Pending Legislation
Below is a description of current legislative initiatives that the pediatric cancer community may find relevant. While the bills are at various stages in the legislative process, the list provides insight into the issues Congress is focused on with regard to cancer. This perspective provides a sense of where Congress is focused generally regarding cancer care and benefits.
- Affordable Health Care for America Act (Health Care Reform)
- The Childhood Cancer Survivorship Act
- 21st Century Cancer ALERT Act (Access to Life-Saving Early detection, Research, and Treatment)
- Labor, Education, HHS Appropriations
- Resolution Expressing Support for Designation of September 13, 2010 as National Childhood Cancer Awareness Day
- National Childhood Brain Tumor Prevention Network Act of 2009
- Access to Cancer Clinical Trials Act
- Children's Health Protection Act
- National Pain Care Policy Act
- Pre-existing Condition Patient Protection
- Improvement of the National Program of Cancer Registries Act
- Advanced Planning and Compassionate Care Act
- Pediatric Research Consortia Establishment Act
- Comprehensive Cancer Care Improvement Act
- Assuring and Improving Cancer Treatment Education and Cancer Symptom Management Act of 2009
- Oncology Care Quality Improvement (OCQI) Act of 2009
- Medicare Cancer Patient Database and Coverage Act
- President's Fiscal Year 2011 Budget for HHS
Affordable Health Care for America Act
H.R.3962 /H.R.3590 -- Health Care Reform*
*For more comprehensive information on the health care reform bill, please visit our health care reform page.
Summary: Legislation to provide health insurance coverage to most Americans. Specific provisions of interest to pediatric cancer community include: limits on pre-existing condition exclusions; ban on lifetime limits on insurance; prohibition on dropping insurance coverage when individuals gets ill; greater regulation of premium increases; and coverage of dependents on parent plans until age 26.
Status: Passed and signed by the President March 23, 2010.
The Childhood Cancer Survivorship Act
Sponsor: Jackie Speier (D-CA) (47 Cosponsors)
Summary: Enhances research and programs on childhood cancer survivorship. Improves and expands cancer control programs via CDC and NCI; supports NIH research on survivorship, including a focus on disparities, training of health professionals related to follow-up care, model systems of care; and provides HHS grants for clinics and professional and advocacy organizations focused on long-term follow-up services for childhood cancer survivors.
Status: Referred to Committee on Energy & Commerce.
CCCA has weighed in on this bill as it was developed and continues to advocate for the passage of this legislation.
21st Century Cancer ALERT Act (Access to Life-Saving Early detection, Research, and Treatment)
Sponsor: Late Senator Kennedy (D-MA) (21 cosponsors: 20 D, 1 R, 6 committee)
Summary: Revises national cancer program and establishes an entity in NCI that supports new technologies in cancer research. Supports tissue collection and quality. Provisions on clinical trials, low-survival cancers, screenings through Medicaid, biomarkers research, workforce, patient navigator program, payment for comprehensive cancer care under Medicare, coverage of tobacco cessation products, research on childhood cancer survivorship and disparities, and psychological care during chronic illness.
Status: Referred to Senate HELP Committee.
Labor, Education, HHS Appropriations bill
Sponsor: Chairman David Obey (D-WI)
Summary: Funds Department of Labor, Education, and HHS, including related agencies such as NIH, AHRQ, and CDC.
Status: This year's appropriations process has begun with hearings on agency budgets while Members set deadlines for the receipt of earmark requests.
P.I. 110-285 Caroline Pryce Walker Conquer Childhood Cancer Act
Summary: Authorized appropriations ($30 million each year FY 09-13) for pediatric cancer research via NCI, authorizes HHS to award grants to childhood cancer organizations for providing information on treatment protocols and late effects of pediatric cancer and educational outreach for parents regarding support services and other issues. Requires Secretary to award a grant to expand infrastructure to track the epidemiology of pediatric cancer into a comprehensive nationwide registry of actual occurrences.
Status: The bill was signed into law in July 2008. Funding the legislation is required. In 2009, an earmark to fund the legislation at $10 million through NCI was met with resistance from the institute and NIH promised to fully fund the Act if the earmark was dropped. Now it is incumbent upon the community and Congress to keep NCI true to their word. More than 40 Members signed a letter to Obey to support full funding of the Act.
Sponsor: Rep. Joe Sestak (D-PA) (11 Cosponsors)
Status: Referred to Energy and Commerce Committee. Last year, similar legislation, S. Res. 200, regarding the designation of September 12, 2009 as National Childhood Cancer Awareness Day was agreed to by the Senate.
National Childhood Brain Tumor Prevention Network Act of 2009
Sponsor: Rep. Barbara Lee (D-CA) (18 Cosponsors)
Summary: Requires the Director of NIH via the NCI to establish and administer a National Childhood Brain Tumor Prevention Network provide grants for research on the causes and risk factors associated with childhood brain tumors; assemble a panel of experts to provide ongoing guidance and recommendation on research funded by the Network; and designate a central laboratory to collect, analyze, and aggregate data with respect to research funded by the Network and make such data available.
