Recent Policy Letters Written or Signed by CCCA
VACCINES Act of 2019, May 2019: A community letter led by the American Academy of Pediatrics urging Congress to sign on to the VACCINES Act of 2019, which would help track vaccination rates, combat vaccine hesitancy and misinformation, and authorize a public campaign to highlight the importance of vaccines.
The recent uptick in the number of unvaccinated children around the country is largely due to a rise in the spread of vaccine misinformation and vaccine hesitancy, which the World Health Organization (WHO) deemed one of the ten biggest threats to global health in 2019. The VACCINES Act of 2019 is a critical step in combatting vaccine hesitancy and misinformation and ensuring that there is continued public awareness of the importance of vaccinations.
Patient-Centered Care Strategies, March 2019: A Cancer Leadership Council letter proposing recommendations to improve treatment decision-making from diagnosis through survivorship, including supporting the Cancer Care Planning and Communications Act:
We have two recommendations for Congressional action to foster cancer care planning and coordination and to ensure the efficient use of cancer care resources: 1) enactment of the Cancer Care Planning and Communications Act (HR 5160 in the 115th Congress and soon to be reintroduced in the 116th Congress) and 2) continuation of the Oncology Care Model demonstration model for its full five-year test. These efforts – one aimed at improving payment and delivery in the fee-for-service Medicare program and the other a test of an episode-of-care pilot that includes treatment planning services and core navigation services – hold promise of ensuring the delivery of high-quality to cancer patients.
NIH and STAR Act Funding, March 2019: An Alliance for Childhood Cancer letter expressing support for the Administration’s efforts to boost childhood cancer research opportunities, and asking for funding to implement the Childhood Cancer STAR Act and to fully support NIH and NCI’s crucial ongoing work.
The Administration’s new childhood cancer research proposal has the potential to make meaningful progress for childhood cancer patients across the country, but this proposal cannot be implemented at the expense of NIH’s and NCI’s broader budget.
The Alliance for Childhood Cancer and the broader childhood cancer community also care deeply about the implementation of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, the most comprehensive childhood cancer legislation considered by Congress. This important legislation, which was fully funded for FY19, authorizes $30 million in new resources for the NIH and Centers for Disease Control (CDC) to expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences and enhance the quality of life for childhood cancer survivors. This was a hard-fought victory for our community, and we strongly encourage the Administration to use its new childhood cancer research initiative to build on the work already underway by NIH and the CDC to implement the Childhood Cancer STAR Act.
Peer Reviewed Cancer Research Program, Spring 2019: An Alliance for Childhood Cancer letter in support of an increase to $120 million for the Peer Reviewed Cancer Research Program and the continued inclusion of pediatric brain tumors and neuroblastoma as eligible topics of funding under the program.
In addition, we support the addition of a new line-item under the Congressionally Directed Medical Research Program to fund additional research for cancer in children, adolescents and young adults provided the PRCRP remains a key focus.
ACE Kids Act of 2019, March 2019: A letter thanking Congressional leaders for incorporating the ACE Kids Act into the Medicaid Services Investment and Accountability Act of 2019.
Children with complex medical conditions have chronic life-limiting illnesses and disabilities, and often see six or more specialists and a dozen or more physicians. Under the current Medicaid system, parents of children with multiple, life-threatening disabilities struggle to coordinate the complex care of their kids, which often requires travelling to out-of-state providers. The ACE Kids Act works to create a patientcentered, pediatric-focused delivery system for this unique population of children. It is an important step in fixing the current fragmented system for children with complex medical conditions, ensuring ready access to care and reducing the burden on their families.
HHS Notice of Benefit and Payment Parameters for 2020, February 2019: A Cancer Leadership Council letter expressing concerns about provisions of the Notice of Benefit and Payment Parameters for 2020 that may threaten cancer patients’ access to quality care and urging reconsideration of certain provisions of the proposal.
CLINICAL TREATMENT Act, February 2019: A community letter thanking Reps. Ben Ray Lujan and Gus Bilirakis for introducing H.R. 913, the CLINICAL TREATMENT Act and endorsing this legislation, which would ensure that states cover routine care costs of participating in approved clinical trials for Medicaid enrollees with life-threatening conditions.
