[Congressional Record Volume 164, Number 50 (Thursday, March 22, 2018)]
[Senate]
[Pages S1981-S1982]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]



                  Unanimous Consent Request--H.R. 5247

  Mr. JOHNSON. Mr. President, I realize the hour is late. I will move 
quickly to my unanimous consent request, but I want to quickly state 
that this is so important that this can't wait, and I am really asking 
a pretty simple request of my colleagues that we stop playing games 
with people's lives because it is well past time that we passed the 
Right to Try. The Trickett Wendler, Frank Mongiello, Jordan McLinn, and 
Matthew Bellina Right to Try Act of 2018.
  We passed this unanimously through the Senate in August. The House 
has acted now. I am just asking my colleagues, please, these desperate 
patients are terminally ill, and they have waited far too long.
  Mr. President, I ask unanimous consent that the Senate proceed to the 
immediate consideration of H.R. 5247, which was received from the 
House. I ask unanimous consent that the bill be considered read a third 
time and passed and the motion to reconsider be considered made and 
laid upon the table.
  The PRESIDING OFFICER. Is there objection?
  The Democratic leader.
  Mr. SCHUMER. Mr. President, reserving the right to object, and I will 
object.
  I just want to make clear that I am sympathetic to the goals my 
friends from Wisconsin and Indiana are trying to accomplish. In fact, 
the Senate has already passed a version of this bill once and dedicated 
time to work on the outstanding issues to get a good compromise and 
pass it into law and pass it into law quickly.
  I believe we all support the goals of safety and increasing access of 
investigational drugs for terminally ill people, but the key is we need 
to ensure there are safety mechanisms in place when we do this. A 
significant part of that is making sure the FDA is part of the process. 
They already have an expanded access program. We need to ensure that we 
are not increasing the risk of patient harm or endangering clinical 
trials so lifesaving drugs can continue to be developed and people have 
access to them.
  So I assure my colleagues that we will work together to get something 
done, and done quickly, because this is an important issue. People who 
have terminal illnesses deserve every opportunity and chance at 
survival, and I look forward to working with my colleagues and moving 
forward on the Senate bill.
  With that, Mr. President, I object.
  The PRESIDING OFFICER. Objection is heard.
  The Senator from Wisconsin.
  Mr. JOHNSON. Mr. President, I do want to point out the fact that the 
Right to Try bill only allows access to drugs that have already passed 
phase 1 safety approval from the FDA. There has been an awful lot of 
misunderstanding from that standpoint.
  All we are asking is, what this bill would do is allow terminal 
patients who have no other options--they have exhausted all treatment 
options, they do not qualify for a clinical trial, they are near death 
or, according to the House bill, subject to severely premature death. 
It just gives those individuals the right to choose for themselves, not 
have a faceless bureaucrat at the FDA make that decision.
  We passed this unanimously from the good efforts of my colleague, the 
Senator from Indiana, who will speak shortly, but also Senators 
Alexander and Murray. We spent many hours in discussion crafting a bill 
that passed unanimously.
  By the way, that didn't surprise me because out of the 39 States that 
passed Right to Try through their legislature, 38 have passed it and 
signed it into law. Of the legislators who voted for Right to Try, 98 
percent have voted yes. That is a vote tally of 5,604 to 126 because it 
makes so much sense to give those terminally ill patients the freedom 
to make those decisions themselves.
  The good news is, the House passed the Right to Try bill--not 
unanimously--with bipartisan support. The vote was 267 to 149, and 35 
Democrats joined, most Republicans voting yes. A lot of that was due to 
the good efforts from my Democratic colleague, the Senator from 
Indiana.
  I want to give a brief history on Right to Try in terms of my 
involvement. I first went to the Goldwater Institute in 2014. They, 
through their efforts, decided to go through the strategy of having 
States pass it, and Colorado was the first State to pass Right to Try 
in 2014.
  Shortly after that meeting, I met a young mom, Trickett Wendler, a 
mother of three children. She had ALS. I just mentioned the fact that I 
had met with the Goldwater Institute, and I was fully in support of 
Right to Try, and tears started streaming down the face of Trickett 
Wendler. That is when I decided to become the champion and lead sponsor 
of Right to Try in this body. Unfortunately, Trickett Wendler lost her 
battle with ALS in March of 2015.

