Policy positions that GO2 for Lung Cancer has taken in response to proposed legislative and regulatory actions that impact lung cancer patients and survivors.
2020
GO2 for Lung Cancer joins OVAC in leading a request in the FY 2021 Appropriations Bill to ask Congress to maintain separate funding line items for lung and other cancers included in the bill. (December)
GO2 for Lung Cancer co-led the All Cancers Coalition sign on letter, urging Congress to enactment the FY21 Appropriations Act, with support for the requested amount for all medical research programs, such as lung cancer that is within the CDMRP. (December)
GO2 for Lung Cancer joined the Ad Hoc Group For Medical Research on a letter regarding NIH Priorities to the President-elect Biden. (December)
GO2 for Lung Cancer signed onto OVAC’s Memo to the Biden-Harris Transition Team about the coalition’s cancer priorities with a recommendation that President-elect Biden work with Congress in addressing key concerns: (December)
- ADDRESSING CANCER HEALTH DISPARITIES THROUGH CANCER RESEARCH AND PREVENTION
- COVID-19 IMPACTS CANCER RESEARCH AND PREVENTION
- UNMET DEMAND FOR GRANT FUNDING AT NCI
GO2 for Lung Cancer signs onto the One Voice Against Cancer Coalition Appropriations Conference Letter to advocate for sustained funding increases for cancer research and prevention. (November)
GO2 for Lung Cancer writes to the Appropriations Committees on its Conference of the FY21 Defense Appropriations bill to specifically request that the Lung Cancer Research Program (LCRP) be funded at $20 million, as passed in the House FY21 Defense Appropriation bill. (November)
GO2 for Lung Cancer endorses S.4393, The Toxic Exposure in the American Military (TEAM) Act, which creates sweeping mandates for the Department of Veterans Affairs to further research, track and care for eligible veterans. (October)
GO2 for Lung Cancer endorses H.R. 8261, The Presumptive Benefits for War Fighters Exposed to Burn Pits and Other Toxins Act of 2020 because it lists a number of diseases, including all forms of cancer and lung diseases that would be given automatic presumption of service connection associated with the disease for veterans exposed to burn pits and other toxins. (October)
GO2 for Lung Cancer joins over 80 organizations among telehealth supporters in a letter to the Drug Enforcement Administration (DEA) calling on the DEA to finalize the special registration for telemedicine with the goal of increasing patient’s access to practitioners who can prescribe via telehealth in limited circumstances. (October)
GO2 for Lung Cancer endorses S. 4742, the CLINICAL TREATMENT Act. We are pleased to endorse the companion to the House Bill, which if passed will ensure that states cover routine care costs of participation in an approved clinical trial for Medicaid enrollees with life-threatening conditions, such as cancer. (October)
GO2 for Lung Cancer joins the Defense Health Research Consortium on a letter sent to House and Senate leadership, calling on them to work toward the enactment of the fiscal year 2021 Defense Appropriations Act, to ensure that the Defense Health Research Programs, including the Congressionally Directed Medical Research Programs (CDMRP), are fully funded in fiscal year 2021. (September)
GO2 for Lung Cancer joins other cancer advocacy groups in seeking assurance that the guideline adopted in Starr county, Texas will comply with all applicable federal laws by neither denying nor disparately impacting cancer patients’ rights to receive potentially life-saving treatment due to their disability, during the COVID-19 pandemic. (August)
GO2 for Lung Cancer signs onto a letter as the Department of Health and Human Services (HHS) works to implement President Trump’s recent executive order on Improving Rural Health and Telehealth Access, to urge consideration on policies that increase patient access to anticancer therapies, such as oral cancer medications. (August)
GO2 for Lung Cancer signs onto a letter in support of the Quit Because of COVID-19 Act to ensure that all Medicaid and CHIP enrollees have access to the full array of tobacco cessation treatments at this critical time. (August)
GO2 for Lung Cancer joins national organizations to advocate for comprehensive health coverage in a letter to urge Congress to save jobs and promote economic recovery by prioritizing comprehensive health coverage in the next COVID-19 legislative package. (August)
GO2 for Lung Cancer developed formal comments in response to the recent USPSTF Draft Recommendation for Lung Cancer Screening. The new USPSTF draft recommendation proposes expanding the screening eligibility criteria for those at high risk for lung cancer. The USPSTF target timeline for publishing their final recommendation is approximately 9 months following their review of public comments and an internal vote. For background information, GO2 for Lung Cancer posted an article earlier this month and are planning to provide more details in a future article. We will closely monitor the USPSTF website and will announce once the final USPSTF recommendation is published. (August)
GO2 for Lung Cancer signed onto a letter of endorsement for the Protecting Access to Post-COVID-19 Telehealth Act of 2020 (HR 7663). (August)
GO2 for Lung Cancer signed onto a letter that asks Congressional leadership to address out-of-pocket (OOP) costs in Medicare Part D to help ensure Medicare patients can access their medically necessary medicines. (July)
GO2 for Lung Cancer signed onto a letter urging the administration (the White House Coronavirus Task Force) to reverse its decision to bypass the Centers for Diseases Control and Prevention in the collection of COVID-19 patient data. (July)
GO2 for Lung Cancer signed onto a letter to Congress requesting $300 million in supplemental funding for the NIH’s National Heart, Lung, Blood Institute (NHLBI) to respond to the COVID-19 pandemic. (July)
GO2 for Lung Cancer opposes the inclusion of lung cancer drugs in the 2020 National Preferred Formulary Exclusion list released by Express Scripts. (July)
GO2 for Lung Cancer comments on a number of provisions included in the Cures 2.0 concept paper along with specific recommendations on CMS Modernization, based on our experience advocating for the coverage of lung cancer screening. (June)
