The Next Step, July 2010

Volume: 
10
Number: 
6

Appropriations Subcommittees Approve Bills to Fund Biomedical Research

On July 15, 2010, the House Appropriations Subcommittee on Labor, Health and Human Services (HHS), Education approved a bill to provide funding for the agencies under its purview for Fiscal Year (FY) 2011, which begins on October 1, 2010. The Subcommittee’s bill would provide a $1 billion increase to the National Institutes of Health (NIH), one of the agencies under HHS, for total funding of $32.007 billion. This increase of 3.2% over the FY 2010 level is equal to the President’s FY 2011 request for NIH. The Senate Subcommittee on Labor, HHS, Education followed the House's lead, approving $32.007 billion for NIH on July 26. The NIH is comprised of 27 institutes and centers, including the National Cancer Institute. At a time when there is significant pressure to cut spending to control the budget deficit, it is significant that the Subcommittees provide this increase.

 

Prior to the Subcommittee’s deliberations, Chairman David Obey (D-WI) offered an opening statement describing the bill’s priorities. He cited continued support for biomedical research at the NIH with an emphasis on translating basic research results into practical and available cures and treatments. Specifically, he pointed to the newly created Cures Acceleration Network (CAN) that was established as part of health care reform legislation (PPACA -- P.L. 111-148). The Subcommittee’s bill permits NIH to use up to $50 million to launch CAN, and the Senate bills provides $50 million specifically for the program. The Children’s Cause for Cancer Advocacy (CCCA) spearheaded a letter in June, signed by several other organizations concerned with childhood cancer, which supported full funding of CAN as a mechanism to facilitate new drug development for childhood cancers. CAN’s purpose is to fund research where the commercial market remains inadequate.

 

Health Care Reform Implementation - Enrollment in High-Risk Pools Begins

Childhood cancer survivors who have often struggled to obtain insurance coverage because of their cancer history, now have a new opportunity to obtain insurance coverage. The health care reform law (PPACA -- P.L. 111-148) provides coverage for uninsured individuals with pre-existing conditions through the establishment of high-risk pools. These pools, offered either by states or, in the case where a state declines to participate, by the federal government, began enrollment this month. High-risk pools will remain in effect until January 1, 2014, when the health care exchange program will be up and running. Under the law, $5 billion will be available to run these “pre-existing condition insurance plans,” – an amount that some have claimed is inadequate. Those eligible for the high-risk pools under the new law include citizens or lawful residents of the U.S. who have been uninsured for six months prior to applying, and who have a pre-existing condition as defined by HHS. Starting in 2014, the law prohibits insurers from discriminating against adults with pre-existing conditions.

 

Individuals that enrolled in a high-risk plan by July 15 will see their coverage begin by August 1. Premiums to gain access to this insurance are expected to average $400-$600 per month, which will vary from state to state. A new web portal offered by the federal government – www.healthcare.gov – provides information about insurance options for individuals, including participation in high-risk pools.

 

Health Care Reform Implementation - Tools for Consumers Provided through Government Web Portal

healthcare.govParents and survivors have a new tool that provides information on the new health reform law, including insurance options, prevention information, and care comparisons (currently limited to hospitals). On June 30, HHS launched a web portal - www.healthcare.gov – that is constantly being updated as new information becomes available and provides a useful resource for those interested in learning more about what health care reform means to them and immediate options for coverage. Consumers can enter information about themselves and their specific situation to access a catalog of both public and private insurance options, such as Medicaid programs, Children's Health Insurance Programs, Pre-existing Condition Insurance Plans, and private insurance plans supplied by more than 1,000 insurance carriers across the country.

 

The website allows users to offer feedback on its contents to determine the usefulness of information provided, which presumably will be taken into account as the website is further developed. Those interested in specific provisions of the law or tracking implementation can find related documents on the site. CCCA will continue to review the regulations related to implementation to determine the consequences and opportunities for children with cancer.

