Joint Statement on the Impact of Medicaid Community Engagement Requirements and Cancer Care FOR IMMEDIATE RELEASEMedia Contact:Eric MillerVP, CommunicationsZERO Prostate Cancereric.miller@zerocancer.org | media@zerocancer.org The Cancer Support Community (and 11 local Gilda’s Clubs and CSCs), CancerCare, Cancer Nation, Caring Ambassadors Program, Fight Colorectal Cancer, GO2 for Lung Cancer, LUNGevity Foundation, Susan G. Komen, Ovarian Cancer Research Alliance (OCRA), and ZERO Prostate Cancer stand united in strongly opposing aspects of the Centers for Medicare and Medicaid Services (CMS) interim final rule (IFR) that create unnecessary documentation, verification, or administrative barriers for medically frail individuals and those with serious or complex medical conditions.Medical exemptions may be more difficult to obtain than many stakeholders initially anticipated. While H.R. 1 exempts certain medically frail individuals and those with serious medical needs, the IFR establishes detailed verification and documentation requirements that could require beneficiaries to provide additional evidence beyond a diagnosis alone. Questions remain regarding how states will operationalize these requirements, including what documentation will be required and how medical frailty determinations will be made. If implemented in a burdensome manner, these requirements could place medically vulnerable individuals at risk of losing coverage because of administrative barriers rather than true ineligibility.For people managing serious illness, disability, or functional impairment, this distinction is not procedural—it is consequential. Cancer patients face unique vulnerability to work requirements because of treatment-related disability. Cancer and its treatment frequently cause functional limitations that may be temporary, episodic, or permanent, making it difficult to meet continuous work or reporting requirements even when exemptions theoretically exist. Real-world patient data reinforce Medicaid’s importance as a lifeline for cancer patients’ survivorship. For 1,167 respondents to Cancer Support Community’s Cancer Experience Registry, those cancer patients who were unemployed due to disability were nearly three times more likely to rely on Medicaid than other respondents (19% vs. 7%), while more than half reported serious limitations in physical functioning.Evidence from Arkansas' Medicaid work requirement demonstration underscores why implementation matters. The policy produced little measurable increase in employment. Yet research found that approximately 95% of individuals who lost coverage in that state were either still eligible for Medicaid or qualified for an exemption, indicating that coverage losses were driven largely by reporting, verification, and administrative barriers rather than true ineligibility. Implementing and administering these requirements can also divert significant state and healthcare system resources toward eligibility verification, reporting, and compliance activities rather than direct patient care.For patients undergoing cancer treatment or recovery, these administrative demands may create additional obstacles to maintaining coverage even when statutory protections are available.Rural residents face greater difficulty complying with Medicaid reporting requirements due to fewer job opportunities, transportation challenges that can limit participation in job training and access to public services, including Medicaid enrollment and administrative support. They are also significantly more likely than urban residents to lack reliable broadband access (22% vs. 2%), complicating compliance with online reporting and documentation requirements. Yet we know that Medicaid expansion has improved 5-year cancer survival rates, especially among rural and historically underserved populations. Policies that create coverage losses through reporting barriers risk reversing this progress and may lead to delayed care, later-stage diagnoses, and higher mortality.Limiting the use of self-attestation could compound these harms by reducing an important safeguard that helps eligible individuals retain coverage despite verification delays, paperwork burdens, and other administrative barriers.This issue is not about work. It is about whether people living with cancer can maintain healthcare coverage while coping with symptoms such as pain and fatigue, treatment demands, caregiving responsibilities, and barriers to accessing care. The primary concern is that complex reporting, verification, and documentation requirements may create administrative barriers that place otherwise eligible individuals at risk of losing coverage.These burdens do not stop with the patient. Providers are already facing significant administrative demands and burnout from meeting insurance documentation requirements. If maintaining an exemption depends on obtaining timely documentation, what happens when a patient is in active treatment or a provider is unable to respond to a time-sensitive request?CMS must preserve broad medical frailty protections, maximize the use of self-attestation and existing data sources whenever possible, and ensure that documentation requirements do not create unnecessary barriers for individuals with serious medical conditions. If additional verification is required, states should rely on streamlined processes that minimize administrative burden and prevent patients from having to repeatedly document their diagnosis in order to maintain coverage. Implementation should also be as consistent as possible across states to reduce confusion for patients and providers, particularly those who receive care across state lines. Without clear and