Childhood Cancer STAR Act

Mr. Speaker, I move to suspend the rules and pass the bill

(S. 292) to maximize discovery, and accelerate development and availability, of promising childhood cancer treatments, and for other purposes.

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 into the Record on the bill.

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

Mr. Speaker, today, we are here to debate the Childhood Cancer Survivorship, Treatment, Access, and Research Act, also known as the Childhood Cancer STAR Act.

Each of us knows someone who has suffered from cancer, whether it is a family member, friend, patient, or loved one. It is especially heart- wrenching to watch children go through a cancer diagnosis and cancer treatment.

The bill we are considering today is for our children, the future of our Nation. I would like to acknowledge and thank my fellow Texan, Congressman Michael McCaul, for leading our work to deliver hope to America's youngest cancer patients.

Congress has done remarkable work to pass legislation such as the 21st Century Cures Act, which provided Americans with great hope that increased investment in biomedical research would lead to treatment and even cures for our most devastating diseases.

The 21st Century Cures Act authorized over $4.5 billion in new funding for the National Institutes of Health, including nearly $2 billion for the Cancer Moonshot.

The Childhood Cancer STAR Act builds upon the mission of 21st Century Cures but focuses on empowering the National Institutes of Health and the Centers for Disease Control and Prevention to increase the amount of research and surveillance for cancer in children, adolescents, and young adults.

Groundbreaking discoveries rely on robust and reliable investment in research, and this requires robust and reliable dollars for research.

This bill authorizes $30 million a year through fiscal year 2023 for the National Childhood Cancer Registry, which will provide grant funding for the purpose of collecting information to better understand the epidemiology of cancer in children, adolescents, and young adults.

The bill also authorizes the National Cancer Institute at the National Institutes of Health to make awards that will support childhood cancer biorepositories, giving physicians and researchers tools to better understand these diseases.

Mr. Speaker, it is vital that physicians and their teams can provide comprehensive and coordinated care for pediatric cancer patients. The bill allows the Secretary of the Department of Health and Human Services to make grants to establish pilot programs to develop, study, or evaluate model systems to improve the quality and the efficiency of care for childhood cancer survivors.

It also provides for greater efficiency and coordination of care for those survivors as they transition into adulthood and for the Secretary to work with experts to identify best practices.

Similarly, this bill gives the National Institutes of Health Director the authority to make grants to programs that conduct or support research relating to pediatric cancer survivors.

As I have said, this legislation is for our children. It is for the families that are building our Nation's future. If we can ensure that these young patients receive treatment and cures for childhood cancer, they may grow up to become biomedical researchers who will find the next generation of cures; they may write the next great American classic; they may become prima ballerinas, Olympic athletes, or all of the above.

This legislation is for kids like Sadie. Sadie was diagnosed with ALL, acute lymphoblastic leukemia, on February 25, 2015. She was just 7 years old at the time. This young north Texan fought through infections, blood transfusions, and rare side effects. She missed out on second grade and she missed out on third grade as she underwent weekly chemotherapy sessions.

Today, it is my great joy to share that Sadie beat the odds and Sadie survived leukemia. She received her last chemotherapy treatment May 26, 2017. Now, at 10 years old, Sadie is able to live the life of a normal kid.

I would like to thank Sadie and her family for their willingness to share their story and for their advocacy in support of this important legislation.

Mr. Speaker, I met Sadie in my office last spring, and I was inspired by her story. She started a nonprofit, the Sadie Keller Foundation, to raise money to help other kids who are facing cancer. Her mission is pretty simple. It is to put a smile on the faces of children fighting cancer all over the country and to remind them to keep fighting.

So, today, I urge Members of Congress to support this important bipartisan legislation. In sending this bill to the President's desk, we will help Sadie achieve her mission of putting a smile on the faces of children fighting cancer. We will provide families across this country with hope for a better tomorrow.

Mr. Speaker, I reserve the balance of my time.

Mr. Speaker, I yield as much time as he may consume to the gentleman from Oregon (Mr. Walden), the chairman of the full committee.

Mr. Speaker, I yield 2 minutes to the gentleman from New Jersey (Mr. Lance), vice chairman of one of our subcommittees.