Medicaid insures nearly one-fifth of the US population and is the only major payer that is not required by federal law to cover routine costs associated with participation in clinical trials. This coverage is already assured for Medicare beneficiaries and for patients with private health insurance. Although twelve states require their Medicaid programs to cover these costs, there are still as many as 42.2 million Medicaid patients that are potentially without this needed coverage.
Government Shutdown’s Impact on FDA, January 2019: A community letter sent to the President, Speaker Pelosi, and Leaders McConnell, McCarthy and Schumer regarding the ongoing partial shutdown of the government and its impact to the Food and Drug Administration (FDA), asking Congress to act immediately to bring the FDA back to full operating capacity.
On behalf of patients across this country, we are greatly concerned that the agency is currently not fully funded, and thousands of vital FDA employees are not working or able to operate at full capacity. While we applaud Commissioner Gottlieb, FDA leadership, and “essential staff” for truly heroic work to keep many aspects of its mission functioning, we fear that this continued shutdown not only puts the current health and safety of Americans at risk, but has begun to put future scientific discovery and innovation in jeopardy.
The ongoing government shutdown forces the FDA to make difficult choices regarding to which essential functions its greatly reduced resources are directed. These are decisions that never should have to be made— the health and safety of Americans today should never be weighed against the prospect of new life-saving therapies for patients. Tragically, that is what is happening.
Court Ruling on ACA Constitutionality , December 2018: A Cancer Leadership Council letter commenting on the decision of a federal district court judge declaring the Affordable Care Act unconstitutional.
Our organizations, representing the millions of Americans diagnosed with cancer, express serious concerns about the decision that invalidates the Affordable Care Act. This ruling would eliminate the protections that are critical to people with cancer, including pre-existing condition protections, benefit standards, and cost-sharing protections. These are the provisions of the Affordable Care Act that have protected access to adequate and affordable health insurance for people with cancer.
The decision of the federal district court takes us back to a time before the Affordable Care Act when people with cancer were routinely denied insurance.
Our first act will be to communicate to people with cancer that the law will remain in place pending appeal. Those who purchase insurance through the exchanges and those who are covered by Medicaid can rest assured that their coverage is protected during the appeal process. And all Americans who benefit from the consumer protections of the Affordable Care Act will continue to enjoy those protections.
CLINICAL TREATMENT Act (CLC), December 2018: A Cancer Leadership Council letter to Representatives Bilirakis and Lujan expressing strong support for H.R. 6836, the CLINICAL TREATMENT Act.
This legislation will require that Medicaid programs cover the routine patient care costs for those who are enrolled in clinical trials. We have been engaged for many years in advocacy to ensure third-party payment for care provided in clinical trials, and we applaud your efforts to set this standard of coverage for Medicaid recipients.
MODERN Labeling Act (Friends of Cancer Research), November 2018: A coalition letter to Senate leaders requesting passage of the Making Objective Drug Evidence Revisions for New Labeling Act (S.3519).
Senators Orrin Hatch (R-UT) and Michael Bennet (D-CO) have introduced S. 3519, the MODERN Labeling Act. The bill addresses a discrepancy that can occur when new scientific information relevant to a drug’s indication is not incorporated into its label. This often occurs to generic drugs, particularly those whose reference listed drug (RLD) has been removed, which leaves an inaccurate or incomplete generic drug label “frozen in time”. The legislation addresses this issue by giving the FDA the authority to require updating of generic drug labels where the RLD has been removed to reflect new information relevant to the drug and its use. This Act also determines a process through which the FDA can identify labels to be updated, notice label holders, and allows for a process for label holders to submit modifications to the notice.
Clinical Treatment Act (CCCA), October 2018: Our letter to Representatives Bilirakis and Luján in support for the Clinical Treatment Act (HR 6836) to require states to cover the routine costs of participation in an approved clinical trial for Medicaid enrollees.
Medicaid is the only major payer that is not required to provide this coverage as they do not require state programs to provide coverage for the routine costs of clinical trials participation. However, Medicaid insures nearly one-fifth of the U.S. population, and the absence of a federal requirement limits pediatric patient access to cancer treatments that are often the best clinical option.
Medicaid is a primary source of coverage for many children with cancer. Failure to address the coverage barrier that Medicaid pediatric patients face imposes access, clinical and financial burdens that could affect overall care. We applaud your efforts to resolve this issue.