streamlined approaches to medical frailty determinations and verification, patients may be forced to navigate a patchwork of state-specific processes while managing serious illness.Patients battling cancer should not have to navigate burdensome documentation requirements to maintain coverage, nor should they lose coverage because they are unable to comply with complex administrative processes during treatment and recovery.Patients impacted by cancer need stable access to care, not new administrative hurdles that jeopardize Medicaid coverage when they are most vulnerable. CMS and state leaders must act now to ensure that Medicaid policies protect access to care for people with cancer by preserving meaningful medical frailty protections, minimizing unnecessary documentation and verification burdens, and preventing avoidable coverage losses among eligible patients.For more information contact: Deborah Walter (dwalter@cancersupportcommunity.org)Organizations:Cancer Support Community ArizonaCancer Support Community Central WashingtonCancer Support Community DelawareCancer Support Community New JerseyCancer Support Community San Francisco Bay AreaCancer Support Community South BayCancer Support Community Valley/Ventura/Santa BarbaraGilda’s Club ChicagoGilda’s Club KentuckianaGilda’s Club South FloridaIndian Family Health Clinic About ZERO Prostate CancerZERO Prostate Cancer (ZERO) is on a mission to improve and save lives from prostate cancer through advocacy, education, awareness, and support. Formerly known as the National Prostate Cancer Coalition, ZERO was founded in 1996 to stand up for people impacted by prostate cancer. Today, ZERO serves as the nation's leading prostate cancer organization, advancing a future where prostate cancer detection is early, support is unwavering, and care is accessible to all. For over 30 years, ZERO has led the way in prostate cancer advocacy, screenings, and partnerships, successfully unlocking funding toward breakthrough discoveries, treatments, and lifesaving access to care. As the nation’s #1 provider of prostate cancer resources, programs, and services, ZERO has supported millions of people at-risk or diagnosed, and their families. As the voice of the prostate cancer community, ZERO's urgent focus on breaking barriers to survival—by closing gaps in diagnosis, treatment, and care—brings critical attention to those most likely to be impacted by this disease. Learn more at ZEROcancer.org More for Press & Media Press Releases Press Releases Explore our newsroom for press releases and official statements about ZERO's latest updates, achievements, and partnerships. Press & Media Inquiries Press & Media Inquiries See how to contact ZERO's media contacts for press inquiries, logo and brand guidelines, and our recent press releases. Media Kits Media Kits Find essential tools to enhance your storytelling and coverage about ZERO. Press Release
FOR IMMEDIATE RELEASEMedia Contact:Eric MillerVP, CommunicationsZERO Prostate Cancereric.miller@zerocancer.org | media@zerocancer.org
The Cancer Support Community (and 11 local Gilda’s Clubs and CSCs), CancerCare, Cancer Nation, Caring Ambassadors Program, Fight Colorectal Cancer, GO2 for Lung Cancer, LUNGevity Foundation, Susan G. Komen, Ovarian Cancer Research Alliance (OCRA), and ZERO Prostate Cancer stand united in strongly opposing aspects of the Centers for Medicare and Medicaid Services (CMS) interim final rule (IFR) that create unnecessary documentation, verification, or administrative barriers for medically frail individuals and those with serious or complex medical conditions.Medical exemptions may be more difficult to obtain than many stakeholders initially anticipated. While H.R. 1 exempts certain medically frail individuals and those with serious medical needs, the IFR establishes detailed verification and documentation requirements that could require beneficiaries to provide additional evidence beyond a diagnosis alone. Questions remain regarding how states will operationalize these requirements, including what documentation will be required and how medical frailty determinations will be made. If implemented in a burdensome manner, these requirements could place medically vulnerable individuals at risk of losing coverage because of administrative barriers rather than true ineligibility.For people managing serious illness, disability, or functional impairment, this distinction is not procedural—it is consequential. Cancer patients face unique vulnerability to work requirements because of treatment-related disability. Cancer and its treatment frequently cause functional limitations that may be temporary, episodic, or permanent, making it difficult to meet continuous work or reporting requirements even when exemptions theoretically exist. Real-world patient data reinforce Medicaid’s importance as a lifeline for cancer patients’ survivorship. For 1,167 respondents to Cancer Support Community’s Cancer Experience Registry, those cancer patients who were unemployed due to disability were nearly three times more likely to rely on Medicaid than other respondents (19% vs. 7%), while more than half reported serious limitations in physical functioning.Evidence from Arkansas' Medicaid work requirement demonstration underscores why implementation matters. The policy produced little measurable increase in employment. Yet research found that approximately 95% of individuals who lost coverage in that state were either still eligible for Medicaid or qualified for an exemption, indicating that coverage losses were driven largely by reporting, verification, and administrative barriers rather than true ineligibility. Implementing and administering these requirements can