MR. REED: Mr. President, I initially wish to make a few comments, and then I will yield to my colleague from Oregon. Today, I rise to honor two young heroes and their families. Ben Haight of Rhode Island and Boey Byers of Oregon were two remarkable young people whose lives were cut short by cancer, but whose hopes were not.
Of course, when a child has cancer, it deeply affects the parents, siblings, friends, and extended family. In fact, a pediatric illness affects the entire family. Even those who don't bear the damage of the illness bear the pressures, the strains, and the frustrations over dealing with the serious illness of a child. These two young children were extraordinary. We mourn their loss and at the same time we celebrate their lives.
Ben Haight was only 4 years old when he was diagnosed with neuroblastoma. He fought valiantly, enduring chemotherapy, two bone marrow transplants, and total body radiation. Ben did not let cancer stop him from living life. I am told he would dictate his treatment schedules to his doctors: "No treatments during science class; have to be out by 3 to go to Cub Scouts, baseball, or soccer."
Even at a young age, Ben knew a lot about what was important in life. He cared about others and wanted to help. He held a bandaid drive at school to donate colorful bandaids to the hospital, which used plain bandaids to save money. Ben knew that patients enjoyed picking out a "cool" bandaid and that this simple pleasure offered them a brief respite from the rigors of their disease.
Ben's cancer went into remission, but after 2 years it came back. The doctors gave him 3 months to live, but he was tough. He fought for 2 more years. Ben was 9 years old when he died.
I never had a chance to meet Ben, but I have had the honor of meeting his wonderful family. His family has turned the tragedy of losing their son into a message of hope for other families.
Just before Ben died, he and his family enjoyed a special activity together--swimming with dolphins. Now, the Haight family's mission is to do all they can to fight cancer and to provide one child a year with the opportunity to swim with dolphins.
I think there is a sort of symbolic link here between his family and these dolphins. His father was a career enlisted man in the U.S. Navy, a chief in our submarine service. Of course, submarines use the dolphins as the symbol of their service branch. This is a family who has served the nation in uniform and who continues to serve the nation by fighting hard for other families who are afflicted by childhood cancer.
Now, Boey Byers was, in her words, a warrior against cancer, and I was very saddened to learn she has recently passed way. A few months ago, I had the privilege of speaking with Boey over the phone. She was full of life and spirit and struck me as very polite, poised, and wise beyond her years. I wanted to thank Boey for all she was doing to try to help other kids with cancer. Her passion in life was to find a cure for her warrior friends, as she called them, so they didn't have to suffer anymore and so they could live out their dreams and contribute to this great country.
We must remember there are thousands of children like Ben and Boey across the country. Each year, there are about 9,500 new cases of pediatric cancer, the leading cause of death by disease among children in the United States. While the incidence of cancer in children is increasing, the causes are largely unknown.
The National Cancer Institute--the NCI--currently spends about $170 million a year on pediatric cancer research, but most of the money goes toward laboratory research and preclinical testing. While it is important to test treatments in a test tube, Petri dish, or on animals, it is equally important to test treatments on humans in clinical trials.
For example, a recent clinical trial found that for children with neuroblastoma, less intensive chemotherapy is as effective as more intensive and toxic chemotherapy.
In 2002, an NCI peer review group of scientists recommended about $50 million in funding for pediatric cancer clinical trials. That level was never funded, and since then it has been cut, despite biomedical inflation and the increasing incidence of childhood cancer . Unfortunately, declining funding has stopped promising clinical trials. Pediatric cancer researchers expect only flat funding for clinical trials this year.
We can do better. The Conquer Childhood Cancer Act invests $30 million a year to expand pediatric cancer research and develop pediatric cancer clinical investigators. The bill also creates a national childhood cancer registry to track pediatric cancer. Researchers would be able to contact patients within weeks, enroll them in research studies, and follow up with them over time. Similar registries are already in place in Europe. If Europe can do it, we can do it, and we should do it.
This bill awaits action by the full Senate. It recently reached a significant milestone, garnering its 51st cosponsor. So even before any vote, we know for sure a majority of the Senate supports the bill. It has broad bipartisan support, with 14 Republican cosponsors and the support of both the majority and minority leaders.
Regrettably, a small minority is blocking this bill, and I call on the Senate to carry out the will of the majority and pass the bill. It is my hope that in doing so we will intensify our fight against childhood cancer, so that one day the hopes of Ben and Boey, and thousands of children like them, will be realized.
Mr. President, I yield now for the purpose of a colloquy with my colleague from Oregon.
The PRESIDING OFFICER. The Senator from Oregon.
Mr. WYDEN. Mr. President, first, I wish to commend my friend from Rhode Island for persistently and energetically prosecuting this cause, because having gotten to know Boey at home and visiting her in the hospital, I think all of us will understand it is hard to conceive of anything more tragic than seeing a young person's life claimed by cancer .