Budget Conference Report (OVAC), September 2018: A letter from the One Voice Against Cancer coalition urging Congress to support cancer research and prevention efforts in FY2019 appropriations.
To continue the progress that has led to medical breakthroughs for treatment and therapies for millions of cancer patients, NIH and NCI need an increased, sustainable federal investment. OVAC therefore believes that Congress should approve at least a $2 billion increase for NIH, and $6.147 billion total for NCI, as reflected in the Senate-passed HR 6157.
OVAC is concerned that funding for cancer prevention and control programs at the Centers for Disease Control and Prevention (CDC) has basically remained flat since FY 2010. Accordingly, we requested increases for each of those programs in FY 2019. We ask that, at a minimum, conferees approve the increase of $2 million for cancer registries and the $875,000 increase for skin cancer programs in the Senate-passed bill.
ACE Kids Act, September 2018: A coalition letter from children’s health organizations in support of The Advancing Care for Exceptional Kids Act of 2017.
Under the ACE Kids Act, specially-designed health homes created for children with complex medical conditions would employ national quality standards and coordinate care — both essential to improving overall quality of care. These health homes will include the full range of acute, post-acute and primary care providers, and will focus on outpatient care to ensure children get the care that they need in the most appropriate setting closest to home while reducing unnecessary hospitalizations and emergency room visits. The ACE Kids Act — which is voluntary for states, families and providers — will also help families access the array of outpatient and community services and supports needed by these children.
FDA Biosimilars (CLC), September 2018: A Cancer Leadership Council coalition letter offering formal comment on the Biosimilars Action Plan: Balancing Innovation and Competition and the proceedings of the public meeting on biosimilars held on September 4, 2018.
The cancer organizations below are dedicated to a system of cancer care that supports informed decision-making about cancer treatment and includes access to adequate and accurate information supporting patient-centered treatment decisions. For some patients, adequate data and appropriate diagnostic testing support the choice and delivery of targeted therapies. For others, information about their treatment regimen is critical to developing a plan for managing cancer as a chronic disease, including appropriate symptom management. Information about biosimilars that is accessible to the patient will support informed decision-making and long-term management of cancer and treatment side effects.
We note that biosimilar communications efforts to date have focused on overall understanding of biosimilars and their regulatory review. These are important efforts, but we recommend product-specific efforts that will inform patient decision-making. Such educational materials might address whether a product is a biosimilar or also an interchangeable product.
FY2019 FDA Funding, July 2018: An Alliance for a Stronger FDA coalition letter thanking appropriations leaders for supporting a strong budget for the Food and Drug Administration in FY2019.
In this appropriations cycle, House appropriators have recommended $150 million more than the Senate. We support the higher levels of the House version, as well as the Senate’s proposals for certain accounts--including critical funding for food safety that was not in the House bill and larger increases in monies for generic drugs and combating opioid abuse. We respectfully urge you to provide robust funding that includes the higher funding levels that are proposed in the House and Senate bills and ensure that the FDA has the flexibility to use appropriations wisely.
STAR Act Funding, June 2018: A coalition letter urging Senate appropriations leaders to provide $30 million in FY2019 to fully fund the Childhood Cancer STAR Act.
We are very grateful for your support of the Childhood Cancer STAR Act and we hope you will provide the necessary funding for the coming fiscal year to ensure that these vital programs can be implemented to help children and the clinicians, researchers and parents who care for them, fight cancer.
Right to Try (CLC), May 2018: A letter from the Cancer Leadership Council opposing House consideration of the Trickett Wendler, Frank Mongiello, Jordan McLinn and Matthew Bellina Right to Try Act (S.204).
Our organizations have in recent months expressed serious reservations about Right to Try legislation, because we were concerned that the measures could expose patients to harm unnecessarily. The current Food and Drug Administration expanded access program results in approval of virtually all requests for access to unapproved therapies, so removing the agency from the review of such requests is not necessary [...and] could put patients at risk due to unsafe and ineffective experimental therapies.
Despite our fundamental misgivings about the Right to Try legislative effect, we have acknowledged that the House or Representatives-passed version of the bill (H.R. 5247) incorporated some patient safeguards including more robust informed consent requirements, FDA oversight of the process, and a more well-defined definition of eligibility for the pathway to unapproved therapies.
