Caroline Pryce Walker Conquer Childhood Cancer Act of 2008

Mr. President, on behalf of Senator Jack Reed and myself, I ask unanimous consent the Senate proceed to the immediate consideration of H.R. 1553, the Caroline Pryce Walker Conquered Childhood Cancer Act, which was received from the House, the bill be read three times and passed, the motion to reconsider be laid upon the table with no intervening action or debate.

Mr. President, before he leaves the floor--and I know we have colleagues who are waiting. I will not speak long--I want to express my appreciation to the Senator from Oklahoma for the judgment he has made in letting Senator Reed's bill pass tonight. I know the Senator from Oklahoma cares very deeply about the health care of our young people. He and I served on the health subcommittee in the other body. We can have debates about the merits of specific ways to address health issues. I share the view of the Senator from Oklahoma with respect to making sure there is not a meddling by politicians in scientific matters. But tonight, on this legislation, legislation that has passed the other body 416 to 0, the judgment that has been made by the Senator from Oklahoma is in the interests of all of the youngsters of our country who are suffering so greatly, and their families.

Like the Senator from Oklahoma, I have sat with them as well, with constituents. I just want to express my appreciation that the Conquer Childhood Cancer Act introduced by my colleague, Senator Reed, is going to pass tonight. This legislation would provide critical resources for the treatment, prevention, and cure of childhood cancer.

We had a victim of childhood cancer in my home State, Jenessa Boey Byers. She passed away from cancer last December, and she was only 8. She battled cancer, not once but twice. She beat her cancer back into remission. She lost that second battle with cancer, but it never really beat her.

I will remember always, going to see her in the hospital. What she said to me is that she was a warrior in the

fight against cancer and that she was going to stand up for all of the other youngsters. She was a well-known advocate. She asked me to support Senator Reed's legislation, and I am very proud to do it. In fact, she said to me at one point:

If you sponsor my legislation, you will be my hero.

The fact is, the real heroes of this legislation are these youngsters who have suffered, and suffered so greatly. So the decision made by the Senator from Oklahoma tonight is one that is going to benefit so many families in our country.

I want to pay particular tribute to Senator Reed. He could not be here for the unanimous consent, but Senator Reed has prosecuted this cause for months and months, working with the other body, working here with colleagues. So full credit for this cause goes to Senator Jack Reed who is helping so many of our youngsters afflicted by cancer.

I wish to make one other quick comment. I know colleagues are waiting. I wanted to make this comment with respect to health care, because two of my allies in this health care cause, Senators Landrieu and Crapo, are on the floor. There is special significance about the two of them being here tonight for these additional comments on health. What we have seen again in the last few days is one of the worst positions in our country to be in, to be in your late 50s and laid off from work without health care. If you are laid off in your late 50s, let's say you are laid off at 56, 57, like a lot of these workers we have been reading about in the Midwest who had big layoffs in GM, for example, you go out into a broken individual insurance market. What the distinguished Senator from Louisiana, Ms. Landrieu, and the distinguished Senator from Idaho, Mr. Crapo, and I are trying to do--we are part of a group of 16 in the Senate, 8 on the Democratic side, 8 on the Republican side--is to help all those people in their late 50s who are being laid off.

In fact, under our legislation, the Healthy Americans Act, those people would not go out into a broken individual insurance market. If you are 57, 58, for example, and you are laid off in Louisiana or Idaho, under our legislation today, you can get discriminated against if you have a preexisting condition. What our group has been trying to do, with the leadership of Senators Landrieu and Crapo, is say that is not part of the individual market of the future. You can't be discriminated against under our legislation. So right away we are giving some hope to those older workers who are laid off.

The second thing we do in our group is, we give that laid-off worker who is 56, 57 years old some real tax relief, like she would have gotten through her employer if she still had her job. The irony is, if you are laid off, for example, and you are 57, 58 in the State of Louisiana, if you have some high flying CEO, they have an employer health package, and they get a write-off. But you don't get a write-off if you are a laid-off worker in your late 50s. What we do in our legislation is help those people as well.

