HOPE takes the AST to the White House

The current dysfunction in Washington is deplorable and has diminished the lives and business of all Americans. It has impacted transplantation at many levels from the uncertainty created by the partisan fighting over health care reform, arbitrary spending cuts by Sequestration, delay in advancing the Immuno Bill and the self-destructive failure to fund the NIH adequately. But today I can report a bit of hope, literally, that Washington can still accomplish some good things. I witnessed a clear example of the power that working with government, special interest advocacy groups and organizations of professionals like the AST can do the right thing and advance medicine and address the needs of all our patients. Yesterday, I was honored to represent the AST in the White House Oval Office as President Obama signed the HOPE Act into law.

We are all entitled to our personal political beliefs, likes and dislikes. But when you enter the West Wing as a group of only seven including two Congresswomen and are greeted outside the Oval Office by the President striding out to greet everyone personally and invite us into this unequivocal center of our Nation’s power and history, then there is really nothing else to feel but proud to be an American and witness the exercise of our democracy’s power to make good laws and help people. And I have to say that the President was exactly like he is on television: professional, confident, direct, athletic in his movements and posture, and comfortable in an incredibly complicated space. With secret service at every turn looking grim, a phalanx of staffers managing every moment, fully uniformed marines everywhere, and 30 photographers suddenly appearing through double glass doors at his gesture to take 1000 pictures, the President remained poised and the master of the moment as he signed the bill with six different pens. I also had to laugh to myself as I stood at his left shoulder. He spoke to the press about the tremendous value of this new law and specifically how it represented proof that Congress could still get some good things done. I have always thought it funny on television when the President is talking and there are these people standing behind him, representing, nodding their heads to punctuate his words with agreement. Here I suddenly was, transported to the Oval Office to be another nodding head. Go figure.

A brief version of the story is necessary telling. The HOPE Act began as the Master’s thesis of Brian Boyarsky studying with Dorry Segev at Johns Hopkins University as an investigation into various ways the challenge of organ donation was being solved in different countries (1). The good experience of Dr. Elmi Muller, a transplant surgeon in South Africa with transplanting HIV positive patients with HIV positive deceased donors inspired them to pursue this agenda here. She has done 26 since 2008 with very good outcomes (2). They engaged several powerful national HIV advocacy groups in a three-year process including HIVMA and AmFAR. Professional groups like ASN, ASTS and the AST also lent support. The process moved relatively easily through the Senate where it was co-sponsored by Senators Barbara Boxer (D, California) and Tom Coburn (R, Oklahoma). But the successful passage in the Senate brought the bill to the more challenging environment of the House where the legislation was authored by Congresswoman Lois Capps (D, California). Key bipartisan co-sponsors also included Dr. Andy Harris (R, Maryland) and Congresswoman Shirley Lee (D, California). One of the hurdles to move the bill through the House was to secure majority party leadership and this juncture is precisely where the AST was able to contribute significantly to the process. The AST worked directly with key health care committee leaders to ensure bipartisan support to carry the legislation through the House.

Let me clear here that the HOPE Act was not conceived by the AST, the ASTS or any of the supportive groups contrary to the dueling press releases I’ve seen in the last day. I have already told the story. But it is when the bill faced the House that the AST and the experience and advocacy clout of our government relations team came into action. This story could have easily ended in the House. Though there was still much heavy political lifting to do, the rest is history. Some examples of collaborative efforts include a conference call that the AST hosted with Congressman Michael Burgess, M.D, the AST’s President and Public Policy Chair, as well as other experts from the field including Dr. Peter Stock. This conference call and the subsequent support by Congressman Burgess was critical, as the Congressman serves on the House Energy and Commerce Committee, is Vice Chairman of the Subcommittee on Health, and is also Co-Chair of the Congressional Physician’s Caucus. The President was right to see this as a wonderful example of a win for everyone involved and celebrated this collaborative success with the formal Oval Office ceremony yesterday.

I am inspired by this story of hope at many levels. First, I was able to spend a lot of time with members of the HIV advocacy community as well as Dr. Grant Colfax, Director of the Office of National AIDS Policy. For them this was another important step in removing the stigma of being HIV positive and improving their access to health care. Their emotional response to the moment was very real and deep, reminding me of the personal side of medicine as well as health policy that is always present but sometimes forgotten in the moment. Second, the story illustrates how a few clear thinking people can recognize a good idea and bring it all the way to the White House by engaging the right groups and working within our democratic system to enact a new law. And this is a win for all the patients waiting on the list today as it is estimated to increase organs available by about 500 a year when fully implemented. But this could not have happened without all the collaboration from many different parties. We all know the really big things that we as the AST will continue to tirelessly work to achieve: passage of the Immuno Bill, increasing NIH funding and supporting a rational approach to health care reform. But this day leaves me to ask all of you to consider what other “good small idea” that makes such perfect sense and will have real impact is waiting to be advanced now. We can do this.

(1) Boyarsky, B.J. et al. Am. J. Transplant. 11, 1209-1217, 2011.
(2) Reardon, S. Nature News, Nov. 13, 2013.