21st Century Cures Act

Floor Speech

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Mr. Chairman, my father-in-law, Lino Lipinsky de Orlov Senior, was a true renaissance man. During World War II, he was a member of the Italian resistance, whose family sheltered Jews and Allied solders in their apartment. An artist by training, he made his way to this country with letters of introduction and became a world-renowned etcher and museum curator.

Most importantly, Lino Senior was a wonderful person. Kind to all and beloved by his family and friends, he reveled in life's small pleasures, creating whimsical drawings for his loved one's birthday cards and recounting tales of Italian youth, from idyllic summers on Capri to his escapades in the Resistance.

So, Mr. Chairman, it was more than a tragedy when in 1988, we lost Lino Senior to ALS, or Lou Gehrig's disease. ALS is a debilitating disease that weakens and atrophies muscles, leaving those with the disease the inability to perform even the most mundane tasks, much less the ability to create great art.

Last week, at Craig Rehabilitation Hospital in Denver, I met a young man stricken with ALS who was already confined to a wheelchair. He was there to support our bill, the 21st Century Cures. But what struck me was, in the 25-plus years since we lost Lino Senior, there has been no cure. There has been no real treatment for patients who receive this diagnosis.

ALS has been well known and thoroughly evaluated for a long time--after all, it gets its nickname from one of the most popular athletes of the 1920s--but we have made virtually no progress in finding a cure. This is not for lack of trying.

The ALS community is incredibly active. Plenty of us in this Chamber and people all around the country took part in the ice bucket challenge last year. I thank Fred Upton for a lot of things, but maybe the thing I should thank Fred for the most was giving me the opportunity to take the ice bucket challenge last year.

Thanks so much, Fred.

There is real hope, however, though, for ALS and for thousands of diseases for which we lack treatments and cures. Thanks to the mapping of the human genome and technological advances like electronic health records, researchers are poised to discover new breakthroughs that promise dramatic improvements for patients.

The bill before us today, 21st Century Cures, will ensure that the great promise of these developments is harnessed by our Nation's premiere research facilities, the National Institutes of Health, and the Food and Drug Administration.

21st Century Cures is a comprehensive bill which will encourage the development of new treatments and cures. It starts by making a major investment in research with the creation of a 5-year, $8.75 billion innovation fund at the NIH. We create this fund to give the leaders the chance to plan strategically and to give longer term support to promising research projects.

Ultimately, these investments will help produce new discoveries in the lab.

Cures then helps to take those discoveries and turn them into treatments for patients. We begin by modernizing clinical trials, including new efforts to ensure diverse populations participate in these research projects.

We allow centralized approval for clinical trials and adaptive trial designs to eliminate wasteful duplication of effort.

We include the patient perspective into every facet of discovering, developing, and delivering treatments, so that a conceptual breakthrough can be applied in practical ways.

We encourage new disease registries to pool information and help researchers drill into the data to find the unique and sometimes subtle needs of patient populations.

We help new scientists begin their careers in research so that great minds can tackle our biomedical challenges, and we will unlock the potential of modern technologies by facilitating safe data sharing and using digital medicine. We include many of the proposals in President Obama's precision medicine initiative as part of this.

With this bill, Mr. Chairman, we are going to make sure that in the 21st century, the pace of breakthroughs, treatments, and cures accelerates to meet the challenges of our time. A healthier world is coming, and I look forward to getting there as fast as we all can.

You know, we couldn't have done this without this team, and I want to take my minute to thank so many people who have helped with this. Ranking Member Pallone's staff: Jeff, Tiffany, Kim, Arielle, Rachel, Eric, Waverly; Ranking Member Green's staff: Kristen; Chairman Upton's staff: Gary, Clay, John, Paul, Carly, Katie, Adrianna, Robert, Josh, Joan, Bits, Mark, Sean, Noelle, Tom, Leighton--they are the majority; they have a lot more staff than we do--Chairman Pitts' staff: Heidi; Representative Burgess' staff: JP and Daniel; my unbelievable and intrepid staff: Rachel, Elizabeth, Matt, Eleanor, Diana Gambrel, Cole; my wonderful chief of staff who has been with me for 19 years; leg counsel.

Most of all, I want to thank my partner and compatriot, Fred Upton. You have been fabulous, and I look forward to taking this over the finish line with you.

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