Status: Referred to Energy and Commerce Committee. Referred to Senate HELP Committee.
Access to Cancer Clinical Trials Act
Sponsor: Rep. Steve Israel (D-NY) (53 Cosponsors); Senator Sherrod Brown (D-OH) (3 Cosponsors)
Summary: Prohibits a group health plan from 1. Denying an eligible participant or beneficiary with cancer participation in clinical trials that are federally funded or for a FDA investigational new drug application, 2. Denying coverage of routine patient costs related to participation in a trial, 3. Discriminating against an individual on the basis of participation.
Status: Referred to House Energy and Commerce Committee and the Committees on Education and Labor, and Ways and Means. Referred to Senate HELP Committee.
Children's Health Protection Act
Sponsor: Rep. Allyson Schwartz (D-PA) (96 Cosponsors); Sen. Frank Lautenberg (D-NJ) (3 Cosponsors)
Summary: Prohibits a group health plan from imposing any preexisting condition exclusion for individuals under 25 years.
Status: Referred to House Subcommittee on Health, Employment, Labor, and Pensions. Referred to Senate HELP Committee.
Sponsors: Rep. Lois Capps (D-CA) (15 Cosponsors); Sen. Orrin Hatch (R-UT) (6 Cosponsors)
Summary: Requires HHS via IOM (or other entity) to convene a conference on pain and subsequent report to Congress. Requires NIH to expand, via the Pain Consortium, research on causes and treatments for pain, with a report on appropriate pain research initiatives. Establishes an Interagency Pain Research Coordinating Committee to coordinate all efforts within agencies related to pain research. Allows the award of grants, etc., for development programs to provide education and training to health care professionals in pain care. Establishes a national pain care education outreach and awareness campaign.
Status: House passed under suspension of the rules. Referred to Senate HELP Committee.
Pre-existing Condition Patient Protection*
Sponsor: Rep. Joe Courtney (D-CT) (71 Cosponsors); Sen. John Rockefeller (D-WV) (5 Cosponsors)
*Similar legislation: H.R.4019, Rep. Nathan Deal (3 Cosponsors)
Summary: Prohibits a group health plan from imposing preexisting condition exclusions or providing for an affiliation period for coverage offered by an HMO. Group issuers must accept all employers in state. Revises preexisting condition exclusions in individual market. Insurers to provide data to HHS re: adverse selection and for compliance. Provides for GAO report on impact.
Status: Referred to House Subcommittee on Health, Employment, Labor, and Pensions. Referred to Senate HELP Committee.
Improvement of the National Program of Cancer Registries Act
Sponsor: Senator Bernie Sanders (I-VT) (0 Cosponsors)
Summary: Revises requirements for statewide cancer registries to require inclusion of information on the level of education attained by adults with cancer, sources of payment by individuals for costs of diagnosis and treatment, history of alcohol and tobacco use by individuals with cancer. Requires CDC to develop standards for data collection, as well as inter-operability and security standards for data exchange between registries and to provide a basic electronic collection tool to facilitate standardized data. Requires HHS to facilitate coordination of the National Program of Cancer Registries with other federally supported registry programs, including infectious disease, environmental disease, and other chronic disease registries.
Status: Referred to HELP Committee.
Advanced Planning and Compassionate Care Act
Sponsor: Rep. Earl Blumenauer (D-OR) (3 Cosponsors); Senator Rockefeller (D0WV) (7 Cosponsors)
Summary: Directs HHS via CDC to establish a 24-hour free hotline for consumers on advanced care planning. Directs Secretary to develop and online clearinghouse to provide comprehensive information on advanced care planning and pediatric advanced care planning. Directs Secretary to develop an online advanced care planning toolkit on specific websites. Directs HHS/CDC to develop a national campaign to inform public of importance of advance care planning. Updates Medicare and SS handbooks with information. Allows LSC to provide legal assistance on the topic. Directs CMS to provide a website for providers on each individual's right to make decisions concerning medical care and regarding advanced directives. Addresses portability of advanced directives. Provides for grants to establish and operate state advance directive registries. Directs HRSA to develop a curriculum for continuing education for physicians and nurses on advanced care planning and end-of-life care. Establishes within the National Health Service Corps a National Geriatric and Palliative Care Service Corps. Exempts palliative medicine fellowship training from GME caps. Directs Secretary to establish guidelines for medical schools to provide a minimum amount of end-of-life training as a requirement for MDs and DOs. Covers advanced care planning under Medicare, Medicaid, and CHIP. Makes hospice a required Medicaid and CHIP benefit and revises Medicare payment. Directs Secretary via AHRQ to develop standards for accreditation of hospital-based palliative care programs. Establishes within NIH a National Center on Palliative and End-of-Life Care. Directs Secretary to establish a demonstration program for telemedicine services in advanced care planning.