GO2 for Lung Cancer signed onto a letter to expand access to telehealth services during the COVID-19 public health emergency (PHE) by providing the Department of Health and Human Services (HHS) and the Centers for Medicare & Medicaid Services (CMS) the authority to waive longstanding restrictions on Medicare telehealth services and ensuring that additional types of health care providers can furnish telehealth services during the pandemic. (June)
GO2 for Lung Cancer joined ACS CAN and national organizations in urging HHS and OCR to continue to make clear that any plan for allocating scarce medical resources during the present emergency, or any future one, ensures that all patients—regardless of underlying conditions—are equally eligible for treatment based on their current clinical presentation. (May)
GO2 for Lung Cancer joined other national organizations on a letter to Congress to express our strong support for H.R. 5741, the “Strengthening Innovation in Medicare and Medicaid Act.” We urge Congress to take action expeditiously to ensure the Center for Medicare and Medicaid Innovation (CMMI) operates as intended and develops value-based projects that protect patients and ensure access to efficient, high quality care. (May)
GO2 for Lung Cancer joined ASCO on a letter to Congress, urging the inclusion of the 21st Century Cures 2.0 Title IV Provision –addressing disparities in clinical trials and the CLINICAL TREATMENT Act in the next COVID stimulus package. (May)
GO2 for Lung Cancer joined national organizations in requesting funding in the next COVID Stimulus Bill to assure stalled research supported by non-profit organizations, voluntary health associations, science societies, and foundations, can resume once researchers return to their labs. (May)
GO2 for Lung Cancer co-led a letter to state governors. The letter request to further relax refill on prescription medications and timing limits by requiring ALL payers to allow for the provision of an emergency supply of medications to the CDC recommended up to 90 days. In addition to access, we advocate for affordability and flexibility with mail-order pharmacies and other home deliveries and to waive prior authorization and utilization management requirements. (May)
GO2 for Lung Cancer signed onto the National Coalition for Hospice and Palliative Care (NCHPC) letter to the NIH regarding COVID-19 Treatment Guidelines. The letter respectfully request the opportunity to provide evidence-based and expert palliative care content for inclusion in the NIH COVID-19 Treatment Guidelines. (May)
GO2 for Lung Cancer signed onto a Families USA Letter to ensure all individuals have access to testing and treatment, equip states, territories and localities with sufficient financial resources, support to healthcare workers and protection from high and unexpected healthcare costs. (April)
GO2 for Lung Cancer co-signed and co-led a letter that was sent to all 50 governors and state health directors seeking assurance that any COVID-19 triage plans developed to prepare for the possibility of insufficient resources do not discriminate against cancer patients who are protected by the Americans with Disabilities Act (ADA). (April)
GO2 for Lung Cancer joined the Consortium for Citizens with Disabilities (CCD) on a letter to the Department of Treasury, Social Security Administration and Veterans Affairs to express concern by the unexpected short deadline to claim economic impact payments- the IRS deadline threatens stimulus payments for recipients of Social Security, railroad retirement benefits, Supplemental Security Income (SSI), and certain veterans’ pension and disability benefits. (April)
GO2 for Lung Cancer joined other Disability and Patient Organizations on a letter to the U.S. Department of Health and Human Services and the Office for Civil Rights to call for further guidance on COVID-19 patient non-discrimination. (April)
GO2 for Lung Cancer signed onto a cancer community letter to Leadership on Capitol Hill and to Secretary Azar that addresses both legislative and regulatory policy issues impacting our patients during the COVID-19 crisis. The letters address oral chemo parity, 90-day supply of medications, personal protective equipment, access to care, and clinical trials. (April)
GO2 for Lung Cancer signed onto a letter directed to the Office of Civil Rights (OCR) at the U.S. Department of Health and Human Services. The letter urges the office to ensure that decisions about how medical treatment is allocated are made without discriminating. It further requests the office to develop and release detailed guidance on how medical resources should be fairly allocated during the COVID-19 pandemic as soon as possible. (April)
GO2 for Lung Cancer signed onto a letter to advocate for the priorities of the Deadliest Cancers Coalition. (April)
GO2 for Lung Cancer signed onto a House Letter and Senate Letter to advocate for Defense Health Research Programs, which includes lung cancer research. (April)
GO2 for Lung Cancer signed onto a letter on “Expanded Family and Medical Leave” to urge Congress to expand eligibility for the paid family and medical leave program to include individuals determined by the Centers for Disease Control and Prevention (CDC) to be at high risk for adverse complications from COVID-19 and working members of their households. (April)
GO2 for Lung Cancer submitted joint comments to the Department of Health and Human Services and the Centers for Medicare and Medicaid Services regarding patient access to home infusions medications and therapies during this pandemic with COVID-19 and safe distancing compliance. These joint comments were in follow up to the COVID-19 legislative package letter and our collaborative efforts around the urgent need for a home infusion provision. We are pleased to see Secretary Azar’s letter to the nation’s Governors dated March 24th, urging an “all hands on deck” approach and specifically requesting fewer restrictions to permit broader access to care in patients’ homes. (April)
GO2 for Lung Cancer sent a letter to Congressional Leaders with a copy to Secretary Azar (HHS) to recommend specific actions in response to the growing concerns about pre-existing conditions and disability discrimination in access to treatment during the COVID-19 crisis. (April)
GO2 for Lung Cancer joins the Disabilities Community in support of Guiding Principles to avoiding discrimination in treatment rationing during the COVID crisis. (April)
GO2 for Lung Cancer joins national and state groups on a letter, during the drafting of the CARES Act (stimulus bill) to strongly urge Congress to provide direct state aid to states for fiscal relief as they respond to COVID-19. (March)
