Earlier today President Trump delivered remarks about an important executive order initiative to fight kidney disease. [Video and Transcript]
[Transcript] THE PRESIDENT: Well, thank you very much, Secretary Azar. And thank you for everyone being here. Please sit down. Let’s enjoy it. It’s much better. You’d rather sit, right?
But today we’re taking groundbreaking action to bring new hope to millions of Americans suffering from kidney disease. It’s a big deal.
I want to express my gratitude to Secretary Alex Azar, Secretary Robert Wilkie — who’s here. Thank you, Robert. Thank you. Secretary Eric Hargan. Thank you, Eric. Thank you. Nice to see you. Administrator Seema Verma, who’s so outstanding. Done such an incredible job. And Director Adam Boehler. Thanks also to Senator Todd Young. Where’s Todd? A young, great senator. And Representatives Michael Burgess and Matt Cartwright. Thank you. Thank you, fellas. Thank you very much.
As part of our commitment to ensuring great healthcare for every American, my administration has already launched many bold initiatives to battle major diseases and save American lives.
We are aggressively confronting the opioid, fentanyl, and drug addiction epidemic. And that’s what it is. It’s an epidemic. But we’re making tremendous strides. I think you’re probably hearing about it. We’ll be talking about it very soon. It’s hard to believe we’re making tremendous strides. Very tough situation.
We’re working with Congress to develop a 500-million-dollar investment in new treatments and cures for childhood cancers. And we’ve launched a campaign to end HIV/AIDS epidemic throughout America. We think that within a fairly short number of years, like 10, we will have that epidemic totally under control. And if you would’ve said that two years ago, people would’ve said, “There’s no possible way.”
THE PRESIDENT: Hi. (Laughter.) He’s even happy. (Laughter.)
To give critically ill patients access to lifesaving cures, we passed Right to Try — something I’m so proud of — where people that are terminally ill, or very, very ill, can go and see their doctor. And when we have something in our pipeline — and nobody has a pipeline like the United States of America; we have the greatest technicians, doctors, labs in the world by far, and medical research — we can get them a possible cure.
We give them hope. It’s really hope. It’s “Right to Try.” I love the name. But it’s hope. So instead of going to Asia, instead of going to Europe, or wherever they may go in the world — they go all over the world. They go to places you’ve never heard of, if they have money. If they don’t have money, they go home with no hope and they die.
And we now have the Right to Try so that if we have something that’s five years off, but it’s looking good, they sign a piece of paper and we give it to them. And you have no idea how incredible some of the results are. We’ve had some people — one young woman, in particular. It’s so — so incredible the results. People that were expecting to die are living.
And, Alex and Seema, it’s been — that’s been a tremendous thing, the results. Not only is it a wonderful thing in terms of knowing how a certain medicine or possible cure works, but it’s incredible to see the results. We’ve had incredible results.
So we’re very proud of Right to Try. They’ve been trying to get it for 44 years. More complicated than you think to get it. A lot of people didn’t want to have it. But we got it, and it’s just something we’re very proud of.
Now, with today’s action, we’re making crucial progress on another core national priority — and that’s the fight against kidney disease.
In 2017 — (applause) — in 2017, kidney disease was the ninth leading cause of death in the United States. Kidney health affects families throughout America, and those who suffer from kidney disease experience a significant toll on their daily lives. I’ve spoken to people. They say the work is so intense. The time is so enormous that you spend. And it’s — it’s like a full-time job for people. Sometimes the work itself — I was speaking to Alex; he said the work itself is so intense, the work kills people. It literally kills. You have to work so hard.
For these patients, their loved ones, and for the impacted — all those impacted by kidney disease — I’m here to say: We are fighting by your side, and we’re determined to get you the best treatment anywhere in the world. And we’ve made a lot of progress. We are with you every step of the way.
In a few moments, I’ll sign an executive order taking vital steps to increase the supply of kidney-available transplants. (Applause.) This action will also dramatically improve prevention and treatment of this life-threatening illness, while making life better and longer for millions of Americans. It’s a tremendous thing that’s happening.
Roughly 100,000 Americans are currently awaiting a kidney donation. Every day, 10 of our fellow citizens die waiting. Many, many people are dying while they wait.
We’ll do everything we can to increase the supply. And we’ll be able to do that, and very substantially, in terms of the available kidneys and getting Americans off these waitlists so they can lead a full and healthy and happy life. That’s the best answer of all.
That’s why my order supports the selfless individuals who donate kidneys by granting them reimbursement for extra expenses associated with organ donation, such as lost wages and childcare. (Applause.) And those people, I have to say, have never gotten enough credit. What they do is so incredible. They have never, ever gotten enough credit.
Secondly, we are revising the rules of governing organ procurement organizations. So the organ procurement organizations are going to have rules which really ensure available kidneys and that they reach waiting patients as quickly as possible, because oftentimes they just don’t make it in time. There are cases where they have to be there immediately; they have a certain period of time. They don’t make it in time. We are going to make it so that it gets there in time.
