Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 594) to reauthorize and extend the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008, as amended.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and insert extraneous materials in the Record on the bill.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, thank you for the recognition to discuss this bipartisan, bicameral legislation that was introduced with Mr. Engel of New York, H.R. 594, the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014, or the MD CARE Act.

H.R. 594 has 113 bipartisan cosponsors. This bill makes targeted updates and improvements to legislation first passed by Congress in 2001 and then reauthorized in 2008. In each instance, these bills, including H.R. 594, have passed both subcommittee and full committee on voice votes and passed overwhelmingly on the floor under suspension, a trend I hope we can continue today.

Mr. Speaker, this legislation is supported by the totality of the muscular dystrophy community with over 20 organizations writing letters of support, including the Muscular Dystrophy Association and the Parent Project Muscular Dystrophy.

In short, the underlying law is a success story. Since its enactment, this law has successfully targeted limited Federal resources to improve clinical care across the muscular dystrophies.

Muscular dystrophy is not a single disease. It is a group of genetic disorders characterized by progressive weakness and the loss of voluntary muscles that control movement.

Muscular dystrophy affects hundreds of thousands of children and adults throughout the United States and worldwide. Some forms of muscular dystrophy are seen in infancy or childhood, while others may not appear until adulthood. The extent of muscle weakness, as well as rate of progression, varies based on where among a spectrum of muscular dystrophies a patient falls.

Since 2001, this law has successfully changed the lives of families impacted

by all forms of muscular dystrophy. It has coordinated and focused Federal biomedical research on nine forms of muscular dystrophy, developed epidemiologic data, and created patient care guidelines.

Here is the good news: it has made a real difference. Since 2001, there have been 67 clinical trials of drugs or therapies for muscular dystrophy, and many can be traced to the basic research efforts stemming from this law.

In Duchenne muscular dystrophy alone, children are living 10 years longer, and many are now entering young adulthood. However, as we often heard, sometimes the law does not keep pace with science and medicine.

For example, when the original law was written, those children who are now going into adulthood would not have been able to look forward to such a favorable timeline. It does not make sense that we have developed care guidelines that have helped these patients live longer and then stop when they turn 18. This bill will address these issues with small, targeted updates to current law.

Mr. Speaker, let me be very clear about this. This bill creates no new programs, this bill creates no increases of authorizations of appropriations, nor does it create additional authorizations of appropriations. It simply proposes a small set of improvements intended to ensure that the program is focusing on the most critical areas that funding being provided today reflects current scientific and medical knowledge.

The bill is fiscally responsible because it makes the needed update in law to ensure that any money that is spent is not held back by an outdated statute.

I would like to thank Chairmen Upton and Pitts, as well as Ranking Members Waxman and Pallone for their help. I also want to thank the staff on both sides of the dais in the committee and the Capitol for their work in getting this bill to this point.

Specifically, I want to thank Clay Alspach, Katie Novaria, and Brenda Destro with the Energy and Commerce majority, and Hannah Green with the minority; from Mr. Engel's staff, Mark Iozzi and Heidi Ross, who negotiated with my staff in good faith from day one; and on my staff, I particularly want to thank my deputy chief of staff J.P. Paluskiewicz who led negotiations, as well as Katie Allen and my former staffer, Sarah Johnson.

This bill is bipartisan. It has a history of consensus. It is fiscally responsible and will benefit all Americans suffering from muscular dystrophy.

I urge everyone to support it, and I reserve the balance of my time.

Mr. Speaker, I yield 5 minutes to the gentleman from Michigan (Mr. Upton), chairman of the full committee.

Mr. Speaker, let me close by saying this is a good bill, and I urge all Members to support it.

I yield back the balance of my time.

Mr. Speaker, I rise in strong support of H.R. 594, the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments, and I yield myself such time as I may consume.

Mr. Speaker, I worked with the gentleman from Texas, Dr. Burgess, to introduce this bill, and I would personally like to thank him for his hard work and partnership developing the legislation and bringing it through the Energy and Commerce Committee.

I would also like to thank our colleagues, Representatives Waxman, Pallone, Pitts, and Upton, for their support and effort to get this bill here today.

Mr. Speaker, the MD CARE Act has always enjoyed full bipartisan support. Congress first approved it in 2001, we updated it in 2008, and we are doing the same now. I am pleased to see that this bipartisan tradition remains strong as we continue the fight against muscular dystrophy by taking up this legislation today.

As I am sure many of my colleagues already know and as Dr. Burgess pointed out, muscular dystrophy is not a single disease, but a spectrum of genetic disorders resulting from progressive muscle weakness and degeneration.