GO2 for Lung Cancer signs onto a letter to President Trump requesting that he not take any action that would destabilize the health care supply chain at this time of crisis. (March)
GO2 for Lung Cancer signs onto the National Health Council Charitable Organization COVID-19 Relief Letter. Given the prospective federal intervention to support the airline, travel, and other targeted industries impacted by the coronavirus (COVID-19) epidemic. GO2 add its voice to urge Congress to also include nonprofit patient advocacy organizations within any federal aid packages or supplemental appropriations measures. (March)
GO2 for Lung Cancer supports the Haystack Project Letter to Congress, an umbrella group of ultra-rare patient organizations, including rare cancers Policy Coalition to provide immediate and needed relief for patients who typically rely on Medicare Part B settings of care for their infusion treatments. (March)
GO2 for Lung Cancer signs onto a group letter to urge the Department of Health and Human Services (HHS) to create a Special Enrollment Period (SEP) in response to COVID-19. (March)
GO2 for Lung Cancer writes to the White House Administration and Congressional Leaders in response to the novel Coronavirus COVID-19 public health crisis to underscore the specialized needs of the tens of millions living with and at risk for lung cancer. GO2 for Lung Cancer makes policy recommendations to: remove barriers to patient care, medication access & supply, state & medicaid relief, access to coverage & patient care, expanding telehealth services, non-profit organization support and request more flexibilities to continue life-saving research. (March)
GO2 for Lung Cancer signed onto a letter urging Congress, its Committees of Jurisdiction along with the Administration Task Forces to include provisions regarding access to medications for all people of all ages in the third legislative package addressing COVID-19. (March)
GO2 for Lung Cancer added its voice to the National Health Council’s Charitable Organization COVID-19 Relief Letter to urge Congress to include nonprofit patient advocacy organizations within any federal aid packages or supplemental appropriations measures. (March)
GO2 for Lung Cancer joined more than 260 civil rights and advocacy organizations in a letter to Congress to denounce Coronavirus Racism against the Asian American Community. The letter urged House and Senate leadership to pass a joint resolution denouncing the racism, xenophobia, and misinformation surrounding it and ensure that violent racism and economic loss, rooted in fear and misinformation is mitigated. (March)
GO2 for Lung Cancer supports a letter calling for an immediate mandatory federal standard for infectious disease with specific recommendations to prevent the rapid spread of the Coronavirus to health care workers, including, first responders at the forefront of exposure to the coronavirus. (March)
GO2 for Lung Cancer sent a letter to California Assemblywoman Lorena Gonzalez to express interest and support for proposed legislation AB 2640, a bill that would amend the language of the Insurance Code to prohibit from requiring prior authorization for genetic biomarker testing along with specific recommendations for coverage of comprehensive biomarker testing for cancer patients. (March)
GO2 for Lung Cancer sends a companion letter to the California Health Benefits Review Program regarding AB 2640. We advocate to advance precision medicine and the removal of access barriers to specialty care, comprehensive biomarker testing by specifically prohibiting prior authorization as a utilization management tool for biomarker testing. (March)
GO2 for Lung Cancer joined Friends of Cancer Research on a letter endorsing the MODERN Labeling Act, introduced by Rep. Matsui (D-CA) and Rep. Guthrie (R-KY) as H.R. 5668 to have the FDA keep up to date drug labels. (March)
The Campaign for Tobacco Free Kids print ad ran in Politico the week of February 24 in support of prohibiting all flavored tobacco products and urging members of Congress to support the Reversing the Youth Tobacco Epidemic Act, HR 2339. (February)
GO2 for Lung Cancer signed onto the Health Innovation Alliance letter in support of the National Telehealth Strategy and Data Advancement Act to further the case for removing barriers to the utilization of telehealth. (February)
2019
GO2 for Lung Cancer joins other patient groups in a letter urging Congress to reverse action that will have unintended consequences on out of pocket costs for Medicare beneficiaries. Currently, out of pocket costs are limited due to catastrophic coverage when a patient pays 5% the cost of the drugs in Part D for the remainder of the year, but because of changes, this year, the out of pocket threshold will increase by more than $1,000. GO2 for Lung Cancer and other organizations believe this will increase out of pocket costs on so many patients and lead to patients abandoning therapies and treatment.
GO2 for Lung Cancer joins other patient advocacy organizations by signing on to a comment letter in response to the proposed Tennessee Medicaid program changes. GO2 for Lung Cancer opposes its proposal to change its formulary for coverage of drugs. If implemented, the formulary would allow Tennessee to cover only one drug in each therapeutic area, limiting access to drugs that would otherwise be deemed most valuable to patients
GO2 for Lung Cancer sends a letter to the congressional authors of Cures 2.0; a follow up to the 21st Century Cures Act, first enacted five years ago. GO2 for Lung Cancer is urging Congress to build upon legislation and consider the specialized needs of the lung cancer community in Cures 2.0. GO2 for Lung Cancer has developed key recommendations that consider improvements in several key areas including; patient valued care delivery, Preventive Services—Early Detection and Treatment for Lung Cancer, precision medicine, clinical trials, telehealth, and financial resources. (December)
GO2 for Lung Cancer sends a letter to the Georgia Department of Health Commissioner in opposition of its current Medicaid waiver. While the waiver intends to expand coverage to a larger population of Georgia residents, GO2 for Lung Cancer is concerned with a proposal to include a monetary surcharge for individuals who have reported smoking in the last year. GO2 for Lung Cancer encourages Georgia to expand Medicaid coverage, but asks to rescind its proposal that will discourage enrollment and adequate access to life-saving care. (December)