Mr. Speaker, I yield 5 minutes to the gentleman from Texas (Mr. McCaul), chairman of the House Committee on Homeland Security, fellow Texan, and the principal author of the bill that we have before us today.

Mr. Speaker, I yield 2 minutes to the gentleman from Tennessee (Mr. Roe).

Mr. Speaker, I, too, want to express my strong support for S. 292, the Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2018, Childhood Cancer STAR Act.

And, once again, I want to thank my colleague, the gentleman from Texas (Mr. McCaul), for spearheading this effort.

I urge all my colleagues to support the legislation.

Mr. Speaker, I yield back the balance of my time.

Mr. President, I am pleased to be joined by Senators Capito, Van Hollen, and Isakson in the introduction of the Childhood Cancer Survivorship, Treatment, Access, and Research, STAR, Act of 2017. This legislation is an extension of ongoing bipartisan efforts in the Senate over the past decade to get us closer to the goal of hopefully one day curing cancers in children, adolescents, and young adults. Representatives McCaul, Speier, Kelly, and Butterfield are introducing the companion legislation in the other body.

I first started working on this issue after meeting the Haight family from Warwick, Rhode Island in June of 2004. Nancy and Vincent lost their son, Ben, when he was just nine years old to neuroblastoma, a very aggressive tumor in the brain.

With the strong support of families like the Haights for increased research into the causes of childhood cancers and improved treatment options, I introduced bipartisan legislation that eventually was signed into law in 2008 as the Caroline Pryce Walker Conquer Childhood Cancer Act.

This was an important step. Yet, more work remains. The STAR Act seeks to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing resources for survivors and those impacted by childhood cancer.

If a treatment is working, doctors elsewhere should know immediately. The same should happen if a treatment isn't working, or if other major medical events occur during the course of a particular treatment. It is critical that doctors, nurses, and other providers are able to effectively communicate information about the disease, the treatment process, and what other health and development impacts children can expect to experience with a particular course of treatment.

As such, the STAR Act would reauthorize the Caroline Pryce Walker Conquer Childhood Cancer Act, creating a comprehensive children's cancer biorepository for researchers to use in searching for biospecimens to study and would improve surveillance of childhood cancer cases.

This legislation also includes provisions dealing with issues that arise for survivors of childhood cancer. Unfortunately, even after beating cancer, as many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment; as many as one-fourth experience a late effect that is serious or life- threatening, including second cancers and organ damage.

We must do more to ensure that children survive cancer and any late effects so they can live a long, healthy, and productive life. This legislation would enhance research on the late effects of childhood cancers, improve collaboration among providers so that doctors are better able to care for this population as they age, and establish a new pilot program to begin to explore improved models of care for childhood cancer survivors.

Lastly, this bill would ensure more pediatric expertise at the National Institutes of Health to better leverage the research investment to improve pediatric cancer research by requiring the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and improving childhood health reporting requirements to include pediatric cancer.

Last year, Senator Capito and I were able to get a provision of this bill included in the 21st Century CURES Act, which was signed into law at the end of the year. That provision will provide some clarity for patients and their physicians attempting to access new drugs and therapies from pharmaceutical companies. When a patient has run out of other options, the last thing they and their families need is to spend months being given the run-around trying to access a potential treatment.

I am hopeful that we can build on this momentum. Indeed, it was heartening to see the House of Representatives pass the Childhood Cancer STAR Act as one of its last acts of the 114th Congress by a unanimous vote. While, the Senate was unable to follow suit as time ran out at the end of the year, HELP Committee Chairman Alexander and Ranking Member Murray have committed to working with Senator Capito and me to move the legislation this year.

The Childhood Cancer STAR Act has the support of the American Cancer Society Cancer Action Network, St. Baldrick's Foundation, and Children's Oncology Group, among others. I look forward to our continued work with these stakeholders to build support for the bill and with the HELP Committee to see this bill advance through the legislative process.

Mr. President, I am pleased to be joined by Senators Capito, Van Hollen, and Isakson in the introduction of the Childhood Cancer Survivorship, Treatment, Access, and Research, STAR, Act of 2017. This legislation is an extension of ongoing bipartisan efforts in the Senate over the past decade to get us closer to the goal of hopefully one day curing cancers in children, adolescents, and young adults. Representatives McCaul, Speier, Kelly, and Butterfield are introducing the companion legislation in the other body.

