Congress approves Reed child cancer legislation

WASHINGTON – The U.S. Senate last week passed legislation sponsored by U.S. Sen. Jack Reed that will provide $150 million over five years to expand childhood cancer research, increase services to patients and families, and create a national childhood cancer registry.
The Conquer Childhood Cancer Act, which the U.S. House of Representatives had passed unanimously on June 12, now goes to President Bush to be signed into law.
More than 12,000 children are diagnosed with cancer every year in the United States. Research and medical advances have dramatically reduced mortality rates in recent years, but even today, more than one-sixth of patients succumb to the disease.
“The thousands of kids and their families who battle this disease have inspired us to turn tragedy into hope, and we were able to pass this bill because of them,” said Reed in a news release. “We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much-needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs.”
The legislation will encourage and expand support for pediatric cancer research by authorizing $30 million annually for the next five years for biomedical research programs at the National Cancer Institute. In addition, it will establish a national, population-based childhood cancer registry to evaluate the incidence trends of childhood cancers and research into genetic and environmental causes of the disease.
The database will also make it easier to connect researchers with patients who could benefit from new treatments.
One of the inspirations for the legislation was Ben Haight, son of Nancy and Vince Haight, of Warwick, who died from an aggressive form of childhood cancer in 2003.
“Ben fought so valiantly and with such spirit,” Nancy Haight said in a news release. “It was inconceivable to us that a better treatment for this disease did not exist, and very little progress has been made since that day. Ben never let cancer interfere with living his life to the fullest, experiencing all the important things in a boy’s life. Ben never complained. His courage and strength inspired us and many others. Though Ben ultimately lost his battle, we continue on, trying to bring attention to this problem.”
In addition to providing support for childhood cancer research, Reed’s bill also authorizes grants to expand informational programs to ensure early access to the best available therapies and clinical trials and necessary long-term medical and psychological care, and provide services such as support networks, educational teleconferences, and referrals for financial assistance and psychological counseling.
“When a child is diagnosed with cancer, suddenly the whole family’s life changes overnight. Often times, parents will have to quit their job to stay home and care for their child. This bill will help more families find the best care possible and at the same time provide some comfort and needed research,” Reed said.