Summary: In 2024, we achieved policy wins on multiple fronts. We made progress with CMS through the launch of important demonstrations and contributed to their final rulemaking. Within Medicaid, several states expanded care services for serious illness through waivers or state amendments with CMS. Amid a gridlocked Congress, we reached out to policymakers with a bipartisan message, backed by evidence, that improving care for those with serious illness improves care quality as well as reduces costs. Moving forward into 2025, we are confident our cause will remain bipartisan and we can build on accomplishments with the first Trump Administration such as the ACO REACH High Needs Track and the Kidney Care Choices demonstrations.
Your Voice Heard in Medicare Policies and Quality Measures. Every new regulation gives us an opportunity to make a difference—and last year, we ensured the voices of patients and caregivers were heard. We responded to Requests for Information (RFIs) and submitted regulatory comments that shaped key policies before they became final. Our advocacy has real impact. Our policy maker friends remind us the comments are critical in rule making. Several of our recommendations influenced and even directly quoted final federal rules, shaping care models for those with serious illness:
| Regulatory Area | C-TAC Recommendation Adopted |
| Home Health | We recommended assessing family caregiver stress, measuring advance care planning, ensuring access to palliative care services, and timely referrals to hospice. |
| Hospice | We advised CMS to avoid using “comfort care” interchangeably with “palliative care” and to clearly distinguish between “hospice care” and “palliative care.” |
| Skilled Nursing Facility | We proposed assessing caregiver stress, measuring advance care planning, improving access to palliative care services, referring to hospice in a timely manner, and using CDC Clinical Practice Guidelinefor Prescribing Opioids for Pain, for a proposed pain management measure. |
| Hospital Inpatient | We recommended assessing family caregiver burden and ensuring referrals lead to service delivery, adding measures for advance care planning, palliative care access, and timely and appropriate hospice referrals. |
| Appeal rights for certain changes in status |
We recommended using “provider-neutral language” instead of “physician.” They adopted our suggestion to use “physician or other qualified practitioner” in several instances to align with regulatory provisions and will use this terminology going forward. |
| Medicare Physician Fee Schedule |
We proposed new coding and payment for caregiver training in direct care and behavior management services, enabling reimbursement for caregivers providing critical supports to individuals with serious illness. |
New Demonstrations Launched
Since 2010, we’ve partnered with the Innovations Center at CMS to promote patient-centered, comprehensive care for individuals with serious illness and support for their caregivers. We saw significant progress across the Obama, Trump, and Biden Administrations, with advances such as adopting advance care planning across models, providing palliative care alongside disease-modifying treatments, and introducing new flexibilities for addressing patients’ and caregivers’ needs. In 2024, the Innovations Center launched:
- GUIDE– an 8 year national program with over 400 participants to improve care for people with dementia and – setting a significant precedent – their family caregivers. This model also pioneers cost savings across both Medicare and Medicaid programs.
- It was also encouraging to see CMMI collect Caregiver data and offer training and support to caregivers as critical parts of the model.
- AHEAD – an 11-year program for states to address healthcare cost growth and improve population health. States must also develop a population health strategy and standardized way for tracking social determinants of health and chronic conditions through the Consumer Assessment of Healthcare Providers and Systems (CAHPS). This directly impacts how states and health systems identify and deliver care to vulnerable populations, including those with serious illness.
- ACO Primary Care Flex Model – aims to expand participation in ACOs and the Shared Savings Program, increasing the number of Medicare beneficiaries in accountable care relationships. This will most benefit people in rural communities, where value-based care adoption has been slow because of low healthcare volume, leaving those with serious illness without adequate resources to address their needs holistically.
In the Medicare MSSP ACO program, we saw new requirements for palliative care consultations for seriously ill populations. Supporting our work spreading new care models, new research from health plans and ACOS highlighted the value of palliative care. We look forward to collaborating with the Trump Administration and Congress to build on these opportunities and advance our core principles for serious illness care.
Federal Legislation
We worked with our federal Congressional champions to:
- Redraft the Improving Access to Advance Care Planning Act (S.4873/H.R.8840) to address CMS’s technical concerns.
- Contribute to and support the Hospice Care Accountability, Reform, and Enforcement (Hospice CARE) Act(H.R.9803).
- Advocate for extending the hospice recertification and advance care planning telehealth provisions, including audio-only planning.
- Convene a pediatric palliative care workgroup at the Summit to address coverage gaps and explore future legislation.
- Contribute to and support the Expanding Access to Palliative Care Act (S.1845), Provider Training in Palliative Care Act (S.2117), Compassionate Care Act (S.4949), and Palliative Care and Hospice Education and Training Act(S.2243).
State Advocacy Progress
By leveraging state amendments and waivers, states developed new services for serious illness care and set important national policy precedents with CMS, easing adoption for other states.
- Ohio included Area Agencies on Aging in state dual alignment initiatives for home and community services.
- The Center for Medicaid and CHIP Services (CMCS) classified palliative care as a preventive service, enabling palliative care to shift from end-of-life care to earlier stages.
- States advanced palliative care reimbursement codes, including for comprehensive palliative care assessments.
- States expanded access to pediatric palliative care services through waivers.
To cap the year, we held the 2024 National Leadership Summit, assessed progress, and identified emerging trends. We incorporated feedback from the Coalition to shape our First 100 Days Policy Agenda, which we recently shared with the Trump Administration. We also announced new partnerships: with the Sheri and Les Biller Foundation’s new advocacy coalition– Together for Supportive Cancer Care—and with the Elea Institute to integrate and support family caregivers in promising care models.
Interested in joining C-TAC’s advocacy and help “move mountains” in Washington DC for those with serious illness? Please get in touch info@thectac.org.