We’ll establish more transparent, enforceable, and objective metrics for identifying potential kidneys for transplant. The result will be more and faster transplants for those in need.
By streamlining rules to help patients and by incentivizing the supply of kidneys — very substantially incentivizing, I have to add — an estimated 17,000 additional Americans could receive kidneys that they desperately need. We think that’s going to happen. We think that number is very doable, and it could even be higher than that.
In addition, up to 11,000 more Americans could receive heart, lung, and liver transplants annually. So, heart, lung, and liver. That would be up to 28,000 American lives saved every year, and that number could be quite a bit higher if it works the way we anticipate it to work. (Applause.) Thank you.
Because a kidney transplant costs much less than prolonged dialysis — which is an incredible thing — the ultimate is the kidney transplant, and the cost is far less when you think about it. It makes a lot of sense in so many ways. Our policies will save up to $4.2 billion a year for patients, families, and taxpayers. That’s an incredible thing.
Today, we’re also taking important steps to improve kidney disease treatment and prevention. We will be changing the way that we reimburse Medicare providers, encouraging them to diagnose and treat patients earlier — very important, the word “earlier” — allow for home care; and increase the rate of transplants.
Crucially, our new system will ensure that more patients undergoing dialysis can do so from the comfort of their own home. (Applause.) And doing this from the home is a dramatic, long-overdue reform — something that people have been asking for for many, many years. It sometimes amazes me that it never got done. So many things don’t get done in government, but now we’re getting them done. (Applause.) Right, Todd? Right? We’re getting them done. You better believe it.
Right now, only 12 percent of patients on dialysis receive care at home. My executive order will change that and reduce cost, transform care, and greatly improve the quality of life for kidney patients all across the nation.
Finally, this executive order — such an important executive order — encourages private enterprises to partner with government to achieve incredible medical breakthroughs. We are going to prioritize a truly transformative goal: the development of an artificial kidney. (Applause.) And it’ll happen. It’ll happen.
Here with us are a group of very strong and brave Americans who will tell us about the urgency of improving kidney health.
I’d like to start by introducing Jamie and Andrew Nash to come up and tell us about their one-year-old, beautiful son, Hudson. Please. (Applause.)
MS. NASH: Good morning everyone, and thank you, Mr. President, for welcoming us here today.
Kidney care is very dear to our hearts, as our son, Hudson, one year ago was born with significant damage to both his kidneys. He spent two months in the NICU. And since then, to keep him going, he takes numerous medicines, receives multiple shots, blood draws, and more doctors’ visits than I can count.
Hudson will go on peritoneal dialysis until he is big enough to receive a living donor kidney transplant, we are hopeful, within the next year. This is a disease Hudson will have to deal with his entire life — never going more than three months without a blood draw and multiple medicines twice a day forever.
Our family is hopeful that today’s executive order will raise awareness, drive kidney care innovation, increase access to transplantation, and provide much better care and treatment for Hudson and the millions and millions of Americans living with kidney disease.
Mr. President, thank you for your commitment you have made today to improve the lives of everyone affected by kidney disease, including our Hudson. Thank you. (Applause.)
THE PRESIDENT: So beautiful. Thank you, Hudson. Get better soon, Hudson. You’re going to be good. By the time it comes, by the time he’s a little bit older, I think you’re going to have a lot of answers that we’re not even thinking about right now. You really believe that, right?
MS. NASH: I think so too. Yes.
THE PRESIDENT: I really believe it. Beautiful baby.
Nancy Scott is a retired nurse and an ordained minister who was afflicted with kidney disease for more than a decade.
Nancy, please come up and tell us your story. It’s some story. (Applause.) Thank you.
MS. SCOTT: Thank you, Mr. President. Good morning. As he said, my name is Nancy Scott. I am an ordained minister, retired nurse, president of Dialysis Patient Citizens Education Center, and currently slowly working on a doctorate in industrial organizational psychology. But most of all, I am a patient.
In March of 2004, I woke up on a Saturday morning and I could not see nor could I stand up. I went to the emergency room, and by Monday I was a full-fledged dialysis patient.
My daughter said, “Mom, you can’t be hooked up to a machine three times a week. I’m going to give you a kidney.”
We went for a workup, and they found out that I also had breast cancer. So I was on dialysis for seven years. I received chemo and radiation. I had to wait three years before I went on a transplant because, in the state of Delaware, you have to wait three years.
I am transplanted now for eight years, and I’m living proof — (applause) — don’t make me cry. Don’t make cry. (Laughs.) I’m living proof, as I said, that dialysis does not mean the end of your life. I did dialysis. I did not let it do me.
Mr. President, thank you for this executive order that thousands of us had been working for, focusing on these issues. And I’m glad to see, in my lifetime, that some of it will come to fruition. Thank you all very much. (Applause.)
THE PRESIDENT: Wow. That’s an incredible story. That’s hard work, Nancy. Huh? That was hard — that was hard work.
MS. SCOTT: Yes, it was.
