Recent Policy Letters Written or Signed by ccca
Affordable Care Act, February 2017: A letter to House and Senate leaders from the Alliance for Childhood Cancer, urging coverage protection for children with cancer as changes to the Affordable Care Act are considered. The letter emphasizes the ACA's financial protections, such as limiting out-of-pocket expenses, which enable families to treat their children's disease without becoming bankrupt.
"The ACA includes many insurance market reforms that have been vital to childhood cancer patients, survivors and their families. One critical provision prevents insurers from denying or retroactively denying coverage to children or adults with pre-existing health conditions or charging people with preexisting conditions more than those without. ... Survivors’ lasting impairments make it especially important to preserve the ACA’s prohibition of lifetime caps or annual limits on coverage. Insurers must not be allowed to cancel coverage when a child becomes sick or to charge individuals with pre-existing conditions more than those without such conditions – protections now provided by the ACA. Under the ACA, survivors can also receive continued care is protected by allowing them to remain on their parents’ health insurance plans up to age 26 – a vital time before many can enter the workforce to obtain their own coverage. Lastly, the ACA concurrent care p3rovision ensures that children near the end of life do not have to give up hope by stopping curative treatments in order to receive hospice care."
Vaccine Safety, February 2017: A letter signed by hundreds of health organizations to President Trump, emphasizing that vaccines are safe, effective and save millions of lives. The letter includes a non-exhaustive list of scientific studies demonstrating the safety of vaccines, with the offer to meet and share more.
"On behalf of organizations representing families, providers, researchers, patients, and consumers, we write to express our unequivocal support for the safety of vaccines. Vaccines protect the health of children and adults and save lives. They prevent life-threatening diseases, including forms of cancer. Vaccines have been part of the fabric of our society for decades and are one of the most significant medical innovations of our time."
Pre-Existing Condition Protection, February 2017: Coalition letter to Congress stressing the critical importance of retaining key protections in the current healthcare law that guarantee access to coverage for patients with pre-existing health conditions.
"The current patient protections have provided a degree of security and certainty for Americans with serious illness that they now expect. On behalf of the millions of patients we represent, we stand ready to work with you to develop policies that will ensure individuals with pre-existing conditions and high-cost care needs have access to a robust health insurance market that provides affordable and comprehensive care options."
Insurance Coverage, January 2017: A Children's Cause letter to the co-chairs of the Congressional Childhood Cancer Caucus urging lawmakers to protect children and adolescents with cancer by ensuring that no healthcare changes diminish their coverage or timely access to affordable, quality care.
"Children in need of active treatment and appropriate symptom management, as well as survivors who need ongoing care including monitoring, follow-up services, and preventive services, could be adversely affected by significant disruptions in the insurance market. We support access to care for cancer patients across the continuum of their disease without a period of uncertainty in the insurance market that might result in loss of access to affordable insurance coverage and therefore access to care."
Affordable Care Act, December 2016: A Cancer Leadership Council letter urging Congress not to move to repeal provisions of the Affordable Care Act until specific legislative proposals are identified to replace the current law.
"As you turn your attention to 'repeal and replacement' of the Affordable Care Act, we urge that you remember the acute, chronic, and lifetime needs of cancer patients. For these Americans, a disruption in the insurance market may translate to a loss of affordable insurance coverage and access to care.
...The undersigned organizations have been guided by several core principles of health reform. We have sought a health system that ensures all cancer patients access to care that is affordable and that does not force them in bankruptcy if they require complex care. We also have sought to ensure that the health insurance system supports the delivery of cancer care that is increasingly personalized. Finally, the health care system must provide cancer patients access to innovations -- both new treatments and innovations in the delivery of patient-centered care."
BPCA/PREA, August 2016: A Children's Cause letter in response to a July 2016 FDA Status Report to Congress on the Best Pharmaceuticals for Children Act (BPCA) and Pediatric Research Equity Act (PREA).
"We are pleased that several of the Alliance [for Childhood Cancer] recommendations are contained in your Status Report. Specifically... we are encouraged the FDA recommends an amendment of PREA, as the Alliance does, to require certain drugs (including biological products) developed for adult cancer indications to be evaluated for a pediatric cancer indication, when there is evidence the drug affects specific molecular targets and/or molecular mechanisms shared between adult and pediatric cancers. ... In addition to these key areas of agreement, the Alliance has proposed six other recommendations for consideration by the FDA and Congress. Over the coming year, we look forward to working with the FDA and Congress to improve BPCA and PREA for children with cancer."