Hundreds of thousands of children and adults currently suffer from various forms of muscular dystrophy in the United States and around the world.

Although there is still no cure, the MD CARE Act has played a critical role in improving the lives of those suffering from these lethal disorders. The MD CARE Act has successfully coordinated and focused biomedical research, established clinical care standards, improved data collection, and helped generate more than 65 clinical trials, more than 30 of which are still ongoing.

As a direct result of this law, the lifespan of the average American living with Duchenne muscular dystrophy--the most common form of muscular dystrophy in children--has increased by a full 10 years. That is a statistic of which we can be proud. This progress is substantial, and the law needs to be updated to reflect these developments.

As people live longer, their needs evolve. The legislation we are considering today responds to the changing needs of muscular dystrophy patients without requiring any additional authorization of appropriations. It will make targeted updates to the MD CARE Act, bringing our programs in line with the scientific advancements we have made since 2008 when the law was last updated.

The bill allows the Director of the National Institutes of Health to expand and intensify programs targeted at the nine most common forms of muscular dystrophy. It also enhances research at the Wellstone Centers of Excellence, strengthens the Muscular Dystrophy Coordinating Committee, updates data collection, and increases awareness of treatment options among medical professionals.

This bill is supported by 113 bipartisan cosponsors, and it has the full backing of the muscular dystrophy community. Passing H.R. 594 will make a huge difference in the lives of all those affected by muscular dystrophy. I urge my colleagues to give it their full support.

I want to conclude by thanking majority and minority staff, which Dr. Burgess mentioned, and I once again thank him for his partnership on this bill.

I yield back the balance of my time.

Mr. Speaker, I rise this afternoon in support of yet another very important health bill advanced by our Energy and Commerce Committee, H.R. 594, the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014, or the MD CARE Act. The bill again demonstrates the continued bipartisan achievements of our committee, and particularly of the Health Subcommittee which has a proven track record of getting solutions put into law that have a profound, positive effect on Americans all across the country.

Muscular dystrophy, it is a complex group of diseases that affects the mobility and life expectancy of so many Americans. Current treatments can alleviate symptoms of the muscular dystrophies like Duchenne and slow muscle deterioration, but there is no treatment to reverse it. It is very sad. Even with the progress made by researchers, obviously a lot of work remains.

This legislation is going to help us find the answers to these diseases. The bill ensures the continuation of critical research at the NIH and updates language in the Public Health Service Act to reflect the latest scientific advances. In addition, the Muscular Dystrophy Coordinating Committee of HHS is going to be strengthened to accelerate the understanding of the impact of muscular dystrophy on patients; and, more importantly, it is going to work to find ways to expedite the approval of emerging therapies that will hopefully some day lead to a cure.

I want to particularly thank Dr. Burgess and Eliot Engel for their leadership on this bill, and also Chairman Pitts and Ranking Members Waxman and Pallone.

I have to say that this is now the 62nd bill that our committee will have passed out of full committee that will pass on the House floor. We have than more a dozen bipartisan committee bills, public health bills that have already been signed into law. We hope this will be one of those as we advance this bill, as well as the Sunscreen Innovation Act, which we just passed a few minutes ago.

I know that this Congress can be remembered as the public health Congress, and I urge my colleagues to support this important legislation which passed by a voice vote unanimously in our committee. It sends a strong signal

to those individuals and their families impacted by muscular dystrophy that Congress--yes, we are--is committed to finding a cure. We will find the resources to do this. This legislation is yet another step, and I urge my colleagues to vote ``yes.''

Mr. Speaker, I want to express my support for H.R. 594, the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Amendments of 2014.

The Centers for Disease Control and Prevention and the National Institutes of Health oversee a number of research, surveillance, and educational efforts involving muscular dystrophy.

H.R. 594 will build upon the federal government's current activities regarding muscular dystrophy. Scientific advances have extended the lives of individuals living with forms of muscular dystrophy--like Duchenne. Today's legislation will help better incorporate the needs of adults with muscular dystrophy into current work in this area.

Congressman Engel and Congressman Burgess should be recognized for their leadership on this issue. I would also like to thank Chairman Upton, Chairman Pitts, Ranking Member Pallone, and all of our staff for their work in advancing this bill through the Energy and Commerce Committee.

I support H.R. 594 and urge my colleagues to do the same.

Mr. President, I ask unanimous consent that the Senate proceed to the immediate consideration of Calendar No. 529, H.R. 594.

Mr. President, I ask unanimous consent that the bill be read a third time and passed; and the motion to reconsider be considered made and laid upon the table with no intervening action or debate.