also divert significant state and healthcare system resources toward eligibility verification, reporting, and compliance activities rather than direct patient care.For patients undergoing cancer treatment or recovery, these administrative demands may create additional obstacles to maintaining coverage even when statutory protections are available.Rural residents face greater difficulty complying with Medicaid reporting requirements due to fewer job opportunities, transportation challenges that can limit participation in job training and access to public services, including Medicaid enrollment and administrative support. They are also significantly more likely than urban residents to lack reliable broadband access (22% vs. 2%), complicating compliance with online reporting and documentation requirements. Yet we know that Medicaid expansion has improved 5-year cancer survival rates, especially among rural and historically underserved populations. Policies that create coverage losses through reporting barriers risk reversing this progress and may lead to delayed care, later-stage diagnoses, and higher mortality.Limiting the use of self-attestation could compound these harms by reducing an important safeguard that helps eligible individuals retain coverage despite verification delays, paperwork burdens, and other administrative barriers.This issue is not about work. It is about whether people living with cancer can maintain healthcare coverage while coping with symptoms such as pain and fatigue, treatment demands, caregiving responsibilities, and barriers to accessing care. The primary concern is that complex reporting, verification, and documentation requirements may create administrative barriers that place otherwise eligible individuals at risk of losing coverage.These burdens do not stop with the patient. Providers are already facing significant administrative demands and burnout from meeting insurance documentation requirements. If maintaining an exemption depends on obtaining timely documentation, what happens when a patient is in active treatment or a provider is unable to respond to a time-sensitive request?CMS must preserve broad medical frailty protections, maximize the use of self-attestation and existing data sources whenever possible, and ensure that documentation requirements do not create unnecessary barriers for individuals with serious medical conditions. If additional verification is required, states should rely on streamlined processes that minimize administrative burden and prevent patients from having to repeatedly document their diagnosis in order to maintain coverage. Implementation should also be as consistent as possible across states to reduce confusion for patients and providers, particularly those who receive care across state lines. Without clear and streamlined approaches to medical frailty determinations and verification, patients may be forced to navigate a patchwork of state-specific processes while managing serious illness.Patients battling cancer should not have to navigate burdensome documentation requirements to maintain coverage, nor should they lose coverage because they are unable to comply with complex administrative processes during treatment and recovery.Patients impacted by cancer need stable access to care, not new administrative hurdles that jeopardize Medicaid coverage when they are most vulnerable. CMS and state leaders must act now to ensure that Medicaid policies protect access to care for people with cancer by preserving meaningful medical frailty protections, minimizing unnecessary documentation and verification burdens, and preventing avoidable coverage losses among eligible patients.For more information contact: Deborah Walter (dwalter@cancersupportcommunity.org)Organizations:Cancer Support Community ArizonaCancer Support Community Central WashingtonCancer Support Community DelawareCancer Support Community New JerseyCancer Support Community San Francisco Bay AreaCancer Support Community South BayCancer Support Community Valley/Ventura/Santa BarbaraGilda’s Club ChicagoGilda’s Club KentuckianaGilda’s Club South FloridaIndian Family Health Clinic
About ZERO Prostate CancerZERO Prostate Cancer (ZERO) is on a mission to improve and save lives from prostate cancer through advocacy, education, awareness, and support. Formerly known as the National Prostate Cancer Coalition, ZERO was founded in 1996 to stand up for people impacted by prostate cancer. Today, ZERO serves as the nation's leading prostate cancer organization, advancing a future where prostate cancer detection is early, support is unwavering, and care is accessible to all. For over 30 years, ZERO has led the way in prostate cancer advocacy, screenings, and partnerships, successfully unlocking funding toward breakthrough discoveries, treatments, and lifesaving access to care. As the nation’s #1 provider of prostate cancer resources, programs, and services, ZERO has supported millions of people at-risk or diagnosed, and their families. As the voice of the prostate cancer community, ZERO's urgent focus on breaking barriers to survival—by closing gaps in diagnosis, treatment, and care—brings critical attention to those most likely to be impacted by this disease. Learn more at ZEROcancer.org
More for Press & Media Press Releases Press Releases Explore our newsroom for press releases and official statements about ZERO's latest updates, achievements, and partnerships. Press & Media Inquiries Press & Media Inquiries See how to contact ZERO's media contacts for press inquiries, logo and brand guidelines, and our recent press releases. Media Kits Media Kits Find essential tools to enhance your storytelling and coverage about ZERO.