  I want to briefly mention the other individuals for whom this bill is 
named. Matt Bellina, a former lieutenant commander, Navy pilot, married 
to

[[Page S1982]]

his wife Caitlyn Bellina, and he has three boys.
  This is what Matt Bellina said in testimony:

       Please let them know that I have had ALS too long to meet 
     the exclusion criteria for any promising trials. No drug 
     company will offer me treatments under the current expanded 
     access guidelines. Two reputable companies have already 
     indicated that they would try to treat me under the rules of 
     this bill. A vote against this is essentially a vote to kill 
     me. It is a vote to make my wife a widow and leave my boys 
     fatherless. I can't stop anyone from voting that way, but 
     please ask them to have respect to look my family in the eye 
     when they cast their vote.

  Frank Mongiello is another victim of ALS. I just met with him a few 
hours ago. I first met with him when he could speak--he can no longer 
speak--but he spoke at our press conference, and here is his quote. He 
paraphrased Abraham Lincoln and he said:

       President Lincoln said, ``If I am killed, I die only once; 
     but if I dread it, I die over and over again.''

  Frank went on to say:

       I have an 80-percent chance to be dead in 2 years, and, for 
     me, seeing these potential drugs out on the market and not 
     being able to take them is like dying over and over again.

  The final namesake of this bill is little Jordan McLinn. We met him 
when he was 6 years old, and now he is 8. His mother Laura is a 
tireless advocate. I know the Senator from Indiana knows the McLinns 
well.
  The FDA advisory committee on April 25 heard from, I think, 55 
witnesses about a drug called eteplirsen to treat Duchenne's muscular 
dystrophy. The advisory committee, having heard from people like Laura 
and Jordan McLinn wanting access to that drug, voted no. Fortunately, 
the FDA--and this is pretty rare--overruled the advisory committee, and 
Jordan now is at least being treated. They are tireless advocates for 
Right to Try.
  These are the people we need to help. These are the people whom Right 
to Try was meant for.
  I don't know why it took the House 7 months to craft a bill and 
finally vote on it. I can't tell you how many people during that 7 
months sought treatment in other countries. I can't tell you if anyone 
during that time period possibly lost their life because they didn't 
have access to treatment. I don't know why the House felt compelled to 
change the bill that we carefully crafted that passed unanimously. I 
don't know why they simply didn't take up the Senate bill and pass it, 
but I do know Right to Try saves lives.
  I will quote one example, Dr. Delpassand, a courageous oncologist 
from Houston. He was engaged in an FDA trial treating an aggressive 
form of endocrine cancer. It was working. So he petitioned the FDA to 
allow additional patients to be added to the trial. The FDA said no, 
but Dr. Delpassand had a Right to Try bill in Texas. It didn't have 
liability protection. He risked his career and all of his possessions 
and he signed up additional people under the Texas Right to Try laws.
  In the end, he signed up 176 people. We just checked with Dr. 
Delpassand, and 148 of those individuals are still alive today because 
of his courage. That is why we need to pass a Federal Right to Try law, 
so individuals with that level of courage don't risk their careers, and 
those patients have a chance to live.
  I would like to yield to the Senator from Indiana for his remarks.
  The PRESIDING OFFICER. The Senator from Indiana.
  Mr. DONNELLY. Thank you, Mr. President, and thank you to the Senator 
from Wisconsin.
  I echo my support for this legislation. We worked together nonstop to 
get this accomplished, as has been mentioned.
  This passed the Senate 100 to nothing already. We are hopeful to wrap 
this up. The House just sent us a vote back, and we will continue to 
work nonstop to get this done because it is the right thing to do.
  I think of the McLinn family in my home State, and they are a 
representation of families all over the country struggling with the 
same challenges. Our job is to try to make their lives a little bit 
easier, a little bit better, so that all of the people who are 
struggling with Right to Try challenges can get a chance to live their 
life to the fullest and for a long time.
  So, the hour is late. I just want to second the efforts of my friend 
and colleague from Wisconsin, and we will continue to move forward.
  The PRESIDING OFFICER. The Senator from Wisconsin.
  Mr. JOHNSON. Mr. President, I thank the Senator from Indiana who has 
been a real champion and a real partner. I know he tried to get as many 
House Members to vote for the House bill as he could.
  By the way, that was the good news. I am calling on the House now, 
since we have an objection in the Senate on their bill, to please take 
up the Senate bill. It is a nonpartisan bill that passed unanimously 
through the Senate. Don't wait another hour. I know they are in recess 
for a couple weeks, but I am calling on them, as soon as they come back 
from recess, take up the Senate bill, pass it, and get it on the 
President's desk. It is well past time to give these patients, these 
terminally ill patients and their families, the Right to Try and the 
right to hope. So I want to again thank the Senator from Indiana.

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