GO2 for Lung Cancer joins other organizations in providing comments on a proposed decision memo on Next Generation Sequencing (NGS) for Medicare beneficiaries with Advanced Cancer. CMS is reconsidering a National coverage Decision made last year that intended to expand coverage for genetic testing of the tumor, it gave guidance for Medicare Advantage Contractors to include coverage policy for hereditary risk of cancer, but did not provide any coverage policy for using NGS to test hereditary cancer for early-stage cancer patients. CMS opened a comment period in response to the new proposed decision. GO2 for Lung Cancer expressed concern that the new policy proposal still lacks clarity for its coverage of hematological malignancies and requests that clarity in the proposal be made to ensure Medicare beneficiaries with hematological diseases have access to tests using NGS technology. (December)
GO2 for Lung Cancer joins other organizations working in science, technology, engineering and medicine in a letter urging congress to complete its FY 2020 Appropriations bill to fulfill funding for research and development programs across multiple agencies. A complete appropriations package is crucial addressing the nation’s fundamental challenges including chronic and infectious diseases and national security. (December)
GO2 for Lung Cancer extends its support with other organizations in a letter to Senate leadership for the current nominee for Commissioner of the Food and Drug Administration (FDA). As Chief Medical Executive at The University of Texas MD Anderson Cancer Center; Dr. Stephen Hahn has knowledge as well as firsthand expertise of patient needs and a deep understanding of the breadth of work that needs to be achieved on their behalf. GO2 for Lung Cancer believes that due to his background, he will ensure FDA continues to exceed in science and innovation. (December)
GO2 for Lung Cancer and other cancer patient organizations share a collective voice in a letter to Congress urging the passage of a final FY 2020 appropriations package. Specifically, the letter urges that funding for NIH, NCI, and CDC is ensured so that programming, research, and grants continue in the next year. (December)
GO2 for Lung Cancer joins other state and national organizations by sending a letter to the California Air Resources Board to strengthen the proposed Advanced Clean Trucks rule to accelerate the widespread adoption of zero-emission vehicles in the medium and heavy duty truck sector and reduce the amount of harmful emissions generated from on-road mobile sources. Go2 Foundation urges the Board to accelerate the rule and deploy hundreds of thousands of zero emission trucks to reach zero emission standards and improve health benefits statewide. (November)
GO2 for Lung Cancers joins the American Lung Association on a letter to the California Air Resources Board in support of the “Proposed Vessels At Berth Rule to Address Unacceptable Health Risks” proposal. This proposal extends existing requirements for reducing pollution by expanding the types of ships that will be required to achieve 80 percent emission reductions by 2020. If enacted, the rule has the potential to reduce cancer risks due to at-berth ship pollution by approximately 60 percent near California ports. (November)
GO2 for Lung Cancer joins others in a letter to U.S. House and Senate leadership expressing continued support for a long-term reauthorization of Patient-Centered Outcomes Research Institute (PCORI). GO2 for Lung Cancer strongly believes in the positive impact PCORI has on our health care system, specifically older adults and the Medicare population. But, GO2 for Lung Cancer is concerned about the lack of new funding and the uncertainty surrounding short-term extensions will mean for PCORI’s ability to fund new research and the negative impact it will have on their ability to manage programs and ongoing operations. (November)
GO2 for Lung Cancer joins other organizations in a letter to Secretary Azar and a letter to First Lady, Melania Trump, urging the White House Administration to continue with its proposal to ban all non-tobacco-flavored e-cigarettes. As the White House considers exempting mint and menthol flavored e-cigarettes, Go2 Foundation strongly supports a ban of all flavors without any exemption, to avoid cigarette and nicotine additions among our youth. (October)
GO2 for Lung Cancer sends a letters of endorsement to Representative Bonamici and Senator Merkley for H.R. 1603 and S.717, the Alan Reinstein Ban Asbestos Now Act of 2019. While studies reveal that exposure to asbestos fibers is linked to an increased risk of lung cancer; full extent of that linkage and awareness of exposure to asbestos is limited. The new legislation aims to address that by requiring a comprehensive study into the risks of legacy asbestos in homes, schools, workplaces, and public places in an effort to ban imports and use of asbestos in the U.S. (October)
GO2 for Lung Cancer joins others in a letter to Senate leadership urging the Senate to adopt the funding levels passed by the House for the Department of Defense’s Peer-Reviewed Cancer Research Programs (PRCRP). The house passed a budget of $100 million for PRCRP, which lists 12 cancers eligible for research funding, including lung cancer. Specifically, GO2 for Lung Cancer urges the adoption of the house funding as it includes an additional line item that funds lung cancer research with $14 million. (October)
GO2 for Lung Cancer joins other organizations in a letter to Senate leadership in support of the proposed $42.1 billion dollars in the Labor-HHS appropriations bill that would allow the NIH to expand its capacity to fund more promising research, provide support for the next generation of researchers, and allow the agency to identify and address other critical needs. While GO2 for Lung Cancer is grateful for the bipartisan funding support, GO2 for Lung Cancer is calling for Congress to avoid any further delay in finalizing the FY 2020 funding delays so that the NIH can stop operating under a continuing resolution, which leads to budget restraints and uncertainties. (October)