I first started working on this issue after meeting the Haight family from Warwick, Rhode Island in June of 2004. Nancy and Vincent lost their son, Ben, when he was just nine years old to neuroblastoma, a very aggressive tumor in the brain.

With the strong support of families like the Haights for increased research into the causes of childhood cancers and improved treatment options, I introduced bipartisan legislation that eventually was signed into law in 2008 as the Caroline Pryce Walker Conquer Childhood Cancer Act.

This was an important step. Yet, more work remains. The STAR Act seeks to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing resources for survivors and those impacted by childhood cancer.

If a treatment is working, doctors elsewhere should know immediately. The same should happen if a treatment isn't working, or if other major medical events occur during the course of a particular treatment. It is critical that doctors, nurses, and other providers are able to effectively communicate information about the disease, the treatment process, and what other health and development impacts children can expect to experience with a particular course of treatment.

As such, the STAR Act would reauthorize the Caroline Pryce Walker Conquer Childhood Cancer Act, creating a comprehensive children's cancer biorepository for researchers to use in searching for biospecimens to study and would improve surveillance of childhood cancer cases.

This legislation also includes provisions dealing with issues that arise for survivors of childhood cancer. Unfortunately, even after beating cancer, as many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment; as many as one-fourth experience a late effect that is serious or life- threatening, including second cancers and organ damage.

We must do more to ensure that children survive cancer and any late effects so they can live a long, healthy, and productive life. This legislation would enhance research on the late effects of childhood cancers, improve collaboration among providers so that doctors are better able to care for this population as they age, and establish a new pilot program to begin to explore improved models of care for childhood cancer survivors.

Lastly, this bill would ensure more pediatric expertise at the National Institutes of Health to better leverage the research investment to improve pediatric cancer research by requiring the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and improving childhood health reporting requirements to include pediatric cancer.

Last year, Senator Capito and I were able to get a provision of this bill included in the 21st Century CURES Act, which was signed into law at the end of the year. That provision will provide some clarity for patients and their physicians attempting to access new drugs and therapies from pharmaceutical companies. When a patient has run out of other options, the last thing they and their families need is to spend months being given the run-around trying to access a potential treatment.

I am hopeful that we can build on this momentum. Indeed, it was heartening to see the House of Representatives pass the Childhood Cancer STAR Act as one of its last acts of the 114th Congress by a unanimous vote. While, the Senate was unable to follow suit as time ran out at the end of the year, HELP Committee Chairman Alexander and Ranking Member Murray have committed to working with Senator Capito and me to move the legislation this year.

The Childhood Cancer STAR Act has the support of the American Cancer Society Cancer Action Network, St. Baldrick's Foundation, and Children's Oncology Group, among others. I look forward to our continued work with these stakeholders to build support for the bill and with the HELP Committee to see this bill advance through the legislative process.

Mr. Speaker, I want to thank my good friend Dr. Burgess for shepherding this bill through the Energy and Commerce Committee and taking us to the point where we are today on the floor.

Mr. Speaker, I rise in support of this bill, the Childhood Cancer STAR Act. The bill addresses 4 major concerns facing the pediatric cancer community: survivorship, treatment, access, and research.

I was proud to introduce this bill with Ms. Jackie Speier, with G.K. Butterfield, and Mr. Mike Kelly of Pennsylvania. This is the most comprehensive childhood cancer bill ever considered before this House. This bill passed the House in 2016, and I encourage the support of all Members today so we can finally send it to the President's desk for his signature. I am proud to say that today is the day. I know a lot of the advocates have been waiting for this day for quite some time.

Childhood cancer, unfortunately, remains the deadliest killer of our children. At some point we, as a Congress and as a Nation, must say enough is enough. In short, the STAR Act elevates and prioritizes the fight against childhood cancer at the NIH. Specifically, STAR places a pediatric oncologist on the board at the National Cancer Institute, so childhood cancer will now have a voice at the table when funding decisions are made.

