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Parkinson’s registry, new insulin bill approved by House Health Committee

CHARLESTON, W.Va. – The House Health and Human Resources Committee passed a pair of bills Thursday afternoon at the state Capitol.

House Bill 4276 would allow WVU to create a Parkinson’s Disease Registry and House Bill 4252 that would lower the cost of diabetic-related equipment and insulin.

George Manahan

George Manahan suffers from Parkinson’s and is the director of the Charleston Parkinson’s Support Group. He testified that researchers worldwide are hampered in their efforts because there is not a clear understanding of how many people have Parkinson’s. He said the registry will give researchers more data to better direct their efforts.

“The Michael J. Fox Foundation is now working with each individual state to try to set up this registry so they can feed the CDC this information that will be made available to researchers around the world,” Manahan testified. “In order to find a cure or better therapies.”

He said there are advancements being made in treatments, but there is no cure for brain disorder that causes shaking, stiffness, difficulty walking and maintaining balance.

“There’s a new drug out, and you put it under your tongue to dissolve, if you look at me I’m shaking, it would stop the shaking almost immediately,” Manahan said.

A disease registry provides a tool for clinicians to track clinical care and outcomes. Through the registry, treatments and outcomes would be available to researchers all over the world. The shared information can help researchers refine current treatment options or try new techniques to improve the quality of life for Parkinson’s disease sufferers.

“The dirty little secret is that there are 1 million people in country that have Parkinson’s, but we don’t know that,” Manahan said. “There’s no registry to tell you how many people in West Virginia have it because they go by averages.”

House Bill 4276 was passed out of the committee to the House with recommendation to pass.

In 2020, lawmakers passed House Bill 4553 that capped insulin costs at $100 and no equipment cost assistance. During that session, the bill passed the House with a $25 cap but the Senate changed it to $100. By the time the bill arrived at the House later in the session there wasn’t much time to fight the change and maintain hopes the bill would pass.

Barbara Fleischauer

House Bill 4252 proposes to cap the cost of a 30-day supply of insulin at $35 and $100 for devices, including blood testing kits for ketones. A ketones test can warn a person with diabetes of a high blood sugar condition that could trigger a medical emergency.

“It allows for life saving treatments using insulin pumps and continuous glucose monitors that really will enable people to live longer and healthier lives,” Monongalia County Delegate Barbara Evans-Fleischauer said.

Insulin pumps can cost up to $7,000 and glucose monitoring devices can cost up to $900.

House Bill 4252 was passed out of the committee to the House with recommendation to pass.

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