Pushing Foward

Source: Sandusky Register 

December 18, 2009 (Sandusky, OH) - "This, for us, for me in particular, is part ofthe grieving process," said Alexa's dad, Warren Brown. "I told her in the weeks before she died, we will not rest." Ohio Department of Health and Ohio Environmental Protection Agency researchers expanded the scope of the cluster, increasing the size of the affected area and the number of cases involved. Now the cluster envelops a large part of Fremont and Green Creek Township and the number of cases hovers at 28. Air, water and soil tests reveal little new information. This indicates an environmental anomaly could be the culprit. At some time, a chemical toxin or heavy metal wreaked havoc in this area and then disappeared. While the absence of answers frustrates residents, progress has been made on a different front. 

Word about the cluster and the need for additional research into childhood cancers is reaching the highest levels of government. Speaking up At the front ofthe charge is the Brown family of Clyde, who lost their 11-year-old Alexa to brain cancer in August. When it became clear their youngest child could not defeat cancer, Wendy and Warren Brown decided to keep fighting. "This, for us, for me in particular, is part of the grieving process," Warren said. "Itoldher in theweeks before she died, we will not rest." They started pushing lawmakers to make research on childhood cancers a priority. 

Not long ago, a pediatric cancer diagnosis was a virtual death sentence. But even with advances in medicine, one in five children diagnosed with cancer die from the disease. Kate Shafer director of advocacy for CureSearch, a fundraising organization devoted to childhood cancer said more funding will be necessary until researchers find a way to save all children. "The traditional ways of treating cancer, the combinations of radiation and chemotherapy, they have been pushed as far as they can be pushed," Shafer said, "The 20 percent of children who are not cured, there is going to need to be an entirely different approach to treating those cancers." While Shafer can't pinpoint exacdy how many federal dollars are spent on researching childhood-specific cancers, she said it's definitely less than what's spent on many other diseases and types of cancer. The funding disparity might be caused by the relatively small number of cases 12,000 to 15,000 new childhood cancer cases are diagnosed each year. That's in comparison to the almost 200,000 annual cases of breast cancer and more than 220,000 annual cases of lung cancer in adults. 

Wendy and Warren believe more attention isn't paid to childhood cancer research because children and their families are too absorbed in treatment to call their representatives. "If your child has canceryou're busy doing something," Wendy said. "Or you're here (raising support) because your child has died and you can't help them anymore." Warren doubts researchers will ever find the "smoking gun" that caused the local cancer cluster. But by supporting research for better treaUnents, and ultimately a cure, something could be done to benefit the 40,000 families in the U.S. coping with childhood cancer. Fight for funding Early in their research the Browns discovered that Congress unanimously approved the Caroline Pryce Walker Conquer Childhood Cancer Act. The 2008 legislation was named for the daughter of former Warrenarea Rep. Deborah Pryce Walker. The act opened a window for $30 million In federal funding to be put toward childhood cancer research each year for Ave years. 

The bill, however, is merely symbolic unless Congress votes to fund it. The act went unfunded in 2008. When Warren and Wendy looked into it, the bill also stood without funding for 2009. The Browns started writing letters and making phone calls, and caught the attention of Rep. Bob Latta, R-Bowling Green. Latta pulled some strings on the House Appropriations Committee and, with Rep. Tom Cole, R-Okla., secured $10 million for cancer research in the Health and Human Services appropriations bill. The Senate is proving more difficult. A local liaison for Sen. Sherrod Brown's office met Alexa in the weeks before the little girl died. The liaison convinced the Ohio senator to schedule a visit to see Alexa and her family for himself. He arrived too late. Alexa died just days before tlie senator's visit. He sat on Wendy and Warren's front porch and listened to the grief-stricken parents. Warren told him about carrying his youngest daughter, swaddled in her Tinker Bell blanket, to a waiting hearse. Then he pressed the senator for support in funding research efforts so more parents don't suffer the same tragedy. The senator said he would do everything he could to see that the act received funding. Lobbying lawmakers Wendy, Warren and advocates at CureSearch watched carefully through the fall as lawmakers sorted out the appropriations bill. 

Students from Clyde-Green Springs Schools lent a hand by sending hundreds of letters to congressional leaders urging them to support the funding. But by early November, the money no longer graced tlie Senate side of the Health and Human Services appropriation. It hit a roadblock put up by senators who said Congress should not tell the National Cancer Institute how to spend its money. Yet Brown, a member of the senate health committee, said it's common knowledge that pediatric medicine of all kinds is chronically underfunded. Plus, he said, Congress has allocated money for specific research before. Concerned that the funding might die in committee, Wendy and Warren packed up and drove to Washington, D.C, to personally ask lawmakers for support. In Washington they met again with Brown, who said he would talk to Sen. lorn Harkin, D-Iowa, the head of the appropriations committee, to urge him to support the funding. Latta, Rep. Marcy Kaptur, D-Toledo, and Rep. Dennis Kucinich, D-Clcveland, also pledged to put their weight behind tlie elfort. 

Though other senators wouldn't meet with Wendy and Warren in person, the couple talked with staffers of Sen. Arlen Specter, D-Pa., Sen. Richard Durbin, D-IU., Sen. Richard Shelby, R-Ala., and Senate majority leader Harry Reid, D-Nev. At each of those stops and some in between. Wendy and Warren left staffers with a letter Warren wrote to President Barack Obama, a DVD of facts and pictures and a golden ribbon. A staff member in Shelby's office said information about their family and their cause preceded them. As of last week, Shafer said senators had not earmarked the research funding in the Senate version ofthe bill. With the end of the year approaching, it's possible lawmakers could decide to wrap all appropriations into one huge omnibus bill. That would spell bad news for the research funding, Shafer said, because earmarks are often stripped from the bills to make them easier to approve. 

Early last week, Latta sent a letter endorsed by a coalition of Ohio representatives to the Office of Management and Budget, urging the full $30 million funding ofthe Carolyn Pryce Walker act in 2011. Golden ribbons Wendy, her daughters and family friends started making the golden ribbons in the days after Alexa's death. They burned their fingers wielding hot glue guns and snipped and pinned thousands of die gold loops. The ribbons started as a symbol to recognize September as Childhood Cancer Awareness mondi. But in the local community, the ribbons quickly became a banner of support for childhood cancer research funding. Volunteers sold thousands of the ribbons, gathering donations for research. As a result, Wendy and Warren did more than just ask for more research money during their trip. They delivered $8,071.35 raised in the local community to CureSearch to match thousands of dollars in direct donations sent from local families. Shafer gratefully accepted the money. "I really feellike we're on the cusp of something," she told the couple after their day on Capitol Hill. She said after years of trying to raise awareness about childhood cancers and the need for more research, the battle cry echoing from northwestern Ohio seems to be reaching the right ears. 

"The power of two is just unbelievable," she said.  Find out how you can help. They and others in the Clyde area ask for help in lobbying legislators to devote more funding toward childhood cancer research, at his Washington, D.C, office in November. The Browns traveled to the nation's capital to lobby funding support for the Caroline Pryce Walker Conquer Childhood Cancer Act. 

- Sara Weber 

Christine Bork
Email Christine
(800) 458-6223

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