GO2 for Lung Cancer joins other organizations in a letter thanking Congressional leadership for passing H.R647, the Palliative Care and Hospice Education and Training Act (PCHETA). If passed by the Senate and signed by the President, the legislation would provide greater access to palliative care and services to millions of Americans, making a difference for Americans suffering from serious illnesses. (October)
GO2 for Lung Cancer joins others in a letter to Congressional leadership in support of PCORI reauthorization. Specifically, GO2 for Lung Cancer applauds Congress for its language on a 10 year reauthorization agreement, its efforts to continue the mandate to conduct comparative clinical effectiveness research (CER). (October)
GO2 for Lung Cancer joins other organizations in a letter expressing its comments to Congressional leadership on its initiative to reduce cap out-of-pocket (OOP) costs for Medicare Part D beneficiaries through the introduction of H.R 3, the Lower Drug Costs Now Act of 2019. While in support of reducing out-of-pocket costs for patients, GO2 for Lung Cancer’s feedback emphasizes that any policy initiatives but included protections against unintended consequences on the experience of Part D beneficiaries that could result from policy changes included in the legislation. (October)
GO2 for Lung Cancer sends a letter to U.S. House and Senate leadership urging Congress to fund the Peer Reviewed Lung Cancer Research Program within the Department of Defense, Congressionally Directed Medical Research Program (CDMRP). It is critical that Congress maintains funding for lung cancer research at 14 million dollars, in which funds many projects that have gone to clinical trials testing new therapies for lung cancer patients. To date, Congress has funded a total 141 million dollars for the lung cancer research program within CDMRP, making it the second largest lung cancer research program outside of the National Cancer Institute. (October)
GO2 for Lung Cancer joins other organizations in a letter urging CMS Administrator, Seema Verma, to not finalize the proposed rule as part of the laboratory date of service policy, in which could affect effective care for patients. GO2 for Lung Cancer believes that finalizing the “Changing the Test Results Requirement” would reinstate access barriers to timely testing that were eliminated with changes to the Date of Service Rule in 2018. If reinstated, GO2 for Lung Cancer worries that patients will face a 14-day waiting period, as reported occurred previously. Prior to the 2018 change, doctors intentionally held onto patient samples for 14 days before sending samples on to the laboratory for testing. (September)
GO2 for Lung Cancer joins a letter to express support to President Trump and HHS Secretary Azar for Dr. Ned Sharpless to be nominated and confirmed as the permanent commissioner of the U.S. Food and Drug Administration (FDA). GO2 for Lung Cancer believes that it is imperative FDA have a permanent leader as the agency regulates nearly 25 percent of the U.S. economy, including lifesaving therapies for lung cancer. (September)
GO2 for Lung Cancer and other members of the Patient Quality of Life Coalition are pleased to announce their support for and participation in the American Academy of Hospice and Palliative Medicine (AAHPM’s) upcoming 2020 State of the Science in Hospice and Palliative Care research symposium. The symposium will continue to encourage support for H.R. 647 and S. 2080, the Palliative Care and Hospice Education and Training Act (PCHETA). (August)
GO2 for Lung Cancer and other patient advocacy organizations send a letter to the United States Senate to express support for the Palliative Care and Hospice Education and Training Act (PCHETA). If passed. The legislation would relieve suffering and provide the best possible quality of life for patients and their families. Palliative care can be offered simultaneously with life-prolonging and curative therapies for persons living with serious, complex, and eventually terminal illness and includes hospice care. (July)
GO2 for Lung Cancer signs on to a letter sent to Senate Finance Committee leadership urging Congress to improve access to prescription medications in Medicare Part D and safeguard the health of Medicare beneficiaries, through changes to the Prescription Drug Pricing Reduction Act of 2019. (July)
GO2 for Lung Cancer joins others in a letter to Senate leadership in support of a policy proposal that would incentivize uptakes of biosimilars through a zero-dollar co-payment for beneficiaries enrolled in Medicare Part B. GO2 for Lung Cancer believes that biosimilars hold great promise to lower drug costs and increase patient access to medications, however a lack of uptake threatens the realization of this promise. (July)
GO2 for Lung Cancer acknowledges its full support for the use of palliative care for patients at all stages of their disease alongside active treatment. GO2 for Lung Cancer stands by the use of palliative care as a measure to achieve better outcomes and improved quality of life for lung cancer patients, survivors, and caregivers. (June)
GO2 for Lung Cancer joints other patient organizations in a letter to the Institute for Clinical and Economic Review providing feedback on ICER’s Value Assessment Framework. GO2 for Lung Cancer and other organizations do not believe that generating value assessments in a manner that leads to restricted access and discrimination is a necessary tactic or ethical strategy to lowering healthcare costs. The letter provides suggestions for ICER’s framework that aim to lower costs. (June)
GO2 for Lung Cancer joins others in a letter to the Office of Management and Budget in opposition of a proposed rule to adjust the official poverty measure (OPM) or poverty thresholds. If implemented, many would see increased barriers to health care, as fewer Americans would qualify for income assistance programs (June).
GO2 for Lung Cancer signed onto a letter urging CMS to extend the comment period for reconsideration of the National Coverage Determination on Next Generation Sequencing (NGS) for Medicare Beneficiaries with Advanced Cancer, pursuant to CAG-00450R. Currently, the public comment period is only 30 days, concluding on May 29, 2019. The impact CMS’ decision could have on access to NGS-based testing for Medicare beneficiaries and the future of genomic-based testing is of concern, and GO2 for Lung Cancer believes an extension will allow all stakeholders to thoroughly assess the reconsideration before providing detailed comments (May).
