Senate Special Committee on Aging Issues Testimony From Mended Hearts President Smith

WASHINGTON, March 6 -- The Senate Special Committee on Aging issued the following testimony by Mended Hearts President Donnette Smith at a hearing entitled "Complex Web of Prescription Drug Prices, Part I: Patients Struggling with Rising Costs":

"Chairman Collins, Ranking Member Casey, and members of the Committee - thank you for the opportunity to be here today to talk about the challenges I have had in getting the medication I need. My name is Donnette Smith and I am from Huntsville, Alabama. I have suffered from heart-related conditions from birth, and the efforts and skills of some excellent doctors along the way have enabled me to have a full, if complicated life. But today, I sit before you as a person at high medical risk.

"I am a retired federal employee and I live in Huntsville, Alabama, where I spent my career as a technical writer for the U.S. Army and working for NASA. I have also had the honor to be an advocate and resource for heart patients as President of Mended Hearts, a national peer-to-peer support organization for heart patients, providing hope and encouragement for 67 years

"My medical story began at birth, although I did not know that until much later. I was born with a heart defect that led to aortic stenosis and heart failure. After suffering from debilitating shortness of breath throughout my childhood, I finally learned the truth about my condition in my late teens, when a NASA physical revealed a severe heart murmur. I was devastated!

"Just after my 40th birthday I had open heart surgery to replace my deformed aortic valve. I did well for a number of years, but a failing valve and severe cardiovascular disease a few years later led to two more heart surgeries and five stents. After the third surgery in 2009, my doctors said it was urgent to dramatically reduce my cholesterol level, which was off the charts. I believe I tried every statin and step therapy available but nothing worked for me. I was a stroke or heart attack waiting to happen.

"When Repatha, a new type of cholesterol-reducing drug (a PCSK9 inhibitor), became available several years ago, my cardiologist believed that it could dramatically reduce my risk.

"He tried unsuccessfully to get my insurance to cover it. Without insurance, it would have cost me over $14,000 per year. The applications and appeals process were very detailed and complicated and extremely time-consuming for my doctor and his staff. Even with all his effort, it was not approved. When I spoke about my struggles at a cardiology town hall meeting in 2015, a physician there became an advocate for my case. My insurance company eventually approved three months' of coverage in January 2018 and I began taking Repatha. The drug dramatically changed the quality of my life. My LDL cholesterol level fell from 283 to 70 in one month, and I felt the cloud of fear hanging over me finally lift!

"The drug is very expensive and with insurance my copay was $583 per month. That isn't a small amount of money but I was willing and able to pay it if necessary. And I was fortunate enough to discover a manufacturer copay card which sharply reduced the cost. However, the coupon only works if the prescription is covered by insurance. Unfortunately, after three months I received a notice from my insurer telling me that I would have to go through pre-authorization again. That was one year ago and I am still waiting. I heard that the drug's price was recently reduced, which may provide better options if my doctor's latest pre-authorization request isn't approved. Right now I am taking samples of Repatha that my doctor has been able to get for me, which I stretch out by not doing the injections as often as prescribed. He thinks that any amount I can take is better than nothing. I hope that the latest pre-authorization is approved. I have been hanging in there, but I don't know what this is doing to my health for the rest of my life.

"In some ways, I consider myself lucky. I encounter many people who have not had the medical care I have had. I urge you to do something, for all of the seniors and others who cannot afford their medications. Thank you again for the chance to share my story with you today."

[TheHill]