FDA Oncology Center of Excellence, June 2016: A Children's Cause letter supporting the establishment of an Oncology Center of Excellence at the FDA that would improve access to viable treatments for children with cancer.
"We support the establishment of an Oncology Center of Excellence that is capable of review of cancer diagnostics, drugs, and biologics for children with cancer. In short, we encourage any plans for an Oncology Center of Excellence to include a focus on the particular needs of children with cancer. The development of effective therapies for children will require a disciplined, tailored and even personalized approach to the review of drugs, biologics, and diagnostics for the diagnosis and treatment of cancer."
NIH-NCI Funding, March 2016: An Alliance for Childhood Cancer letter calling for $34.5 billion for the NIH and $5.9 billion for the NCI in FY2017. We also call for childhood cancer to become a greater priority within Congress and the NIH. Toward that aim, we included specific requests for report language around the Pediatric-MATCH Trial, pediatric immunotherapy advances, and more.
"Within these funds, we are committed to working with Congress and the National Institutes of Health to ensure that childhood cancer becomes a higher priority. Each year in the U.S. an estimated 15,780 children are diagnosed with cancer. Approximately 1 in 285 children in the U.S. are diagnosed with cancer before their 20th birthday. Annually there are more than 250,000 children diagnosed with cancer worldwide. Unfortunately, cancer remains the most common cause of death by disease for children in America."
Labor-HHS Funding, February 2016: A community letter signed by more than 660 organizations urging an increase to the Labor-HHS allocation in the FY2017 budget.
"Without an increase in the Labor-HHS 302(b) allocation, it will be virtually impossible to meaningfully increase investments in important initiatives—such as expanding medical research at the National Institutes of Health, implementing the bipartisan Every Student Succeeds Act, continuing to improve college affordability and completion, or achieving the goals contained in the bipartisan Workforce Innovation and Opportunities Act (WIOA)—without deep cuts in other equally important initiatives."
Support for Nomination of Dr. Califf for FDA Commissioner: A community letter to Senators Mitch McConnell and Harry Reid requesting the Senate vote to confirm Dr. Robert Califf as FDA Commissioner as soon as possible.
"The FDA needs a strong commissioner with broad support at such a pivotal time and we believe that Dr. Califf is that strong leader. Congress must ensure that FDA continues its important mission to provide patients with safe and effective treatments. We ask the Senate to start 2016 to do what is right by patients and immediately confirm Dr. Robert Califf as FDA commissioner."
National Cancer Moonshot, February 2016: A community letter signed by over 185 organizations to thank Vice President Biden for his leadership and support of a greater investment in cancer research.
"As organizations that represent cancer researchers, cancer centers, clinicians, caregivers, survivors, patient advocates, and others in the cancer community, we greatly appreciate your leadership and share your excitement and sense of urgency for finding more treatments and cures for this devastating disease. Over the coming months, we look forward to working with you to move these concepts from the drawing board to the launching pad."
Chronic Care, January 2016: Children's Cause letter to Senate Bipartisan Chronic Care Working Group with recommendations on integration of survivorship care and transitions of care.
"We recommend that models that integrate care also include the delivery of comprehensive cancer survivorship care. Individuals who have been diagnosed with cancer and received treatment that might include surgery, radiation, and chemotherapy are often “lost in transition” as they move from active treatment to long-term survivorship."
CMS Benefit and Payment Parameters for 2017, December 2015: A Cancer Leadership Council letter to the Acting Administrator at Centers for Medicare & Medicaid Services providing advice on modifications to the proposed standards for qualified health plans and the operations of health insurance exchanges.
"We are mindful of the need to balance access for the individual to care out-of-network with the cost of such care and the potential effects of these costs on health insurance premiums. Ensuring access to quality care and also guaranteeing affordable premiums require difficult balancing of interests and costs. We make the strong recommendations above regarding out-ofnetwork care with the challenges regarding the overall cost of insurance coverage in mind."
21st Century Cures, March 2015: An Alliance for Childhood Cancer letter providing comments to Energy & Commerce Committee co-chairs Upton and DeGette on the NIH Innovation Fund, FDA funding, expanded access, clinical trials and other issues of particular interest to childhood cancer advocates.
"The Alliance for Childhood Cancer is grateful to the Committee for its extensive outreach and analysis and looks forward to continuing discussion that will bring families’, patients’ and survivors’ perspectives and insights to the final 21st Century Cures legislation. The promise of scientific advances that can bring cures to children with cancer is greater than it has ever been."