During a House Education and Workforce Committee hearing prior to the congressional recess, Rep. Mark DeSaulnier (D-CA) questioned Bethany Lilly, the Executive Director of Public Policy at the Leukemia & Lymphoma Society, about the effects of possible cuts to the National Institutes of Health and the Affordable Care Act.
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00:00Mr. Chairman, I hope we're still friends, and the comments that have been made by my colleagues
00:05about Medicaid, I welcome. We can stop talking about it if we all have an agreement that what's
00:11in the Republican-approved budget, in terms of the number, is not going to happen the way it's
00:16described in that. So I think apologies are not the right word for my friend, Mr. Wahlberg.
00:24I think there's a recognition that the end product hopefully will be what we can all agree
00:29on, much like the starting product was from the Senate and through the budget process until a
00:36certain point where we're reaching consensus. Ms. Lilly, I am a survivor of stage 4 chronic
00:43leukemia. I like to tell my friends that I was perfectly healthy until I became a member of
00:48Congress when I was diagnosed with stage 4 cancer. And then after that, because of my decreased
00:55immune system, I'm just running on them all. I took a freak fall five years ago at the beginning
01:01of COVID, was rushed to George Washington, and my doctors there told my kids when they flew
01:07out from California that I would die in the next 48 hours. So I have some expertise, not
01:13because I chose to, but because I'm a survivor of the American health care system. And we do
01:19agree that the United States has, we pay the most of any developed country for our health
01:25care, a fifth of the economy, looking at people who help pay for that. And from a business perspective,
01:31clearly this is broken. And we have the worst outcomes of any developed country. I mean,
01:37that's a simple statement. If I were in a restaurant, I was losing money. And I kept borrowing money to
01:44prop it up. I wouldn't be in business very long. And also, if I said I was going to cut my prices by 25%,
01:51and I was also going to cut a third of my kitchen staff, I don't think people would believe me.
01:59So Ms. Lilly denials first, and then I want to talk about the cuts at NIH and ACI. I've got an example
02:06that's not an anomaly, where a gentleman, and again, as a consumer, I could not have done this without help,
02:13as you have said, Mr. Charleston, having met a small business member, and I was a member of NFIB
02:19back when I was a Republican many years ago. I can barely remember sometimes.
02:26So having had, trying to negotiate that. So there's denials, and as you alluded to,
02:32there's the denials before the denials, just trying to negotiate the system, which isn't just
02:38conspiracies or incompetence. I had a friend who used to say, I used to believe in
02:43conspiracies until I discovered incompetence. In this instance, I think it was a combination of
02:48both that you alluded to. But in the case of denials, one case that stands out to me is a
02:53gentleman named Tracy Pike from Illinois, father of three, had stomach cancer stage four. He had
03:00all kinds of cases of precedence in, let's see, Blue Shield of Illinois and Blue Cross of approving
03:07the operation. And then when he was getting ready to go, they denied the approval. He died because he
03:14was denied. Is that an anomaly, or is that what we're seeing more and more?
03:18Unfortunately, it is not. I think it's something that we're seeing more and more as the cost of
03:22health care is increasing. And I'll add that, you know, I think we had a, we testified before the
03:29ERISA advisory committee on this exact issue around denials recently. And that's part of my
03:34written testimony. So I'd refer everyone to that. But I will say, I think we don't know how many
03:40denials occur in employer sponsored insurance. We don't have a lot of information. And that transparency
03:45is kind of the first step in that direction. The Office of Inspector General has looked at denials in
03:50both Medicaid managed care and in Medicare Advantage, where they are incredibly high. Folks don't know they
03:57can appeal denials. I mean, I think that the lack of consumer knowledge is also an incredibly important
04:02piece of this. Kaiser Family Foundation, KFF does sponsor a regular survey of health consumers,
04:09and more than 50 percent of people had no idea they could appeal a denial.
04:13I want to ask you about the cuts to NIH and ACA. I, as a survivor of leukemia, I wouldn't be here if it
04:19wasn't for investments over the last 70 years in research in the Department of Defense, first off,
04:26and at NIH and ACA. What is going to happen? Chronic, CLL is the most common leukemia.
04:34Affects everyone. Doctor told me if I was diagnosed with this 15 years ago, I'd be dead.
04:40Now I have a normal life expectancy times hundreds of thousands of Americans. What will these cuts that
04:46the administration's just done to the department and NIH, how will that affect life expectancy?
04:52Half of cancer treatments in use today were developed by the NCI, the National Institute of
04:58Cancer. We need that research to advance the ball, to make sure that we have new treatments. And with
05:05cuts to that, we don't know. America has led in biomedical research for decades and decades,
05:12and that's why, sir, you're still alive with us today. And I don't know what will happen. We are
05:17monitoring this very carefully and very concerned. The pill I have in my pocket that I'll take at
05:21three in the afternoon was paid for for American taxpayers. It's now covered by Johnson and Johnson.
05:27They charge 500 bucks a pill in this country. In Australia, it was 37 and the EU was 90. When the
05:34Biden administration, with us in leadership, negotiated those prices, it's now $90. So free market's
05:42great, but there's got to be some parameters to the free market. We live in a mixed market.
05:45Thank you, Mr. Chairman. I yield back.
05:47Mr. Chairman Yills, and now I will recognize our former chairman and current chairman of the
05:52Rules Committee, Ms. Fox, for her questions. Thank you, Mr. Chairman. Ms. Strauss, we often