The plan of the House of Representatives to consider the Senate-passed bill and essentially abandon its work in strengthening the Right to Try legislation is not in the best interests of the cancer patients and health care professionals we represent. This step moves in exactly the wrong direction.
FY2018 Research Funding (Caucus), March 2018: A letter from the co-chairs of the Congressional Childhood Cancer Caucus urging Appropriations Committee leaders to consider funding priorities around medical research and childhood cancer, specifically support for COG, the Office of Cancer Survivorship, and FDARA.
We support robust funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) and emphasize the importance of a greater focus on pediatric cancer research.
FY2019 Research Funding (OVAC), March 2018: A letter from the One Voice Against Cancer coalition urging appropriations leaders to make funding for cancer research and prevention programs a top priority in FY2019.
Thanks to your leadership, significant progress has been made to reduce the loss of purchasing power experienced by NIH and NCI since FY2003, the end of the five-year doubling of NIH. However, NIH funding still lags behind what it would have been if funding had simply kept up with biomedical inflation. To continue the progress that has led to medical breakthroughs for treatment and therapies for millions of cancer patients NIH and NCI need an increased, sustainable federal investment.
FY2019 Research Funding (Alliance), March 2018: An Alliance for Childhood Cancer letter urging appropriations leaders to consider funding priorities and specific report language that help make childhood cancer a national child health priority.
We join with the leading national cancer organizations in requesting the following funding levels for medical research: $2 billion increase for NIH plus a $215 million increase from 21st Century Cures funding for a total of over $38 billion; Over $400 million increase for NCI for a total of over $6.2 billion. 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.
NIH and CDC Funding, February 2018: A One Voice Against Cancer coalition letter urging Congress to provide the highest possible 302(b) allocation to the Labor, Health and Human Services, and Education Appropriations Subcommittee, and to increase funding for the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC).
CCPC Act, January 2018: A coalition letter supporting the Cancer Care Planning and Communications (CCPC) Act, aimed at fostering shared decision-making and cancer care coordination.
STAR Act, January 2018: An Alliance for Childhood Cancer letter to Senate HELP Committee leaders requesting the HELP Committee advance the Childhood Cancer STAR Act so it can reach the Senate floor for a vote.
The Childhood Cancer STAR Act will help advance research into better treatments and cures for kids with cancer, and will vastly advance the research into long-term survivorship for children. Thank you for your strong support, and we look forward to working with you to get the Childhood Cancer STAR Act signed into law.
CHIP Extension, December 2017: A letter from over 1,000 public health organizations urging Congress to immediately enact a strong, five-year extension of the Children's Health Insurance Program.
CHIP funding expired almost three months ago on September 30, 2017 and as federal funding to the states is running out, families across the country are receiving disenrollment notices and face an uncertain future about their children’s health care just as they enter the holiday season. No family should feel the fear and worry of whether or not their child will have health care coverage.
Innovation Center at the Centers for Medicare & Medicaid Services, November 2017: A Cancer Leadership Council letter offering comment on the Innovation Center, specifically focused on strategies for testing new models of patient-centered care that may be complementary to the Oncology Care Model (OCM).
Medical Expense Deduction, November 2017: A coalition letter urging Congress to protect the medical expense deduction in any version of tax reform legislation.
For the past 75 years, Americans with high health care costs have been able to deduct medical expenses from their taxes. For the approximately 8.8 million Americans who annually take this deduction, it provides important tax relief which helps offset the costs of acute and chronic medical conditions for older Americans, children, pregnant women and other adults...
CHIP Funding, November 2017: An Alliance for Childhood Cancer letter urging an immediate bipartisan agreement to reauthorize Children's Health Insurance Program (CHIP).
On behalf of the over 15,000 children and adolescents who will be diagnosed with cancer this year, and the almost 500,000 childhood cancer survivors living in the U.S., we write to urge you to protect the needs of these children and those who will be diagnosed in the years to come and to pass legislation that would extend the CHIP program’s current level of funding for the next five years and maintain its bipartisan history. ... CHIP plans include robust networks of pediatricians, pediatric medical and surgical subspecialists, and children's hospitals, which are especially critical for children with special health care needs including cancer.
Increase Funding for NIH, October 2017: A One Voice Against Cancer (OVAC) letter urging Congress to raise the FY2018 budget caps and enact spending bills that increase funding for the NIH.