I will be talking more about what it is like in this country to be in your late 50s, years away from being able to get Medicare, and going out into the broken individual insurance market. I would have talked a bit longer, but colleagues have been waiting. I thought it was particularly appropriate to bring this up tonight because Senators Landrieu and Crapo have joined Senator Bennett and me in this group of 16 whom I believe tonight, when Americans have read those articles about the GM retirees getting clobbered and losing their coverage, they ought to know there is a bipartisan group of us here in the Senate that is committed to giving those people a fair shake and committed to giving them new hope. They would have, under our legislation, under what Senators Landrieu and Crapo and I are working on, a legal guarantee to high quality, affordable coverage, unlike some of those retirees from GM. They would have a safety net.

This has been an important night in health care. First because Senator Reed's legislation to help youngsters afflicted with cancer has passed, and it honors the memory of one of my constituents from Oregon and, second, I thought it was particularly appropriate with Senators Landrieu and Crapo here tonight, with millions of Americans who are in their late 50s worried that they are going to lose their health coverage, to know a group of us on a bipartisan basis have legislation that would provide real relief, a legal guarantee to high quality, affordable coverage when they lose their job through no fault of their own.

I thank my colleagues, Senators Landrieu and Crapo, with particular thanks to Senator Reed, for passage of his legislation to help youngsters afflicted with cancer.

I yield the floor.

I thank the gentleman for yielding very much.

Madam Speaker, I believe today we stand on the cusp of something very significant, and that is the chance to spare families forevermore from having to hear the words ``your child has cancer.'' Today, after many hard years of work by staff here on Capitol Hill, by people in the administration, by grassroots groups across the country, by concerned citizens everywhere, we will consider a bill that will make a historic difference in the lives of more than 12,000 children a year who are diagnosed with cancer.

I would like to thank my colleagues, especially Chairman Dingell and Chairman Pallone, Ranking Members Barton and Deal, my cosponsor Chris Van Hollen who just spoke, a great supporter on my side of the aisle, Mike McCaul, and for a new friend that I have found here in Congress, Joe Sestak, who also knows the issue far too well and who also has heard the words ``your child has cancer.''

Madam Speaker, some of us that I have just named are rivals of the highest degree and the strongest of adversaries when it comes to politics and even some issues. But as for the issue of cancer, we have a unique way of transcending the political and tapping into what is uniquely human among us.

I would also like to thank my friend Darlene Hooley and my very dear friend Lois Capps, also on the committee, and also Mrs. Capps has been one of those sad Members of the club who has heard the words, ``Your daughter has cancer.'' I want to thank them for their thoughtfulness, that they suggested that this bill be renamed in honor of my daughter, Caroline, who as it was mentioned lost her courageous battle with cancer 9 years ago.

In the years that I've been working on this legislation, my friends have been with me every step of the way, as has Caroline, making sure that her little promise to help those other kids that she played with in their fights and so all the kids who come after her won't have to go through what she did. Madam Speaker, Caroline would have graduated from high school last Friday. This is our graduation gift to her.

So, yes, this bill is very personal to me, and it should be very personal to everyone because there is not a single American who hasn't been touched by this dreadful disease called cancer. Unfortunately, there are far, far too many, and we must know that a Nation with our resources or a Nation with our scientists, our committed doctors and oncologists and our fighting spirit, we can and we will do more to defeat this disease that attacks our children and put an end to their suffering.

You know, cancer is no longer the mystery that it once was. The scientific and medical communities continue to crash through barriers every day to unlock cancer's deadly secrets. We will continue to cut this opponent down to size, but we continue to lose one in every five children diagnosed. Each and every school day, 46 children, more than two classrooms, will be diagnosed with cancer; 2,300 of them will die from it. We can and we will do better.

The bill before us today provides the lifeblood necessary to continue our advancements in pediatric cancer research, $30 million annually over 5 years. It is a very small price to pay for the life years that will be saved.

This bill creates a national database on childhood cancers to help researchers detect trends in these diseases, variables like genetics, geography and environmental influences that may be sources that are possibly causing these diseases which we can't figure out.

The bill provides for education and information services to patients and families to ensure that they are aware of and have access to appropriate clinical treatment, as well as the array of needed support services. Madam Speaker, nothing equates to the fear and uncertainty felt when a parent hears a cancer diagnosis for their child. This will give them somewhere to turn.

