The couple said that Bilirakis and his congressional colleagues should help people with Parkinson’s by making it possible for these patients to use telehealth services — a remote form of health care delivery.
Telehealth services would make life easier for Parkinson’s patients who often have trouble getting around, Church said. It also would reduce financial burdens.
One obstacle to telehealth are current state licensing requirements that require doctors to be licensed in the state to serve patients there, Michael Church said. The problem is that many people live in states where there are no doctors specializing in movement disorders.
“For the Parkinson’s community, telehealth has the potential to be powerful,” Gretchen Church said. It could help people live independently longer, she added.
Dr. Wayne Taylor, a leukemia survivor, said there’s room for improvement in the matches for clinical trials. Taylor, a physician from Hudson, underwent a clinical trial, and once he was in remission, he was able to undergo a double umbilical cord transplant.
In a double umbilical cord transplant, the blood-forming stem cells collected from the umbilical cord blood of two babies is used for blood stem cell transplantation. One umbilical cord would not provide sufficient stem cells for the transplant.
When it comes to clinical trials, Taylor believes more people could benefit from better matching.
Patricia Stanco, a regional care manager for the ALS Association’s Florida Chapter, posed some questions for Bilirakis and his congressional colleagues to consider:
“Is there a smarter way to do research? Is there a common-sense approach to access?”
She also wonders if changes can be made in Food and Drug Administration regulations.
“There are surely ways to get more shots on goal for research,” Stanco said.
Janice Starling, a kidney transplant recipient, was there on behalf of the American Association of Kidney Patients.
“If people in Congress would do more of what we’re doing right now, we’d get more help,” Starling observed.
She noted that Medicare often doesn’t cover treatments that are effective, or will cover them only for a specific period of time when more time might be necessary.
“What is going on? Why can’t we get the help we need?” Starling asked.
Dr. David Lubin, a recently retired physician from South Tampa, also offered some observations from the audience.
“Insurance companies and big pharma are in control of medicine,” Lubin said.
With the vast array of illnesses, Lubin said, it takes “almost Solomon-like” wisdom to know where to direct efforts and resources.
From a personal perspective, Bilirakis said he’s watched family members and friends suffer from rare conditions that have no cures.
“The right thing to do is to help our people, our patients,” Bilirakis said. “I want to take the politics out of this.”
Published August 27, 2014
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