Status: Referred to the House Subcommittee on Commercial and Administrative Law. Referred to the Senate Finance Committee.
Pediatric Research Consortia Establishment Act
Sponsors: Rep. Diana DeGette (D-CO) (42 Cosponsors); Senator Sherrod Brown (D-OH) (6 Cosponsors)
Summary: Requires Director of the NIH through the NICHHD, to award grants, contracts, or cooperative agreements to plan, establish, and provide operating support for up to 20 national pediatric research consortia. Requires each consortium to supplement the establishment of a comprehensive pediatric research portfolio; conduct basic, clinical, behavioral, social, and translational research; and conduct training and demonstration of advanced diagnostic and treatment methods related to pediatrics.
Status: Referred to House Committee on Energy and Commerce. Referred to Senate HELP Committee.
CANCER LEGISLATION AFFECTING MEDICARE PATIENTS
Comprehensive Cancer Care Improvement Act
Sponsors: Sen. Mary Landrieu (D-LA) (0 Cosponsors); Rep. Lois Capps (D-CA) (66 Cosponsors)
Summary: Provides for coverage of comprehensive cancer care symptom management through Medicare. Two-year demonstration project for Medicare payment for services; grants to entities establishing new or expanded palliative care and symptom management program for cancer patients; grants to improve education of health care providers in palliative and symptom management of cancer patients; NIH grants for research on palliative care, symptom management and communication skills re: end-of-life topics.
Status: Referred to Committees on Energy and Commerce and Ways and Means. Referred to Senate Finance Committee.
Assuring and Improving Cancer Treatment Education and Cancer Symptom Management Act of 2009
Sponsor: Rep. Steve Israel (D-NY) (37 Cosponsors)
Summary: Provides coverage under Medicare for comprehensive cancer patient treatment education services. Directs NIH to expand and coordinate programs for improving the treatment and management of symptoms and side effects associated with cancer treatment and evaluating the role of nursing intervention research. Proves for IOM/NAS report on current state of symptom management, patient treatment education, and supportive care given to people with cancer.
Status: Referred to Energy and Commerce and Ways and Means Committees.
Oncology Care Quality Improvement (OCQI) Act of 2009
Sponsor: Rep. Joseph Crowley (D-NY) (25 Cosponsors)
Summary: Directs Secretary of HHS to establish a pilot program of oncology care quality improvement under Medicare to evaluate the impact of 3 provider-led approaches to improve the care quality and outcomes for Medicare beneficiaries with cancer. Three approaches are: 1) evidence-based guideline adherence; 2) patient education and care coordination services; and 3) end-of-life planning and counseling services. Advisory committee to be appointed to create and implement OCQI program.
Status: Referred to House Committees on Ways and Means and Energy and Commerce
Medicare Cancer Patient Database and Coverage Act
Sponsor: Rep. Parker Griffith (R-AL) (Cosponsors: 0)
Summary: Directs Secretary of HHS to collect additional data to update existing database regarding individuals with cancer in order to provide information on the number of individuals, types and stages of cancer and the efficacy of different treatments. Provides uninsured cancer patients to Medicare coverage. Directs Secretary to provide for an educational and outreach program to encourage individuals to be tested for cancer at earliest time it might be useful based on screening recommendations of the US Preventative Services Task Force.
Status: Referred to House Committees on Energy and Commerce and Ways and Means.
President's Fiscal Year 2011 Budget for HHS
Health IT: The Administration will continue to prioritize the adoption and use of health IT and the budget includes $110 million for strengthening HIT policy, coordination and research activities designed to assist provider with adoption and meaningful use of electronic health records. Clearly, privacy is a key factor in promoting HIT.
Comparative Effectiveness Research: The President's budget includes $286 million for AHRQ to do research that compares the effectiveness of different medical options with the goal of disseminating the research to patients and physicians so that they can access higher quality, evidence based medicine.
NIH: The President's budget adds $1 billion to NIH's budget. Areas of priority research include genomics, translational research, science to support health care reform, global health, and reinvigorating the biomedical research community. The budget includes $6,036 million to support a range of "bold and innovative" cancer efforts, including the initiation of 30 new drug trials in 2011, and a doubling of the number of novel compounds in Phase 1-3 clinical trials by 2016. The budget also supports the completion of a comprehensive catalog of cancer mutations for the 20 most common malignancies, with the goal of obtaining a complete genomic characterization of every cancer as part of medical care within 10 years.
Prevention and Wellness Activities: The budget enhances surveillance and health statistics to improve detection and monitoring of chronic disease and health outcomes.
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Copyright © 2009 The Children's Cause for Cancer Advocacy, Inc.