What this bill will help us learn about pediatric cancer will likely yield breakthroughs in our understanding of other diseases and treatments. And pediatric cancer research is leading the way in clinical advancements.

You see, last year, roughly 1.4 million people were diagnosed with cancer; yet, a measly 3 percent of those patients were enrolled in clinical trials. Now, by contrast, clinical trials are now part of the standard of care for pediatric cancer, and the vast majority of children diagnosed are enrolled in these trials.

And we're learning so much because of these enrollments. We're learning more about the trials than we thought possible. We're learning how to successfully handle survivorship issues. We're helping these kids live longer, and more importantly, we're inching closer to a cure.

For the past few weeks, hundreds of thousands of people filled the streets of our Nation's cities in the National Race for the Cure. It is an emotional, humbling and awe-inspiring experience to bear witness to this sea of pink humanity, women, men, and children from all walks of life, united by the common goal of defeating breast cancer.

Today, with this bill, we have a chance to capture that same spirit and resolve, to reclaim the many hundreds of life years lost, to save countless families the grief and despair of this sickness and death of a little one, and to one day look back upon this moment as a true catalyst that led to the end of childhood cancer.

I urge all my colleagues to support this legislation, and I urge them to urge our Senate colleagues to support this legislation, as we look forward to seeing the end of this plague upon our children.

Madam Speaker, I would like to thank my colleague Ms. Pryce for introducing H.R. 1553, the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. As a co-sponsor of the bill, I am proud to support this measure.

We all know that cancer is a devastating disease that affects untold numbers of Americans each year. While it is often easy to think of cancer as only affecting adults, the measure before us today is a reminder that cancer is in fact the leading cause of disease-related death in children in the United States, claiming the lives some 2,300 children annually. It is therefore fitting that this bill has been named in honor of Caroline Pryce Walker, the late daughter of our colleague Deborah Pryce, who lost her battle against neuroblastoma in 1999 at nine years of age.

As many of us know, there are numerous institutions throughout the country which are dedicated to providing better care and research for childhood cancer patients. I am particularly proud to have several participating institutions located in my home state of California, including Cure Search, which has a research center located in the city of Arcadia, as well as the City of Hope, which is located in the city of Duarte. These institutions work under an unincorporated, nationwide network known as the Children's Oncology Group, which is comprised of over 200 childhood cancer treatment and research centers that collaborate on clinical trials and translational research of pediatric cancer.

The work of Cure Search and the City of Hope, along with hundreds of other institutions across the county, has helped to make significant advances in the treatment of childhood cancer. When the National Cancer Institute founded the first pediatric cooperatives in 1955, the childhood cancer survival rate was a mere ten percent. Thanks to the collaborative work being performed through the Children's Oncology Group, that number has risen to seventy five percent today, and it is because of these joint efforts that new trends and therapies in childhood cancer are discovered each year.

However, in recent years, treating cancer has become just one aspect of addressing the

health needs of children afflicted with the disease. The Children's Oncology Group has been at the forefront of raising awareness about the challenges that exist in the post-treatment, cancer survivorship period. For example, few may know that two-thirds of the children who survive cancer will ultimately experience at least one, if not more, long-term health issue as a result of their treatment. These so called ``late-effects'' pose substantial health challenges for those who are fortunate enough to survive childhood cancer as well as for the doctors who treat them.

To that end, the Children's Oncology Group has taken an important lead in focusing greater attention on long-term complications that arise from radiation and other therapies and has worked to study the long-term care needs of childhood cancer survivors. In fact, one of my constituents, Dr. Smita Bhatia, a resident of Arcadia who works at the City of Hope, served as the Chair of the Late Effects Committee at the Children's Oncology Group for eight years and was instrumental in establishing national guidelines for survivorship care. Today, these guidelines are being used to help equip survivors with the tools they need to identify the side-effects of specific cancer treatments and remain healthy as they mature into adulthood.

