Advocacy letters, blogs and OpEds we have written or signed on to on various issues:

2019

GO2 Foundation 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 Foundation 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 Foundation 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 Foundation 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 Foundation 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 Foundation 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 Foundation 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 Foundation acknowledges its full support for the use of palliative care for patients at all stages of their disease alongside active treatment. GO2 Foundation 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 Foundation joints other patient organizations in a letter to the Institute for Clinical and Economic Review providing feedback on ICER’s Value Assessment Framework. GO2 Foundation 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 Foundation 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.

GO2 Foundation 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 Foundation  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 Foundation believes PCORI will meet today’s challenges to examine quality of care and costs with continued work on its research. (May)

GO2 Foundation  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 Foundation  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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