GO2 for Lung Cancer signed onto a letter urging CMS to revise the scope of the National Coverage Decision (NCD) so that it facilitates coverage of Next Generation Sequencing (NGS)-based hereditary/germline testing without influencing existing coverage policies related to the use of NGS-based tumor testing. It also identifies other aspects of the NCD that present additional opportunities for engagement with stakeholders. (May)
GO2 for Lung Cancer for Lung Cancer, formerly Lung Cancer Alliance, sends letters to the House and Senate with other patient focused organizations expressing its support for the reauthroization of the Patient-Centered Outcomes Research Institute (PCORI). The Institute has the unique advantage to produce healthcare solutions that are both evidence-based and patient-centered which will improve care while addressing spending. PCORI is the only organization funding comparative clinical effectiveness research (CER) studies that compares varying treatment approaches and for which patients. GO2 for Lung Cancer believes PCORI will meet today’s challenges to examine quality of care and costs with continued work on its research. (May)
GO2 for Lung Cancer for Lung Cancer, formerly Lung Cancer Alliance, sends a letter to Congressional leadership urging Congress to convene public forums with stakeholders and the Federal Drug Administration (FDA) to discuss ways to revise and develop the Verifying Accurate, Leading-Edge in Vitro CLinical Test Development (VALID) Act, in which will best improve the quality of care to patients while fostering greater innovation in the diagnostic testing community. (May)
GO2 for Lung Cancer for Lung Cancer, formerly Lung Cancer Alliance, and other members of the Friends of Cancer Research Coalition voice opposition to a memorandum from the White House titled, “Guidance on Compliance with the Congressional Review Act” that would alter the guiding process for federal agencies and could harm the health and safety of the public if applied to the Federal Drug Administration (FDA). (April)
Lung Cancer Alliance and other members of the NHLBI Constituency Group sent a letter to Congress urging them to include $41.6 billion for the National Institutes of Health (NIH), including $3.71 billion for the National Heart, Lung, and Blood Institute (NHLBI) in the FY 2020 Labor-HHS-Education Appropriation bill. Lung Cancer Alliance believes a funding level of this amount would allow the NIH to sustain current activities and invest in promising and critically needed scientific research. (March)
Lung Cancer Alliance sends a letter along with other members of the CDC Coalition to Congress urging Congress to provide at least $7.8 billion for the Centers for Disease Control and Prevention Programs the FY20 Labor, Health and Human Services, and Education Appropriations bill. Lung Cancer Alliance believes that this funding is crucial for all of the activities and programs supported by CDC which are essential to protect the health of all Americans. (March)
Lung Cancer Alliance joins other patient advocacy organizations in a joint letter to the Chairman of the Senate Committee on Heath, Education, Labor and Pensions (HELP), Senator Lamar Alexander providing input on ways to address rising health care costs in the U.S. During an opportunity to provide comments to the U.S. Senate HELP Committee, Lung Cancer Alliance addressed its supports and asks for the committee to consider policies that expand access to palliative care services. (March)
Lung Cancer Alliance sends letter to Congress endorsing HR 913, the Clinical Treatment Act, which would ensure states cover routine care costs of participation in an approved clinical trial for Medicaid beneficiaries with life-threatening conditions. Routine costs include the non-experimental costs of treating a patient participating in a clinical trial. They are standard costs that will be incurred no matter what, and thus has little impact on the overall cost of Medicaid programs and will help patients gain access to critical clinical trials. (February)
Lung Cancer Alliance joins other cancer advocacy organizations by sending a letter to Secretary Azar urging the Center for Medicaid & Medicare Services to not consider or finalize the proposed changes the Medicare Part D six protected classes. Since the initial implementation to the six protected classes, six categories of drugs were identified and required to be covered under Part D plans to ensure all beneficiaries have access to medications needed to treat their conditions. The current proposed changes could lead to barrier to access of necessary drugs and maintain current treatments. (February)
LCA among others have sent a letter to the Center for Medicaid & Medicare Services expressing concerns over recent developments regarding the implementation of the National Coverage Determination (NCD) for Next Generation Sequencing (NGS) for Medicare beneficiaries with advanced cancer. Lung Cancer Alliance believes these developments will restrict patient access to medically necessary and relevant testing of germline mutations in cancer patients as well as impact patient care and outcomes. (February)
LCA and other public interest groups representing cancer researchers, physicians and nurses, patients, survivors and their families join together to express urgency to Congress to work together raise the FY 2020 budget cap. If Congress does not take action, the non-defense discretionary budget cap for FY 2020 will drop by $55 bullion below the FY 2019 level. This change will drastically impact the National Institutes of Health, including the National Cancer Institute, and the Centers for Disease Control and Prevention (CDC) Cancer Prevention and Control Programs. (February)
LCA makes a statement endorsing the Cancer Drug Parity Act of 2019 which will play a role in modernizing insurance benefit designs so that patient out-of-pocket expenses for oral drugs can avoid arbitrary insurance designs that deny patients optimal therapy for their conditions. With the passage of federal legislation, patients can take medication by pill at similar out-of-pocket costs as medications administered in a doctors office. LCA believes this is a crucial step in providing affordable access to care for all cancer patients. (January)
LCA makes a statement in support of the Burn Pits Accountability Act of 2019 which ensures that those effected by burn pit toxins are accounted for and benefit from actions designated to address its associated health issues. LCA also recommends additional research examining the consequences of burn pit exposure and identifying effective tools to treat veterans who have been exposed early that improves health and saves lives. (January)
LCA and other health advocacy organizations send a letter Congressional leaders expressing concern over the impact the partial federal shutdown is having on the operations of the Food and Drug Administration (FDA). As a catalyst for expediting lifesaving therapies to patients, without full funding for the FDA, a continued shutdown puts health and safety of Americans at risk and puts future scientific discovery and innovation in jeopardy. LCA asks that Congress immediately brings back the FDA’s budget to its full capacity. (January)
2018
LCA joins the Friends of Cancer Research Coalition urging the Senate to pass S.3519, the Making Objective Drug Evidence Revisions for New Labeling Act (MODERN Labeling Act). Studies reveal that many prescription drug labels are out of date and if passed, this legislation would require the FDA to update generic drug labels to reflect new scientific information relevant to the drug and its use. This bill will address discrepancies that occur when new scientific information relevant to a drug’s indication is not incorporated into its label and ensure all Americans are provided with appropriate and safe drugs (November)
LCA joins the Research!America community in a letter and the One Voice Against Cancer (OVAC) community in a letter expressing gratitude for Congress’s bipartisan successful efforts to secure an additional $2 billion in funding for the National Institutes of Health, as well as crucial advancements for other important Department of Health and Human Services agencies such as the Centers for Disease Control and Prevention (CDC) and the Agency for Healthcare Research and Quality (AHRQ) as part of H.R. 6157, the Fiscal Year 2019 Labor, Health and Human Services, Education/Defense Appropriations Conference Report. The successful passage of H.R. 6157 will further insure continued cancer research and cancer control programs. (October)