The measure before us today will help advance our understanding of childhood cancer by addressing the need to obtain more accurate data to study trends and evaluate the most effective courses of treatment. While approximately 12,500 children in the United States are diagnosed with cancer each year, researchers have experienced great difficulties in pinpointing the exact causes of childhood cancer. Because of its random occurrence in children across the United States, it has been nearly impossible to acquire statistically significant data on the causes of and effective treatments for childhood cancer. The work of Cure Search and the City of Hope will be amplified by the underlying bill, which authorizes the creation of a national childhood cancer research database to provide better statistics on the occurrence of childhood cancer as well as the most effective treatments for patients. Building this database is critical to ensuring that those who are responsible for treating childhood cancer have the very best data available to them.

Additionally, the bill authorizes $30 million to enhance and expand biomedical research programs that allow scientists to study how tumors form and spread as well as the impact that genetics can have on the likelihood of cancer and relapses of the disease. The bill also will provide better educational and informational services for childhood cancer patients and their families to ensure that they have access to appropriate clinical treatments and support services.

H.R. 1553, Caroline Pryce Walker Conquer Childhood Cancer Act, affirms a long-term commitment to providing a cure to childhood cancer and also will ensure that doctors and patients alike are provided with the best information to make important medical decisions in the near- term. As we seek to address the needs of childhood cancer patients, survivors and their families, I urge my colleagues to recognize the importance of the research that will be authorized by H.R. 1553 and support this bill.

Madam Speaker, I move to suspend the rules and pass the bill (H.R. 1553) to amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers, as amended.

Madam Speaker, I ask unanimous consent that all Members may have 5 legislative days to revise and extend their remarks and include extraneous material on the bill under consideration.

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

Madam Speaker, we're here today to consider H.R. 1553, the Caroline Pryce Walker Cancer Act of 2008.

Between infancy and 15 years of age, cancer is the leading cause of death by disease among children in the United States. In 2007, approximately 10,000 new cases of pediatric cancer were diagnosed in children ages 0 to 14 years.

Although the incidents of invasive cancer has increased slightly over the past 30 years, mortality has declined dramatically for many childhood cancers. Despite these advances, treatments for some childhood cancers are inadequate. Negative effects resulting from current pediatric cancer therapies indicate a need to strengthen Federal support for activities leading to an enhanced understanding of childhood cancers and treatments that are less toxic and more effective.

H.R. 1553 would strengthen the Federal investment in pediatric cancer research and reassert Congress's commitment to conquering childhood cancer. This legislation directs the Secretary of Health and Human Services to continue to enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer. Furthermore, this legislation directs HHS and the Centers for Disease Control and Prevention to enhance and expand infrastructure to track the epidemiology of pediatric cancer into a comprehensive nationwide registry of actual occurrences of pediatric cancer.

I want to thank my colleagues on the Energy and Commerce Committee for working together in a bipartisan fashion to get this important legislation to the floor today. I would also like to commend, in particular, Representative Chris Van Hollen and also Representative Deborah Pryce, whose diligent work and commitment to this issue are the reason we're here today.

This legislation, Madam Speaker, is named in memory of Representative Pryce's 9-year-old daughter Caroline who tragically lost her valiant battle against a rare form of cancer, neuroblastoma, on September 4, 1999. I can't think of a more fitting tribute to Caroline Pryce Walker than to see her mother's legislation overwhelmingly pass the House floor today.

I encourage all of my colleagues in the support of this bill.

I reserve the balance of my time.

Madam Speaker, I would yield 4 minutes to the lead Democratic sponsor of the bill, the gentleman from Maryland (Mr. Van Hollen).

Madam Speaker, if I could yield the gentleman an additional minute.

Madam Speaker, I would yield 3 minutes to the gentlewoman from California (Mrs. Capps).

Madam Speaker, I yield 3 minutes to the gentleman from Pennsylvania (Mr. Sestak).

Madam Speaker, I yield 1 minute to the gentlewoman from Ohio (Ms. Kaptur).

Madam Speaker, I yield an additional minute to the gentlewoman.

Madam Speaker, I yield 2 minutes to the gentlewoman from Texas (Ms. Jackson-Lee).

(Ms. JACKSON-LEE of Texas asked and was given permission to revise and extend her remarks.)

