[Congressional Record Volume 163, Number 102 (Thursday, June 15, 2017)]
[Senate]
[Pages S3561-S3562]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         HEALTHCARE LEGISLATION

  Mr. CARPER. Mr. President, earlier, just before the leader came to 
give his closing remarks for the day, I was talking about that Michael 
Davis is going to be a freshman at Middletown High School about 20 
miles south of Newark where 896 intersects with I-95.
  I was mentioning that Michael has succeeded in life as an athlete in 
ways that a lot of people think could just never happen. He has a 
disease called cystic fibrosis, and it was diagnosed very early in his 
life, but it is a genetic disease.
  I talked with him and his mom Jennifer about that disease and how it 
affects our bodies. It is a disease that causes persistent lung 
infection. According to the Cystic Fibrosis Foundation, the condition 
is caused apparently by a defective gene that causes a thick buildup of 
mucus in our lungs and in other organs; and that mucus can clog our 
airways and trap bacteria that leads to infection, can lead to 
extensive lung damage and, in worst cases, to respiratory failure and 
then possibly maybe even likely death.
  This is a disease that 14-year-old Michael Davis lives with. I have 
heard, for somebody who has cystic fibrosis to run any distance at all, 
they--I ran this morning, and I felt like I had some kind of disease. 
It was humid out there. I think it was probably higher levels of ozone 
than I like to run in.
  For folks with cystic fibrosis like Michael, breathing is like they 
are breathing through a straw. Imagine that, trying to run 5 kilometers 
or a half marathon, which is 13.1 miles, and to be able to breathe 
through a straw effectively and still run distances like that is truly, 
truly remarkable, but that is what he does.
  Earlier this year, he completed, as I said, the New York City half 
marathon, and one of the people who ran with him was my son 
Christopher, who is a triathlete in his own right. He is 28 years old 
and a great runner. He, also like Michael, can run me into the ground, 
and I am proud of them both.
  Michael was diagnosed during a screening, I think, just 3 weeks after 
he was born. He was 3 weeks old, and he was diagnosed with this 
disease. His mom said she was shocked. To her knowledge, there weren't 
any members of her family on her side or the father's side who had 
cystic fibrosis, but this was a diagnosis made 3 weeks into Michael's 
life--imagine that, 3 weeks.
  After the diagnosis, his mom Jennifer faced some scary unknowns as 
she learned more about his condition, including average life expectancy 
for those who have cystic fibrosis.
  She immediately sought care for Michael at the Children's Hospital 
that is up the road from us--I live in Wilmington, DE--but it is up the 
road 25 miles north of Wilmington. For the last 14 years, Michael has 
been treated at that hospital. Obviously, the fact that he can run a 
half marathon with cystic fibrosis suggests that he is getting 
exceptional care there.
  Michael sees the doctor about every 8 weeks when he is feeling well. 
He sees a doctor more often when he is not feeling well, when he is 
feeling really sick.
  He wakes up every morning at 4:30. I get up around 5:30, and he has 
already been up for an hour when I get up in Wilmington, DE. He does it 
to use a high-frequency chest wall oscillation device. They call it The 
Vest. What it does is, it helps break up the mucus in his lungs, and he 
continues to use The Vest several times throughout the day. He must 
also take over--are you ready for this--40 medications every day. So 
that is his regimen.
  He gets up every day at 4:30, straps on The Vest, uses it several 
times throughout the day. The Vest shakes up his lungs and the mucus 
there so he can live, and he takes all his medications as well.
  He told me, when we met with him and his mom a couple weeks ago, that 
cystic fibrosis is very frustrating, but he copes by trying to lead a 
healthy lifestyle. Just last week, Michael received national attention 
when he was named the Boomer Esiason Co-Athlete of the Year. Boomer was 
a great football quarterback, if I am not mistaken--I am tempted to say 
with the Cincinnati Bengals. I am looking for the pages to tell me 
whether I am right or wrong, but I think I am right. The Boomer Esiason 
Co-Athlete of the Year is Delaware's own Michael, and we are very proud 
of Michael, very proud of Michael.
  The fact is, access to these treatments and medications are really a 
matter of life and death for people with cystic fibrosis. If something 
should happen and Michael and his family would lose healthcare, they 
would reach out and try to get coverage. Before we had the Affordable 
Care Act, there was a pretty good likelihood that finding that coverage 
would be very difficult, and it would be difficult because he has 
cystic fibrosis. He is not an inexpensive young man to take care of. To 
keep him alive and well and able to go to school and do the amazing 
regimen that he does takes money and resources, medicine and medical 
technology.
  The way healthcare used to be provided in this country, when somebody 
had a preexisting condition like cystic fibrosis and they lost their 
healthcare--maybe a parent was working, had coverage, and lost the 
healthcare, lost the job--the person, in this case Michael, would have 
been out of luck because a lot of the health insurers used to say: 
Well, we don't want to cover this person because it is going to cost us 
a boatload of money.
  I know there are problems with the Affordable Care Act. There are 
things I would like to change. What I hope we will do at the end of the 
day is not get rid of it and not just repeal it, but I hope we will 
retain that which is good and fix the things that ought to be fixed.
  One of the things that needs to be retained is the idea that there 
should be a prohibition against insurance companies simply saying that 
if somebody has a preexisting condition and they lose coverage, they 
can continue to be denied coverage. They can get the coverage they 
need, and that is one of the very, very good things about the 
Affordable Care Act.
  Our new pages here, you guys are about 2 years older than Michael 
Davis. Hopefully, you guys will live to be 100 or more. The only reason 
he is alive today is because he has access to the kind of healthcare we 
all want for our children and really for our parents.
  I am a big believer--our pages hear me. I know they will only be here 
for 3 weeks, but they will probably hear me, when they come to the 
floor, talk about the Golden Rule. It is something that was impressed 
upon me at an early age, about the age of all of you. The Golden Rule 
goes something like this: Treat other people the way we want to be 
treated. It is pretty simple.

[[Page S3562]]

  I grew up in a Protestant Church, but I don't care whether you are 
Protestant, Catholic, Jew, I don't care if you are Muslim, I don't care 
if you are Buddhist, Hindu--you name it--all of those religions, every 
one of them, has something in their Sacred Scriptures something like 
the Golden Rule: Treat other people the way you want to be treated.
  I think we try to do that in the Affordable Care Act, imperfect as it 
is. I think one of the best examples of the Golden Rule in the 
legislation, in the law, is the idea that if somebody loses coverage 
and they have a preexisting condition, we don't just cast them aside 
and say: Well, that is too bad. We give them another shot to get the 
coverage they need.
  In the case of Michael Davis, the coverage, the access to healthcare, 
keeps him alive and not just alive to mope around and feel sorry for 
himself but to go out and run circles around the rest of us. He is an 
inspiration to me, and I think he is an inspiration to all who know 
him.
  Mr. President, I think I may possibly be the last speaker. I am going 
to bid you good night and see you next week.

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