THE PRESIDENT: You just say that — that the regimen of what she had to do and go through, incredible. Great story.
At age 25, Tunisia Bullock was blindsided by kidney failure while she was being treated for another disease. Tunisia, please come up and tell the story. (Applause.)
MS. BULLOCK: Thank you, Mr. President. As a young woman, just graduating college with a degree in flute performance, the world was at my fingertips. I was so excited to start my life as a graduate student at the University of New Mexico.
Little did I know that on the morning of July 1st, 2006, my world would change. The total trajectory of my life would change. Four months later, I was diagnosed with lupus. And a year after that, I was diagnosed with end-stage renal disease.
On June 13th, 2008, I woke up in the hospital attached to a dialysis machine. I had no idea what was happening to me. Would I live, or would I die? It was in this moment that I knew I was in the fight of my life.
As I journeyed through dialysis care, I learned that I had to take my care into my own hands. It was through my own curiosity and research that I found what treatment mode would best be suited for me.
As I reflect back, I now realize that my healthcare providers failed me at the beginning of the dialysis continuum.
Mr. President, I am optimistically hopeful that the policies being proposed will help dialysis patients and families navigate the renal care system with less confusion and more ease.
THE PRESIDENT: Thank you.
MS. BULLOCK: Thank you. (Applause.)
THE PRESIDENT: Thank you very much. Thank you. Thank you. Do you still play the flute?
MS. BULLOCK: I still play the flute.
THE PRESIDENT: Good.
I just asked Tunisia, “Do you still play the flute?” She said, “I still play the flute.” I’ll bet you play it well, too, right? (Laughter.) I’ll bet you’re good.
Thank you very much, Tunisia.
With today’s order, my administration is taking one more vital step in a series of actions to deliver great healthcare for the American people.
We’ve launched a bold initiative to lower the cost of prescription drugs. That’s a big thing, and we’re working very hard on it. And we have some very big moments coming up, I think, over the next week, having to do with that — Seema and Alex and everybody. I think we have some very big moments coming up very shortly. That will be something very special.
Last year, we saw the first drop in prescription drug prices in over 46 years. We’re expanding affordable insurance options for millions of American workers through association health plans, short-term plans, and health reimbursement arrangements. Some of the options are 60 percent less expensive than what you have today, or, I should say, probably a year or two ago.
And we will always protect patients with preexisting conditions. It’s an absolute fact. It’s done. The Republican Party will protect patients with preexisting conditions. (Applause.)
We’re working with Congress to stop surprise medical billing because no American should be blindsided by medical bills to services that they never agreed to in advance. They go home; they get a bill that’s more money than they have in the bank. They don’t know what to do. And we have stopped that, and we’ve made tremendous progress in that. That was a tremendous problem and continues to be until people find out what the new system is.
To give patients the ability to choose the best doctor at the best price, we’re giving you the right to know the price and quality of healthcare services before you purchase care — something that you were not able to do.
We’re giving you transparency. And that is something that some people think will be, in many ways, bigger than healthcare. It’s going to be an enormous thing. We signed the bill a month ago, and the regulations are being worked out right now. And I assume you’re going to have them done quickly.
I know Alex and Seema, they’ll have them done probably within a couple of days. (Laughter.)
SECRETARY AZAR: On your desk.
THE PRESIDENT: How long it will be — how long will it be? Pretty —
SECRETARY AZAR: Really fast. (Laughs.)
THE PRESIDENT: It will be really fast. Okay. He’s very smart. (Laughter.) He’s a very smart guy.
So that’s a big thing: transparency. It will be bigger than most people understand. One of the bigger things that we’ve done from the medical and healthcare standpoint.
Finally and most significantly, we’re creating millions of new jobs, each one with the means to help families afford better healthcare.
We will not rest until Americans have the healthcare system that they need and deserve: a system that finally puts American patients first. We say, “America first. America patients first.”
Thank you very much for being here. I just do want to thank some of the people, because Seema and Alex and so many of the people — senator, congressman — you’ve worked so hard on these things. You’ve worked so hard on the kidney. Very special — the kidney has a very special place in the heart. It’s an incredible thing. People that have to go this — people that have loved ones that are working so hard to stay alive. They have to work so hard. There’s an esprit de corps. There’s a spirit like you see rarely on anything.
So I just want to thank all of you folks for being here. It’s really fantastic. And it’s truly an exciting day for advancing kidney health in our country.
I just want to end by saying, on behalf of every American with kidney disease, I will now sign this historic executive order.
This is a first, second, and third step; it’s more than just a first step. But we’re going to come up with solutions that, over a period of 5 years and 10 years — I think most people, even in this room — experts in this room — won’t even believe. From what I hear, there are signs and potential out there that’s just incredible.
Thank you very much for being here. And let’s sign the executive order. Let’s get going. (Applause.)
I think we’ll give this pen to Hudson. (Laughter.) We’ll give this one to Hudson.
(The executive order is signed.) (Applause.)
Thank you, everybody. Thank you.