Floor and Committee Statements

Wednesday, November 30, 2016

Floor Speech on the 21st Century Cures Act

“As a 71-year-old citizen of this country, one who’s been in business, been fortunate to be married 49 years to a wonderful woman, raised a family, one who has been involved in public life for 40 years, you learn that there are three kinds of people in the world: Those who make things happen, those who watch things happen, and those who wonder what is happening.

“We have a chairman of the Health, Education, Labor and Pensions Committee in Lamar Alexander who is one of those people who makes things happen. What we’re going to do on the [21st Century] Cures bill in this body in the next week is nothing short of remarkable, but it is an example of somebody who cares and who is willing to do the hard work of legislating is able to bring about.

“It’s a bill which incorporates many of the provisions of this administration, members of this Senate, things that have been worked on for years in the United States Senate and things that will save and improve lives in America.

“For me, it’s personal. It’s personal for two or three reasons. One [of those reasons] is the pediatric review provision. You know, in 2005, I met a young lady named Alexa Rohrbach. Alexa was five years old when I met her, and she came to me about finding cures for incurable diseases and cancers. She had one: Neuroblastoma. She won my heart over. I’ve got her picture still in my office to this day, and I had dinner with her parents two weeks ago in Atlanta at the Rally Foundation’s annual dinner.

“Alexa got her angel wings a few years ago and is in heaven looking down today, but I’m testifying on Alexa’s behalf that the more we can do to accelerate research and development for cures of rare diseases, the more we’re going to make the lives of people and long, rather than short and sad.

“Alexa Rohrbach was an inspiration to me, and I speak today on the 21st Century Cures bill because of Alexa Rohrbach. If this bill had been in place when I met her, she might have been safe from the rare disease she had, and we would not have to talk about her in the past tense but only in the present tense.

“The second reason is some things are finally coming to fruition in this legislation. One is home infusion. I have a wonderful son named Kevin who was almost killed in an automobile accident when he was eighteen years old in 1989. He got a bad leg infection. He had the bottom part of his leg blown off and lost a lot of the bone. They had to put a lot of metal rods in. He had to lay in a hospital running antibiotics through his system to keep his bone marrow from getting infected, and when he came home, he had to come home for six months with antibiotics being administered daily. My wife and I administered those through home infusion.

“He got to recover from his disease at home in his own bed, with his own parents tending to him. Under the law today for home infusion to be reimbursable, it is only reimbursable if you’re in the doctor’s office or hospital. If you’re doing it at home with visiting nurses or any other way, you can’t [be reimbursed.] What costs more: a hospital or home visit? Obviously a hospital.

“This bill provides a way for us to find a way forward to reimburse for home infusion at home so the safest, best, most efficient and least expensive way – to deliver home infusion – is incentivized by the 21st Century Cures bill.

“We also know that neurological diseases [like] Parkinson’s, M[ultiple] S[clerosis], and Alzheimer’s are more prevalent than ever before and are the number one threating diseases to people of my age. This bill provides the neurological registry with provisions to bring in of all those diseases into the registry, all of which have common characteristics to help in more early diagnosis, more early treatment [and a] cure.

“I, as one who suffers from one of those diseases, can tell you the more you learn from one you can help in another. So I want to commend Senator Alexander in his effort to bring that forward so we have a neurological disease registry that works, we have an expedited review process for drugs for rare cancers for children, and so that we do the things we need to do to cure the bad diseases of the 20th century so the lives of people in the 21st century are better and better and better.

“Chairman Alexander is a unique individual, a former college president, a United States senator, and a great leader in health and education and labor and pensions in this Senate, and if we pass this bill next week, it’ll be in large measure because of his belief that if you give everybody a chance to be a part on the same team, whether Democrat or Republican, rich or poor, northerner or southerner, they’ll work together to do the right thing for the American people. Senator Lamar Alexander deserves credit and our appreciation. I thank him for allowing me as a member of the committee to have a chance to work on the 21st Century Cures Act.”