LCA submits comments to the Center for Medicaid and Medicare Services (CMS) expressing its concerns with the Alabama Medicaid Workforce Initiative 1115 Waiver that would impose work requirements on a population of beneficiaries that already have one of the nation’s strictest income eligibility requirements. This waiver disregards the multitude of reasons that limits one’s ability to comply with additional requirements, puts individuals in a ‘Catch-22’ scenario, and will result in a loss of coverage. In order for lung cancer patients covered by Medicaid in Alabama to maintain access to necessary care and treatment, LCA believes these work requirements should not be considered. (October)
LCA and American Lung Cancer Foundation (ALCF) write joint comments to the FDA applauding its initiative to utilize real-world data from patient-driven platforms and developing a patient centered committee to consider emerging e-platforms for better patient and consumer engagement. With careful and thoughtful implementation, real-world data and leveraging e-platforms can help fill gaps in an evolving and advancing health information field to inform and move new technologies and medical devices forward in a safe and effective way. With additional recommendations to reduce burdens, the two organizations support the use of real-world data and strongly believe it will make substantial improvements to patient care and management. (October)
LCA joins the Part B Access for Seniors and Physicians (ASP) Coalition and sent a letter to Senate and House leaders asking them to urge the Centers for Medicare & Medicaid Services (CMS) to reconsider a proposal to allow Medicare Advantage (MA) plans to implement step therapy to manage Part B drugs. LCA is concerned that if implemented, doctors could be required to prescribe patients with less effective therapies and drugs ultimately restricting access and decrease therapy choices putting patients’ health at risk and potentially create long-term health care issues. (September)
LCA joins others representing patients, people with disabilities, physicians, and caregivers in a letter urging the President and CEO of CVS to reverse its decision allowing CVS Caremark to deny coverage of drugs that fail to meet a cost-effectiveness threshold. LCA among the others firmly believes that a cost-effectiveness analysis discriminates against the chronically ill, elderly, and people with disabilities as it will deny coverage of drugs for patients if the drugs do not meet a subjective ‘quality-adjusted-life-year’ based threshold. (September)
LCA submits comments to the Center for Medicaid and Medicare Services (CMS) expressing its concerns with the Kentucky HEALTH Medicaid program waiver that would impose work requirements, additional paperwork, lockout periods, and the removal of non-emergency medical transportation coverage; impacting patients’ access to necessary services who are covered by Medicaid in Kentucky. (August)
LCA and the Bonnie J. Addario Lung Cancer Foundation (ALCF) provide comments on the Oregon Health Evidence Review Omission’s (HERC) draft Coverage Guidance Document in which LCA and ALCF express support for the positive clinical utility of Next Generation Sequencing (NGS) testing and its impact on clinical outcomes and decision making. (August)
LCA recently joined 50 leading organizations representing patients and people with disabilities in submitting a letter to the Centers for Medicare and Medicaid Innovation (CMMI) urging the agency to act on their statute’s call for alternative payment models to be evaluated based on patient-centered criteria. (August)
LCA joins others in a letter as a member of the Regulatory Education and Action for Patients (REAP) Coalition, a letter as part of the Patient Advocacy Network, and a letter as a member of the Cancer Support Community that was sent to Health and Human Services Secretary, Alex Azar, in which provides feedback on policies under consideration in the HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket costs. (July)
LCA joins the Patient Quality of Life Coalition (PQLC) in a letter to Congress supporting legislative efforts to reduce inappropriate use of opioids and providing rehabilitative assistance for those who have abused, but also urges Congress that any public policy initiative being considered must not create any barriers to accessing pain management and symptom relief for patients suffering from cancer. (June)
LCA joins others in requesting that Congress (House and Senate) allocate at least $216.5 million for the Centers for Disease Control and Prevention’s (CDC) Office on Smoking and Health (OSH), in which supports critical efforts for tobacco free initiatives. LCA opposes any congressional efforts to eliminate the OSH. (June)
LCA joined Society of Thoracic Surgeons (STS) and American College of Radiology (ACR) in a letter to the United States Preventive Services Task Force (USPSTF), an independent body established by the government to evaluate preventive services, in an effort to shape the next round of USPSTF review for lung cancer screening. The coalition letter encourages USPSTF to evaluate screening from objective information reflecting current studies and real world implementation experience for the benefit of those at high risk. (May)
LCA and other stakeholders sent a joint letter urging the Department of Health and Human Services to ensure Medicare beneficiaries have coverage for lung cancer screening in all eligible sites; which includes Independent Diagnostic Testing Facilities (IDTFs). (May)
LCA joins with others urging the House and Senate to approve the authorized level of funding in the FY19 Budget for the Center for Tobacco Products in order for the FDA to continue its oversight of the manufacturing, distribution, and marketing of tobacco products that will improve U.S. public health. (May)
LCA joins other advocates and industry stakeholders urging Congress to enact legislation to modernize the oversight of clinical laboratory tests, which will increase patient access to innovative drugs while ensuring adequate safety. (May)
LCA and 153 other members of the CDC Coalition sent a letter to the Chairs of the Senate and House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies urging Congress to provide $8.445 billion for the Centers for Disease Control and Prevention’s programs in the FY 19 Labor, Health and Human Services, Education and Related Agencies Appropriations bill. This bill will continue to fund all of the activities and programs supported by CDC and are essential to protect the health of the American people. (April)
LCA joins cancer groups in a letter encouraging Congress to review other policy options that improve the ability of patients to quickly and safely access both approved and unapproved innovative, lifesaving therapies. (February)
2017
LCA signed on with ACS CAN’s Patient Quality of Life Coalition (PQLC) to offer comments regarding questions relevant to the Food and Drug Administration’s (FDA’s) new Opioid Policy Steering Committee. (December)
LCA signed onto a letter that was sent to HHS Acting Secretary Eric Hargan regarding the media reports of restrictions on the use of certain language in CDC’s FY 2019 budget documents. (December)
Following the Senate’s passage of the tax bill, LCA, the National Organization for Rare Diseases and 162 other advocacy organizations signed onto a letter requesting that Congress preserve the Orphan Drug Tax Credit within the Tax Cuts and Jobs Act Conference Report. The Senate’s version proposes to cut the credit’s value from 50 percent of qualified clinical testing expenses, to 27.5 percent. The House version repeals the credit entirely. (December)
LCA joined the CDC Coalition in letters to the House and Senate Appropriations Committee and Labor-HHS-Ed Appropriations Subcommittee leaders requesting at least $7.8 billion for CDC’s programs in any final FY 2018 funding bill and a restoration of the cuts that were made to several CDC programs in the House and Senate Appropriations Committee-passed bills from earlier this year. (December)
LCA signed onto a letter with One Voice Against Cancer (OVAC) encouraging Congress to reach a bipartisan agreement to lift the budget caps in order to provide the NIH and CDC with greater resources to pursue life-saving advances in cancer research, early detection and prevention. (November)
LCA comments to CMS on CMMI’s new direction to promote patient-centered care and test market-driven reforms that empower beneficiaries as consumers, provide price transparency, increase choices and competition to drive quality, reduce costs, and improve outcomes. (November)
Statement by LCA and 90 other patient organizations in opposition to the House of Representative’s Repeal of the Orphan Drug tax credit. Statement by LCA and 36 patient organizations in opposition to the Senate’s proposed weakening of the Orphan Drug Tax Credit.