As members of OVAC, we are grateful for the leadership you have shown by supporting recent increases in NIH and cancer research funding, including passage of the 21st Century Cures Act last year. However, we are concerned that the current discretionary budget caps will hinder American medical breakthroughs, including the field of cancer research, and jeopardize our competitiveness in the global arena, to the detriment of both business innovation and the lives of our citizens. A bipartisan agreement to lift the budget caps will help provide the NIH and CDC with greater resources to pursue life-saving advances in cancer research and prevention.
Graham-Cassidy ACA Repeal Bill, September 2017: A Cancer Leadership Council (CLC) letter opposing the Graham-Cassidy-Heller Johnson legislation to repeal and replace the Affordable Care Act. The CLC sent a letter to Senators expressing serious concern that the legislation would adversely affect the ability of cancer patients to obtain affordable and adequate insurance coverage and appropriate cancer treatment. Children's Cause joins the CLC in urging the Senate to reject the Graham-Cassidy legislation and to continue bipartisan efforts to stabilize the health insurance markets.
Every segment of the cancer patient population — children with cancer, those diagnosed with cancer as older adults, those diagnosed with a second cancer, and adolescents, young adults, and older adults who are facing long-term survivorship — will be harmed by Graham-Cassidy. They will confront challenges in obtaining access to affordable and adequate insurance in a system of block grants with funding shortfalls and in which benefit, cost, and cost-sharing protections are compromised.
Proposed NIH Funding Cuts, August 2017: A community letter to OMB and HHS officials expressing opposition to the Administration's proposed budget cuts to NIH for the 2018 fiscal year.
The undersigned organizations representing patients, researchers, clinicians, and research institutions write to express our strong opposition to the Administration’s proposal to cut $7.2 billion, or 21 percent, from the National Institutes of Health (NIH) budget in fiscal year (FY) 2018, including the proposal to drastically reduce NIH support for facilities and administrative (F&A) expenses (also referred to as “indirect costs”) for physical infrastructure and other essential research costs.
...a cut to F&A reimbursements is a cut to biomedical research and would diminish the ability of researchers to conduct critical research. If the Administration’s proposal to reduce NIH support for F&A moves forward, it will make research unaffordable for many institutions and ultimately lead to less research carried out across the country. This would harm the pace of progress for countering many of our most vexing diseases.
Pass a Clean 5-Year Extension of CHIP, August 2017: A Children's Cause letter to committee chairmen urging Congress to expeditiously enact a 5-year extension of the Children's Health Insurance Program (CHIP) before the current program expires on September 30, 2017.
Since its inception in 1997, CHIP, together with Medicaid, has helped to bring needed services to children with cancer and survivors. With CHIP funding set to expire on September 30, 2017, Congress must stabilize the CHIP funding stream and protect the gains in children’s health coverage that have resulted in more than 95 percent of all children in America being enrolled in some form of insurance coverage. ...
We urge our nation’s leaders to work together to enact a five-year extension of CHIP funding to ensure treatment and care for children with cancer and survivors. This is an important opportunity for meaningful, bipartisan action for young Americans facing life threatening illness.
Support Research at the Department of Defense, July 2017: A One Voice Against Cancer (OVAC) letter urging leaders of the Senate Armed Services Committee to support the bipartisan Durbin-Blunt amendment to the fiscal year 2018 National Defense Authorization Act (NDAA), which ensures critical cancer research continues at the Department of Defense.
"The [Congressionally-Directed Medical Research Program's] two-tiered grant review process is unique to the Federal Government, utilizing military program managers and patient advocates in addition to traditional peer-reviewers. This approach ensures that the DoD does not unnecessarily duplicate research funded by other institutions and, instead, aggressively complements that research by targeting critical gaps in science. The DoD’s strategic approach has produced results and is helping win the fight against cancer."
Extend the Children's Health Insurance Program (CHIP), June 2017: A letter from 1200 organizations urging Congressional leaders to focus on extending CHIP funding, which is currently set to expire on September 30, 2017.
"For two decades, CHIP has been an essential source of children’s coverage, ensuring access to high quality, affordable, pediatric-appropriate health care for children in working families whose parents earn too much to qualify for Medicaid but too little to purchase private health insurance on their own. It has strong bipartisan roots and was developed as a state-federal partnership that gives governors broad flexibility to design their programs to target the needs of their child populations.