Senator Reed has been educating the Senate on this issue of importance, of research of this disease. I got to know Boey, and that is why I am glad he referred to her as a warrior. I would just tell my colleagues that if Boey had been an elected official, she would have been the chair of the Warrior Caucus because this very young child really did not know how to rest in the effort to try to get this legislation passed and to help our youngsters.
When she was taken from us, she had battled cancer not once but twice. The first time, she had beaten her cancer into remission. She lost her second battle, but she simply never rested. The day that I saw her last in the hospital, what we spent our time on was Boey and I walking down the halls with Boey trying to cheer up the other youngsters who were at the hospital. She put aside her own pain and fear that cancer would claim her life because she wanted to be, as Senator Reed has noted so eloquently, a warrior for all of the other children who have been suffering.
I am pleased to be out here with Senator Reed. I think this is another example of the entire country coming together to try to stand up for these kids. As Senator Reed has noted, when cancer strikes, it strikes a whole family. That was the certainly the case with Boey. Her loving parents, Rob and Rachel, her older brothers, Chris and Joe--all of us have continued to think about Boey and all she did to brighten our lives and particularly stand up for our children.
So for purposes of this evening, I simply wanted to ask my friend one question. This Senate can certainly have spirited debates about a lot of issues. Senators can have differences of opinion on a variety of questions, and we come from different parts of the land. The Senator from Rhode Island represents a State 3,000 miles from mine where Boey lives. But I am still troubled why the Senate cannot come together and pass this legislation. I think Senator Reed has made the case and made it well. He has clearly reached out to colleagues on both sides of the aisle. Surely, there should be nothing partisan about legislation such as this that will be so meaningful to children and their families.
For purposes of this evening, I wanted to get a sense from my colleague of what else he felt we ought to be trying to do to pass this important legislation and get it on its way to the President.
Mr. REED. I thank the Senator. One of the things we are doing this evening is once again highlighting the critical importance of this legislation, the impact it would make in the lives of children and families across the country. And your voice is a strong voice for not only this legislation but for issues affecting health care and children in this country.
I think we are picking up speed, but we need the cooperation of virtually all of our colleagues, not to pass the bill--we have 51 votes--but to get it on the floor. That is not something unusual here in the Senate. But I think this is the type of legislation that should not be caught up in the kind of procedural rules that we all use.
I am going to try to reach out and explain personally what is at stake, how we have tried to make changes, how we have pursued a bipartisan approach. I hope we can be persuasive enough to get this legislation on the floor for a vote. I do not think the opposition, frankly, is the concept and the mechanisms we are talking about. Certainly it is not opposition to helping families and children who have cancer. I think it is caught up in other issues. We would like to disentangle those issues and focus on what we can for children who have cancer.
I think that is one of Boey's works.
Mr. WYDEN. One of her many, and you can see her enthusiasm literally popping out of the drawing. She was an incredibly passionate woman. You have stated it well. I know of no Members of the Senate who get up in the morning and say they want to be hostile to children who are suffering this way. I think a piece of legislation such as this gets lost in the clutter of the Senate calendar and the business of the Senate.
All of us have staffers who handle health legislation and staffers who are serving as legislative directors. I think for purposes of tonight, particularly given your eloquent remarks, I hope the phone will ring off the hook in your office tomorrow with Senators and staffers calling and making clear they want to know more about this legislation and hopefully be cosponsors so we can get it passed.
Mr. REED. I am encouraged also. It is incumbent upon supporters like myself and yourself to begin to reach out, which I think we are both committed to doing, and doing it personally to try to get through. I think my sense is a lot like yours. It is not an issue that people are objecting to; it is caught up in bigger issues. And sometimes we just have to step back and understand that the big issues will still be there and the points can still be made, but we can get this bill done.
I noticed the warriors in Boey's drawing at the White House. My hope is one day the President in the White House is going to sign this bill. She will be there, and Ben will be there in spirit because they are the warriors, and the young men and women who are helping us in our mission.
So that is my hope. I think we can do that. We are going to try. If it is because we have not been as explicit or as communicative as we should have been with all of our colleagues, that is something we will correct very quickly.
Mr. WYDEN. I will do everything I can to help. I think the Senator has said it well. In a sense, his work acknowledges something we all see every time we are home, and that is that health care has always been the biggest issue here at home.
The Senator from Rhode Island is someone I admire in so many areas, relating to international affairs, with great expertise, and obviously there are many pressing concerns around the world. But the reality is, here at home, if our loved ones and our families do not have their health, it is hard to do anything else. I know in the case of Boey and the wonderful family, Rob and Rachel and her brothers, they were consumed by this. They all threw everything they had into trying to be there to comfort Boey, to get her the treatment she needed. So we ought to do this for the kids, and we ought to do this for the families. There are a lot of other issues we will be tackling both in health care and around the Senate schedule. This is something we ought to do now.
Mr. REED. I agree. I think it is something we can do. The effort is to bring people together and move from 51 to 61 to 71 to 100. I think we can.
Mr. WYDEN. Well said.
Mr. REED. We have begun in earnest months ago, and we are picking up the pace. I thank the Senator for his wise and kind words.
I yield the floor.