LCA sent LCA’s Letter to Anthem Blue Shield & Blue Cross urging them to reconsider its recent policy change in at least nine states to deny coverage of Computed Tomography (CT) and Magnetic Resonance Imaging (MRI) services performed in hospital outpatient departments, which will affect the lung cancer at-risk community. (October)
LCA signed on to DHRC Letter to Thornberry_Policy Letter and its importance to the readiness of the U.S. Armed Services. (October)
LCA joined Friends of Cancer, ACSCAN and NORD in a letter addressing concerns for legislation, S.204, and H.R.878. Together we encourage leaders of the House Committee of Energy and Commerce to consider policy options that help cancer patients access unapproved treatment and therapies safely. (September)
LCA and 13 other patient organizations joined forces to comment in response to the “Laboratory Date of Service Policy” (DOS) in the Centers for Medicare & Medicaid Services (CMS) Hospital Outpatient Prospective Payment System (HOPPS) Proposed Rule for Calendar Year 2018, encouraging the elimination of unnecessary barriers that prevent patients from receiving the best care. (September)
LCA joined other patient advocacy organizations in a letter House and Senate Appropriations leaders to ensure transfer authority between the NCI and the FDA for Moonshot Initiative efforts. (July)
As a founding member of the Deadliest Cancers Coalition, LCA joins a letter to express our concern about the “Better Care Reconciliation Act,” the Senate version of the health bill released on June 22. (June)
LCA sends letter to Majority Leader McConnell and Minority Leader Schumer voicing concerns about the “Better Care Reconciliation Act of 2017” and how it will impact the lung cancer community. (June)
LCA joins Trust for America’s Health by signing on a letter to the Senate opposing the repeal of the Prevention and Public Health Fund within the CDC, Proposed in the Senate’s Better Care Reconciliation Act (H.R. 1628) at the start of FY18. (June)
LCA signs onto letter urging Congress to maintain Medicaid expansion. (June)
Letter urging the HHS to protect patient access and oppose harmful recommendations to Medicare Part B. (June)
LCA supports H.R. 1662, which would make facilities of the Veterans Health Administration (VHA) smoke-free. (May)
Centers for Disease Control and Prevention Coalition requests 7.8 billion in FY18 Appropriations for CDC’s Public Health Programs. (April)
Deadliest Cancer Coalition letter rejecting proposed $5.8 billion cut to NIH/NCI in FY2018 President’s Skinny Budget. (March)
Letter requesting funding in FY18 for the US Environmental Protection Agency (EPA) to fight radon, the second leading cause of lung cancer. (March)
Letter to Administrator Pruitt requesting specific funding in EPA’s FY18 budget to support the Radon Program and the State Indoor Radon Grant (SIRG) Program. (March)
Joint letter with One Voice Against Cancer Coalition to oppose budget cuts and advocate increase for the NIH funding. (March)
Congressional Lung Cancer Caucus officially re-established (March)
Joint letter with American Association of Radon Scientists and Technologists against cuts to EPA radon programs (March)
Partnership for safe medicines letter to Congress on counterfeit medicines (February)
Deadliest Cancers Coalition supporting NIH funding (February)
Joint letter urging Congress to work together to complete the fiscal year 2017 appropriations process and secure funding for lung cancer within the CDMRP fiscal year 2017 Defense Appropriations Act. (February)
Joint letter with ACS-CAN to Senate and House addressing possible loss of key protections to access to affordable insurance coverage for patients with preexisting health conditions. (February)
OpEd: Putting Patients First (February)
Joint letter with American Lung Association and 18 lung cancer groups on Affordable Care Act (February)
One Voice Against Cancer support letter for 21st Century Cures (January)
Joint letter with ACS-CAN and 31 other national organizations requesting action on LDT oversight (January)
2016
Coalition letter to CMS with comments on new reimbursements for screening (December)
Letter to United States Preventive Services Task Force on tobacco cessation (December)
One Voice Against Cancer Support Letter for 21st Century Cures (November)
Deadliest Cancer Coalition Supporting Moonshot Funding for 2017 (November)
Congressionally Directed Medical Research Program in DOD Support for FY17 (November)
CDC Coalition letter supporting FY17 funding (October)
Coalition Letter to CMS against reimbursement reductions for screening (September)
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