It also expands opportunities to childhood cancer research, allowing doctors to better understand and track how cancer develops in children. Finally, we must also address the needs of the nearly 500,000 survivors of childhood cancer. Due to their treatments using chemotherapy, a World War I chemical agent, two-thirds of these survivors will face serious, lifelong medical conditions.

When I think about what this means, I think of my friend Sadie Keller. She is perhaps the strongest person I know. Sadie underwent over 2 years of chemotherapy at the age of 7 after being diagnosed with leukemia. She has been, at her young age, perhaps the most relentless advocate for this cause, this bill here on Capitol Hill, and throughout the childhood cancer community.

I just want to refer to this picture of little Sadie and myself when she was going through remission, on the Speaker's balcony, looking out over The Mall, with a vision towards the future, a future where children will no longer have to go through this disease, looking at the dark clouds but the sunlight coming through. That is what this bill represents is sunlight for the children who have been afflicted with this terrible disease.

While now her cancer is in remission, that does not mean her medical challenges are over. We must do more as a Nation to care for these survivors. To that end, the STAR Act will improve collaboration among providers so doctors are better able to care for survivors as they age.

I want to close by thanking Sadie, but I also want to thank people like Danielle Leach and the Alliance for Childhood Cancer team for their relentless advocacy on the Hill and work on this bill. I also want to thank Nancy Goodman and Kids v. Cancer and the entire childhood cancer advocacy community for standing up and getting us to the point where we are today.

They are the voice of these children. They made this event possible here today. And I want to thank them from the bottom of my heart.

I urge passage of this life-altering piece of legislation.

Mr. President, one of the most important elements of the rule of law is the promise of swift access to the courts, but that promise has been broken in my home State of Arizona. That is because Arizona falls under the jurisdiction of the U.S. Court of Appeals for the Ninth Circuit, a circuit that is both oversized and overworked.

With the jurisdiction encompassing 13 districts spread across nine States and 2 U.S. territories, the Ninth Circuit covers 1 in 5 Americans. It hears roughly 12,000 appeals each year. The next busiest circuit doesn't even hear 9,000, and for the thousands of cases under its consideration, the average turnaround time exceeds 15 months.

Now, if excessive delays weren't bad enough, it turns out the Ninth Circuit is overturned by the Supreme Court 77 percent of the time when the Supreme Court grants cert--77 percent of the time. That is obviously higher than any other court. So not only is the court excruciatingly slow, but in many instances it is simply wrong.

The court, itself, is unusually large. It has 29 authorized judgeships. That is 12 more than the next largest circuit.

The Ninth Circuit is so big that it can't even rehear cases as a whole body, like every other appeals court does. Instead, cases are reheard with limited en banc; these are panels of 11 judges each. That means that only one-third of its judges are deciding law for the entire court--only one-third.

Of the States suffering under the weight of the Ninth Circuit's crushing backlog, Arizona shoulders a uniquely heavy burden. Per capita, Arizona has the busiest Federal docket in the circuit. That puts Arizonans at the back of an already long line just to get their day in court.

As if the deluge of cases continues to fill the Ninth Circuit's docket, the line keeps getting longer and longer if you happen to live in Arizona.

With problems like these, we are left to ask: Is the Ninth Circuit simply too big to succeed? If you are an Arizonan, the answer is unquestionably yes.

Arizonans deserve better, and that is why today I am introducing a bill to break up the Ninth Circuit.

With the support of my colleague from Arizona, John McCain, and the support of Gov. Doug Ducey, I have introduced the Judicial Administration and Improvement Act. This bill would create a new Twelfth Circuit by moving Arizona, as well as Alaska, Idaho, Montana, Nevada, and Washington, out of the Ninth Circuit. Doing so would create two smaller appellate courts where one dysfunctional court stood, all the while establishing stronger local, regional, and cultural ties. This would help alleviate the Ninth Circuit's enormous caseload and ensure a more timely and accurate judicial process for both circuits.

Now, importantly, the bill would also free the new circuit from the Ninth Circuit's precedent. That means States like Arizona would be able to chart their own legal course, consistent with their local needs and traditions.

A fair and functioning judiciary is one of the pillars of our democracy. Geography shouldn't limit a citizen's access to the courts.

The Judicial Administration and Improvement Act will right this wrong by restoring faith in our judicial system and securing the access to Justice that Americans deserve.