CHIP is a model program that has played a critical role in reducing the number of uninsured children by more than 68 percent, from nearly 15 percent in 1997 to a record of less than five percent in 2015, while improving health outcomes and access to care for children and pregnant women. If Congress fails to act in a timely manner, the 8.9 million children enrolled in CHIP will be at risk of losing their health coverage. It is worth noting that the children who stand to lose CHIP would likely have no other affordable coverage option available to them. The resulting increase in the rate of uninsured children would be an enormous step backwards."
Thank You Letter on FY2017 Appropriations, June 2017:
"As members of One Voice Against Cancer (OVAC), a coalition of public interest groups representing millions of cancer researchers, patients, survivors and their families, we would like to thank you for making the fight against cancer a priority in the FY17 Omnibus Appropriations Act. We would especially like to thank you for continuing your pattern of providing the National Institutes of Health (NIH) and the National Cancer Institute (NCI) with robust funding increases, as well as protecting funding for the Centers for Disease Control and Prevention (CDC) cancer prevention and control programs."
FY2018 Budget, May 2017: A letter to Appropriations Committee members from more than 800 organizations representing constituents who are impacted by the Department of Labor and Health and Human Services activities.
"Without an increase in the Labor-HHS 302(b) allocation, it will be 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, or achieving the goals contained in the bipartisan Workforce Innovation and Opportunities Act —without deep cuts in other equally important initiatives. We urge you to commit to improving the lives of Americans by increasing the Labor-HHS appropriations allocation for FY 2018. More broadly, we remain eager to work with you to help produce another bipartisan budget agreement to stop sequestration and raise the caps for these and other nondefense discretionary programs."
July Update: While the House Appropriations Committee provided $5 billion less than current funding, the Senate held the funding level for the bill flat after changes to “Changes in Mandatory Programs” or CHIMPS. Neither allocation meets the health, education, and labor needs of the American people. OVAC sent letters to House and Senate appropriators calling for a deal to raise the budget caps to allow for an increased allocation.
Nomination of Dr. Gottlieb for FDA Commissioner, April 2017: A Cancer Leadership Council letter urging Congressional approval of the nomination of Dr. Scott Gottlieb as Commissioner of the Food and Drug Administration.
"Dr. Gottlieb will bring an important combination of skills and life experience to FDA. He has medical training and clinical experience, service in important federal government positions, knowledge and background related to research and development of new therapies, and the experience of a cancer survivor."
Medicaid & the American Health Care Act, March 2017: This letter to Congressional leadership from patient and provider advocacy organizations opposing the AHCA provisions that gut Medicaid funding.
"The proposed financing reforms are a fundamental shift away from Medicaid’s role as a safety-net for some of the most vulnerable members of our society. Repealing Medicaid expansion would leave millions without the health care they rely on. Our organizations represent and provide care for millions of Americans living with ongoing health care needs who rely on Medicaid and we cannot support policies that pose such a grave risk to patients."
NIH Funding, March 2017: A One Voice Against Cancer (OVAC) letter to Congressional leaders urging an increase to the NIH for the remainder of FY2017 and for FY2018.
"As a community, we strongly oppose the Administration’s $5.8 billion cut to the NIH. This cut would most likely lead to a $1billion cut in NCI funding making it the largest funding reduction in its history and set funding levels back nearly 20 years. The NIH and NCI are on the forefront in regards to research and innovation towards accelerating progress in preventing, diagnosing, and treating cancers. The proposed cuts would be extremely detrimental to the continuation of this work and to the lives of millions of Americans who have or will be diagnosed with cancer in their lifetimes."
RACE Act, March 2017: A letter from the Alliance for Childhood Cancer thanking the original Congressional co-sponsors of the Research to Accelerate Cures and Equity (RACE) for Children Act (S. 456/H.R. 1231).
"The RACE for Children Act recognizes the important need to improve the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) to maximize the development of cancer therapies specifically for children. Specifically, we are grateful for the recognition and accommodation of a broader interpretation of when pediatric cancer trials should be required. The Alliance helped develop similar recommendations in 2012 and since that time has sought the enactment of these provisions. These changes will improve the availability of therapeutic treatments for children with cancer."
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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."