Hearing of the Labor, Health and Human Services, Education, and Related Agencies Subcommittee of the Senate Appropriations Committee - Remarks of Sen. Moran, Questioning of Secretary of Health and Human Services Alex Azar about Organ Transplant and Procurement Network

Hearing

Sen. Moran: "In regard to the liver allocation issue, Mr. Secretary, let me ask just a couple of questions and then express my concern and dissatisfaction. Let me first ask, if you believe that enough is being done to help individuals with end-stage liver disease who are not yet on the waitlist? So, there's another population, those who are a waitlist waiting for a liver transplant, there are those who are not on the waitlist yet, is enough being done to advance their well-being?"

Sec. Azar: "I think the number one thing that we can all be doing is working, as the Chairman referred to it earlier, is to increase the supply of livers that we have for transplantation. So, that's the most important thing we can do to help with advancing individuals. I hope we're doing everything we can with regard to care for individuals suffering from liver disease awaiting transplant. If there are things that we could be doing differently please do let me know, I'd want to make sure we're doing that.

Sen. Moran: "Would you commit the department to a full public disclosure, a transparent public debate on this allocation, organ allocation transplant process?"

Sec. Azar: "I'm happy to work with you on what that might look like. As I mentioned to the Chairman, the challenge with this OPTN organ allocation issue is that Congress deliberately took that out of my hands to make it a nonpolitical issue. And so, when we don't like a conclusion I'm fairly restricted in what I can do. But, we certainly, I believe the OPTN process was a public process with a public record, but happy to work with you and your staff on any vehicle to ensure that."

Sen. Moran: "Mr. Secretary, you're moving me to my complaining aspect by your comments. Because, it was only after a lawsuit was filed, as I understand it, that this allocation process was then considered for change, and when you tell me that we constructed the ground rules for you to be removed from the process, you do appoint the HRSA director. The HRSA director is one who has written a letter to OPTN encouraging them to quickly implement the decision that they made.

"I would also tell you that from time to time in this job, people tell me something that doesn't always turn out to be true but in our meeting Senator Blunt and I had with the HRSA Director, the request was that we make certain that our constituencies, transplant programs in our states, submit not just comments, but please bring us a proposal, because we're so interested in listening to the proposal. Don't just complain about the proposal that's out there, tell us how to do it better. And, I can tell you that the end result of our programs doing that, they were not considered and in fact, the decision was made before those comments were submitted, before that proposal was submitted by our constituents. I quoted you, I wrote down what you said, and in a last minute or late, the computer program shut down because there were so many comments, the only lateness of our programs supplying their comments and proposals was because the computer was shut down because of commentary. And the decision was made before these were ever read and then they were approved with no changes thereafter. The original decision was made by the liver and intestine committee and without ever seeing the comments of our constituents.

"And then secondly, it was approved immediately with no change even though you can claim, perhaps correctly you can claim, that the comments were then read after the initial decision was made. My point is that while I'm often, perhaps I misunderstand what has been requested of me or what my instructions are of how I can be of help to my constituents, what I think we did was exactly what we were told to do, with no beneficial thing happening as a result of following those instructions. So this process has been flawed and it is a flaw that arises out of the fear of a lawsuit. And after a long period of time after a long period of time the policy in place was changed almost overnight in response to a lawsuit. And you're right, the issue is more organ donation, and the policy that is being developed is contradictory to what you said is the goal. I'll be back for the second round."

Sen. Moran: "I'll attempt to be brief Mr. Chairman thank you for your second round. Mr. Secretary, I want to highlight, you and I would agree this is a significant issue affecting liver transplants. This policy consequences and its significant. That's true, correct?"

Sec. Azar: "Yes, the issue of liver transplants are very important to all of us, absolutely."

Sen. Moran: "And I got involved or interested in this topic after a conversation with a liver transplant program in my state, but as a result of that activity, I've been amazed at the number of people, individuals in Kansas and elsewhere, who come to me to talk about the importance of this liver transplant policy. People who have had a liver transplant, people who are waiting for a liver transplant, people who want to be on a list for a liver transplant. Again, you and I would both highlight, I'll use this as an opportunity to highlight the importance of being organ donors, we need more organs to meet the demands, but this is not just about the consequences to a particular transplant program, this issue has significant consequences, in fact life and death consequences, for people across the country. Finally, I would remind you that Senator Grassley, along with almost half the senate, sent a letter to you, which I don't believe, at least I've not seen a response, and I would encourage you to respond."

Sec. Azar: "Thank you, and I want you to know that I take that letter very seriously. It has my personal attention and that was what promoted me to actually ensure that we went to OPTN, and asked them to think again and ensure the full consideration of the comments out of Kansas and Missouri providers. That was, even in spite of the computer glitch, I understand the process here was bad. In terms of the interactions with you and on behalf of the department I apologize to you for any lack of courtesy and also just any problems in that process. My understanding is those comments, in spite of the computer glitch, were summarized to the OPTN board in their decision making. So at least it was the summaries as part of the decision making, and then presented in full to the liver committee later. I understand that is not necessarily everything you want to hear, I terms of it would have been nice if they had been presented in full before any initial presumptive decision was made. That's why I went back and said please think again, please look at these comments, look at these concerns. Obviously, I've got respect for every signatory on that letter, I hope you, if you don't have it we'll get it to you, the letter of response that I got, and if there are avenues, further avenues, that are appropriate, legally justifiable to assure appropriate process and consideration. I'm most happy to consider them."

Sen. Moran: "I have not been discourteously treated. But I have failed to get the results I'm looking for, even when courteously treated, it is results that I am looking for on behalf of folks who desperately need a liver transplant and other organs. Thank you."

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