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

Madam Speaker, I would like to urge all my colleagues to support this bill overwhelmingly. And I want to make a commitment to Congresswoman Pryce, as she had urged, that we get this over to the Senate and get it passed as quickly as possible so we can send it to the President.

I know that this is in memory of her daughter Caroline, and all the different things that have been said here today is certainly a tribute to you and all that you have done here in the House of Representatives.

I just want to say, I've watched you over the years. I know you were the chairwoman of the Republican Conference, and as you said, we were often battling. But in all of that, Congresswoman Pryce was always a lady and really someone who was able to get along with people on both sides of the aisle and work towards good government goals.

So this bill really is a tribute to her in memory of her daughter. And I just want to thank her again for all that she has done.

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

I thank my colleague.

Madam Speaker, I rise in strong support of this bill, the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, and I want to first and foremost thank my colleague, Deborah Pryce, for her leadership and commitment on this very important issue that affects so many children and families around our Nation. We're all very grateful to her for working to prevent other people and other families from facing the same tragic loss that she and her family experienced with the loss of a child, and I'm honored to have worked with her on this bipartisan piece of legislation.

I also want to thank Chairman Dingell, Chairman Pallone, Ranking Members Barton and Deal and their staffs for working to bring this legislation to the floor today and for their commitment on this very important issue.

I think that the title of this bill is a fitting tribute not only to Deborah Pryce's daughter, Caroline Pryce Walker, but also to the other millions of children who have courageously fought pediatric cancer and those who are bravely fighting pediatric cancer today as we speak on this floor.

I have had the opportunity to meet with many of those children and their families who are struggling with childhood cancer. One of them, Matthew Grossman, was diagnosed at the age of 13 with a very rare brain tumor. Before his diagnosis, he was a soccer player, a swimmer, a talented young musician from Bethesda, Maryland. Matthew underwent 7 months of chemotherapy, brain surgery, 6 weeks of daily radiation to the brain and spine, and two bone marrow transplants.

This brave young man has been in full remission since January 2006. He went back to school and rejoined his class, despite having been out of school for a year and a half. He recently celebrated his 17th birthday and continues to play guitar, perform in a band, and sing in his school's choir.

Matthew is one story out of thousands. Unfortunately, there are many children who are not as fortunate as Matthew. Cancer remains the number one killer of children under the age of 15 who die from disease in this country. Pediatric cancer, including brain tumors, comes in many variations. Each year there are about 12,000 new cases of pediatric cancer. And while the incidents of pediatric cancer has increased, the causes are largely unknown.

Thanks to past funding in childhood cancer research, we know that 78 percent of childhood cancer patients overall are now able to survive the disease. Forty years ago, it was a much different story. Cure rates for children with cancer was lower than 10 percent. This shows that biomedical research and funding that we've been able to do has saved lives, and it's also why we're here today to say we need to finish the job and continue the commitment because currently, the NIH has not received the funds it needs.

We know that the President's proposed budget this year has once again, unfortunately, been flat funded for NIH. Since the doubling of the NIH budget in the year 2003, that funding has not kept pace with biomedical inflation, and that has impeded our ability to delay and do the research we need into the onset of many diseases. If we fail to invest in innovative research at NIH, we will forfeit the opportunities to make ground-breaking, life-saving work to save lives.

The NCI currently spends approximately $170 million a year on pediatric cancer research. Much of this now goes to laboratory and pre- clinical testing. We also need to do the important work to invest in clinical trials. An NCI peer review group of scientists in 2002 recognized this and recommended $54 million in funding for pediatric cancer clinical trials. That level was never funded.

Madam Speaker, I thank the chairman.

That level was never fully funded, and since then, this funding has been cut.

Because Federal funding for pediatric research continues to drop, many critical trials have been put at risk. As many as 20 studies has been put on hold and enrollment in new clinical trials has decreased by more than 400 children. This is taking us in the wrong direction.

This act will enhance and expand pediatric cancer research activities at the NIH, establish a pediatric cancer registry, and increase educational informational and support services to patients and families affected by childhood cancer.

Madam Speaker, we can do better in our fight against pediatric cancer. Let's help give our children and their families the future they so deserve by passing this bill. I urge my colleagues, and once again, thank our colleague, Deborah Pryce, for leading by example in this very important area.