 

Dr. Harold Varmus Takes the Reins at NCI 

On July 12, 2010, Dr. Harold Varmus was sworn in as the new Director of the National Cancer Institute (NCI), one of 27 institutes and centers that make up the NIH. Dr. Varmus was formerly the Director of NIH and most recently president and CEO of the Memorial Sloan-Kettering Cancer Center in New York. In 1989, he received the Nobel Prize for his work related to the genetic basis of cancer.

 

Dr. Varmus, on his second day of work, spoke about his priorities at NCI at the Cancer Leadership Council, of which CCCA is a long-time member. He focused on the need for updated and redesigned clinical trial models that reflect scientific advances; reform of the approval and regulation of cancer drugs, including cost; and better utilization of clinical centers, including the transfer of new knowledge more quickly into the practice of oncology in the community setting. Further, Dr. Varmus is planning to guide NCI’s work by focusing specifically on the “big science” problems NCI needs to solve. He plans to convene a group of experts to determine key provocative and answerable questions that if addressed would advance cancer discovery and treatment.

 

Study of Childhood Cancer Survivors Shows Late Effects of Radiation in Pregnancies

A recent study published in The Lancet Online shows that women exposed to uterine and ovarian radiation therapy during childhood reported a higher incidence of stillbirth and neonatal death. The analysis utilized data from a cohort participating in the Childhood Cancer Survivor Study (CCSS). The CCSS is a collaborative, multi-institutional study comprised of individuals who survived five or more years after diagnosis of cancer in childhood or adolescence. CCCA President and Founder Susan Weiner serves on the External Advisory Committee of the CCSS and participates in the Annual Investigator Meetings.

Researchers studied 1,148 men and 1,657 women in the CCSS cohort who had been treated for cancer before age 21. Of women who did not have radiotherapy to their womb or ovaries, 1 in 100 had a stillbirth or had a baby who died soon after birth. For those who were subject to a low dose of radiation before puberty, the risk rose to 2 in 100.The risk increased to 13 in 100 with higher doses of radiation. The report did not show a harmful effect on pregnancy due to treatment with chemotherapy drugs.

The authors concluded that “high-dose pelvic radiation can permanently impair growth and blood flow to the uterus, resulting in reduced uterine volume” and that “further studies are needed to clarify the mechanisms that increase risk.” For women treated with high doses of pelvic radiation at a young age, the report’s findings argue for careful monitoring of a survivor’s pregnancy.

 

CCCA Celebrates on Capitol Hill

Image: CCCA Board Member Maureen Lilly with guest Dave Smith, CEO of Special Love

Lori Salley Welcome ReceptionCCCA’s Washington DC board members invited supporters to celebrate CCCA's public policy efforts at an intimate reception on Capitol Hill on July 15. The event, hosted by the Fluor Corporation, welcomed CCCA’s new executive director, Lori Salley, who worked on Capitol Hill for more than 17 years. At the event, board member Maureen Lilly spoke passionately about the importance of being an advocate for cancer patients and families, from her perspective as a mother of a daughter who lost her battle with a brain tumor.

CCCA's mission is to ensure that the needs and perspectives of childhood cancer survivors and their families are heard by policymakers and implemented into legislation that can improve their health and lives. CCCA is closely tracking all legislation in Congress related to childhood cancer research and survivorship and taking active steps towards strengthening these bills, as well as providing a voice in agency deliberations about health care reform implementation and obstacles to drug development.

 

Save the Dates for CCCA's Events in Chicago and New York

CCCA is actively planning its “Rise to the Occasion” events in New York and Chicago. Please save the date of Thursday, September 23rd to join us at 437 Rush in downtown Chicago for what promises to be a lively event in the Windy City.

 

On Thursday, November 11, CCCA will hold its signature fundraiser in New York City at the lovely Ana Tzarev Gallery, located at 24 West 57 Street. CCCA will be joined in NY by Congresswoman Deborah Pryce (1993-2009) who established and chaired the House Cancer Caucus and founded Hope Street Kids Foundation, in memory of her daughter Caroline, to raise funds for pediatric cancer research.

For more information, contact Rebecca Gurvich at rgurvich@childrenscause.org.