Lobbying Her State Representatives To Deliver Life Saving Medicines

Kate Across America finds Debbie Healy of Pennsylvania; an advocate who gives us a strong example of the value of lobbying state representatives.

Debbie Healy is an advocate and a mom. She lobbied her state representatives to get a law amended in Pennsylvania. This amendment allows pharmacists to provide 30-day supplies of life-saving medications on an emergency basis. Here’s how that happened.

WHY DEBBIE? WHY NOW?

For Debbie, she did this to protect people with diabetes; to ensure that, in any emergency, they can get access to insulin. The previous law abandoned diabetics-in-crisis who, through no fault of their own, found themselves out of insulin.

Debbie’s younger son has Type 1 Diabetes.

WHY IS LACK OF INSULIN DANGEROUS?

Going without insulin for a diabetic can be deadly. A sudden lack of insulin can cause the life-threatening condition of Diabetic Ketoacidosis (DKA).

“Symptoms (of DKA) include sunken eyes, rapid breathing, headache, muscle aches, severe dehydration, weak peripheral pulses, nausea, stomach pain and cramping, vomiting, semi or unconsciousness, cerebral edema, coma and death. DKA is a horrendously painful way to die.” – Diabetesvoice.org

SHOULDN’T A SEVENTY-TWO HOUR SUPPLY BE ENOUGH?

People with Type 1 diabetes require one or more vials of rapid-acting insulin per month for use at mealtime and snacks. They also require long lasting insulin (also called basal insulin). Basal insulin and the insulin taken at mealtime are different. It is used to control blood sugar levels between meals and overnight. Basal insulin is prescribed on a monthly basis, and once an insulin vial is opened, it must be used within 28 days. After that time, it has expired. Even if a pharmacist drew up a 72-hour supply, the rest of the 30-day vial would be wasted.

Pharmacists, unable to dispense a partial vial of insulin, could therefore dispense no insulin. You got thirty days, or you got nothing. Like Kevin.

THE TRAGEDY OF KEVIN HOUDESHELL

As people in the diabetes community are aware, a tragedy occurred in Ohio involving a 36-year-old man named Kevin Houdeshell. Kevin had diabetes and his insulin prescription had expired.

the parents of Kevid Houdeshell on CNN

On December 31, 2013, Kevin tried to get a refill for his insulin prescription. But the pharmacist could not reach Kevin’s doctor and, unable to give only a portion of a vial of insulin, could give Kevin nothing.

Kevin walked out of the pharmacy on New Year’s Eve 2013 without his needed insulin. The pharmacy was closed the following day due to the New Year’s Day holiday. Kevin tried three times to reach his doctor to get a refill. Each time he tried to leave a voice message the recording was cut off which left Kevin unable to communicate his dire situation to his doctor.

Kevin was found dead in his apartment on January 8, 2014.

He died due to Diabetic Ketoacidosis, which was a direct result of not being able to get a refill of the insulin upon which his survival depended. His death was needless.

TRAGEDY BECOMES ADVOCACy

Kevin’s parents were devasted by their loss, but they re-purposed their pain to make sure no other patient or family would suffer the way they had. After Kevin died, they advocated to amend the Emergency Prescription Refill Law in Ohio.

While Debbie and the Houdeshell’s fought for diabetics, many other medications are subject to the same constraints. Because of Kevin’s death and the doggedness of those advocates, the Emergency Prescription Refill Law in Ohio was successfully amended. Now pharmacists are able to dispense a life-sustaining medication, in an emergency situation, in a quantity to not exceed a 30-day supply when the medication cannot be dispensed in smaller increments.

BRING THE GOOD THINGS HOME

Once Debbie learned about the amendment to the Emergency Prescription Refill law in Ohio she reached out to her state senator in hopes of amending the law in Pennsylvania. The laws were similar – Pennsylvania’s law restricted the amount a pharmacist could provide during refills in an emergency to a 72-hour supply. Debbie made enough good noise that she got to meet her local state Senator, Patrick Browne. During the 2017-2018 legislative session, Senator Browne sponsored Senate Bill 542 to amend Pennsylvania’s Emergency Prescription Refill law. Ryan MacKenzie, Debbie’s local congressional representative advocated for this bill in the state House of Representatives. The Pennsylvania Pharmacists’ Association and the Pennsylvania Body of the American Association of Diabetes Educators supported this amendment. The Bill sailed through both Houses without a single nay vote and on February 15, 2018, Governor Wolf signed Senate Bill 542 into law.

NEWS TRAVELS FAST

In addition to Ohio and Pennsylvania, 14 other states have amended their respective Emergency Prescription Refill Laws. These other states include Florida, Idaho, Arizona, Wisconsin, Illinois, Indiana, Kentucky, West Virginia, Oregon, Tennessee, Montana, Colorado, Minnesota and Oklahoma.

The family of Kevin Houdeshell tracks the progress as part of his family’s advocacy mission. They collaborate with Debbie who, after her success in Pennsylvania, moved on to champion similar amendments in other states. Debbie Healy started this advocacy to help her son. It’s several years later now and she’s helped many more people than that.


Kate Pecora

Kate Pecora is a graduate of the University of Massachusetts Amherst where she studied Healthcare Policy and Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. Kate has Spinal Muscular Atrophy Type III. She is currently (e)traveling across the country in search of the most compelling stories of patient access, affordability, and quality. Ultimately this will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter


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Some additional reading about lobbying state representatives:
KNOW YOUR STATE: Interactive tool for medication access and affordability

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