C-TAC’s 2023 Annual Policy Impact Report

Nothing gets done in Washington, right? Well…in a year when Congress had the fewest bills passed, ever, and polarization seemed at its highest, it was a breakthrough year for C-TAC’s policy advocacy. The public policy wins in this recap of 2023 will have an immediate impact for patients, caregivers, and their care teams in 2024. We couldn’t have done it without your support and the hundreds of others in the Coalition advocating together around our shared vision.

C-TAC’s Accomplishments Highlighted

• New, Funded Services: In 2024, Medicare will start paying for care navigation, caregiver training, and social supports through the Physician Fee Schedule. These new payments will also support community health workers and navigators. These resources come from the local community who best understand the issues and services for people living there. As such, they can help improve health equity and access to care.
• Precedent-Setting Recognition of the Caregiver: Purva Rawal, chief strategy officer at the Center for Medicare and Medicaid Innovation (CMMI), spoke at the 2023 C-TAC-CAPC Summit about the critical support of the Coalition in launching the Innovation Center’s GUIDE demonstration and reiterated that support for the patient and their unpaid caregiver – are critical. Given the millions of caregivers in this country, CMMI’s recognition of their needs as a critical member of the care team, combined with providing them direct support, sets a critical precedent that we believe can be built on and expanded to other Medicare and Medicaid care models.
• State Action Leading to National Change: States are taking action on redesigning their Medicaid benefit for those with serious illness to increase access, quality, and connection to community-based services. We can expect to see many more states joining Hawaii in 2024 in seeking formal approval from the Center for Medicare and Medicaid Services (CMS) to launch these initiatives. Importantly, we believe that CMS and others can learn from the work of these pioneering states in order to standardize and scale care models through national policy levers.

C-TAC’s Policy Impact Overview

1) Payment Model Reform and Demonstrations – Center for Medicare and Medicaid Innovation (CMMI)

The genesis of much of C-TAC’s work was its development of a Medicare payment model that would reward patient-centered comprehensive, high-quality care provided to individuals with serious illness and that supported their family caregivers. We continue to proactively work to ensure that all payment models reflect our core principles for serious illness care, including home-based primary care, palliative care, hospice among the models we advocate for.

• C-TAC continued to work closely with the Center for Innovation to address challenges cited by CMMI in a review of palliative care models to date: enrollment, program design, and ROI in expanding demonstrations for those with serious illness.
• We were pleased to see the launch of the GUIDE Dementia model (see overview here) and shared it broadly with members so those with dementia expertise could apply to participate, and other members will be aware of partnership opportunities.  The 8-year demonstration meets all our Core Principles for Care Models and includes critical supports for those with serious illness such as support for the unpaid family caregiver, the integration of community-based organizations, an upfront payment for infrastructure, and advance care planning.
• Other care model demonstrations that we are actively tracking include AHEAD and the Enhancing Oncology Care Model.

2)  Shaping Medicare Policy with Regulatory Action

2023 has been a banner year in terms of federal rules that promote and pay for key aspects of care for serious illness. Using the regulatory vehicles of Requests for Information (RFIs), rulemaking and public comment, and regular reviews and comments on proposed Medicare measures or measures under consideration, C-TAC has had a significant impact on serious illness care. Several of C-TAC’s comments were acknowledged and even quoted in the final rules:

• Medicare to Pay for New Serious Illness Services: The final 2024 Physician Fee Schedule now includes payment for SDOH assessment, caregiver training services, community health integration services referrals, and principle illness navigation services. These new services apply both to traditional Medicare and Medicare Advantage (MA) programs. Finally, it adds the “Feeling Heard and Understood” quality measure to measure sets for internal and family medicine and oncology.
• Acknowledged C-TAC 2023 Comments: Our comments are acknowledged in the final rules for the following federal programs and services:
  • Medicare Advantage – This clarified our comment that palliative care was appropriate at any stage of serious illness and added palliative care to the list of required services for PACE programs.
  • Physician Fee Schedule – This revised the family caregiver definition and clarified other areas in line with our suggestions.
  • Hospice – This noted our concerns about the administrative burden of oversight audits.
  • ESRD – This noted our suggestion to add caregiver burden to any required SDOH screening.
  • Home Health – This noted and corrected language to confirm that NPs/PAs can develop plans of care, something that only C-TAC had identified. The final rule also noted all of our recommended future measures including adding advance care planning, adding the ‘felt heard and understood’ measure along with measures of palliative care access and utilization and timely and appropriate referral to hospice.

3) Advance Care Planning

Ensuring availability and use of advance care planning (ACP) counseling and advance directives is one of C-TAC’s policy goals. On all fronts, we have and continue to work to expand the coverage for and use of advance care planning to help ensure that patients’ (and their caregivers) care preferences are understood and followed. C-TAC’s ongoing advocacy includes educating policymakers, drafting legislation, crafting amendments, drafting report language, and talking points, and conducting briefings for policymakers.

• C-TAC has led the way with the development and drafting of the Improving Access to Advance Care Planning Act (Senators Warner and Collins -S.4873 and Representative Blumenauer – H.R. 8840). The bill would:
  • Remove the copay/cost-sharing for Medicare ACP Counseling in all situations.
  • Include licensed clinical social workers (LCSWs) in the definition of eligible practitioners who can bill for Medicare ACP Counseling Services.
  • Educate providers about the ACP Counseling Codes and Value of the ACP Counseling.
• C-TAC continued its advocacy in support of legislation to permanently remove the geographic originating site requirement, allowing for telehealth ACP counseling at home and allowing for audio-only telehealth ACP.

• The Uniform Law Commission approved the new Uniform Health Care Decisions Act, an update of the federal legislation that governs advance directives in U.S. This Act authorizes certain people to make health-care decisions for individuals who cannot make their own decisions and have not appointed an agent to do so and establishes certain duties and powers of health-care agents and professionals and shields them from liability if they act reasonably and in good faith. Thanks in part to C-TAC’s input, the new Act now has the following key revisions:

1. Provides a clear standard for determining when an individual lacks capacity.
2. Establishes a process if a patient objects to their incapacity determination.
3. Authorizes new advance directives exclusively for mental health care.
4. Facilitates decisions for someone lacking capacity and lacking a valid power of attorney.
5. Expands who may serve as a “default surrogate” to reflect a wider array of relationships and family structures.
6. Creates a clear list powers and duties for surrogates and enables surrogates to do things like apply for health care insurance, if needed.
7. Includes a model advance directive form for diverse populations in plain language that allows both preferences for types of care, goals, and values.

C-TAC is now sharing this information with members so that states can explore revising their own advance directive forms and process with the goal of reducing unnecessary barriers to advance directives, clarifying when agents may act, includes the new optional form and mental health advance directive, and modernizing default surrogate provisions. This will likely require state legislation, which is a great opportunity for the state coalitions that C-TAC is working with.

• Expanding the Uptake of ACP in the Community has been a C-TAC priority, including bridging the traditionally siloed disciplines of medical care and social services by working to secure additional funding streams to the aging and disability network services to care for the serious illness population.
  • Our current work with USAging involves helping to increase the use of ACP by AAA’s and other CBO’s through C-TAC training programs and a toolkit being developed to support advance care planning expansion for CBO’s.

4) Accelerating State Policy Action

Working with partners at CAPC, NASHP and our state coalition members, C-TAC is supporting state level work to expand palliative care services and other serious illness programs across the nation. Our ACT Index state scorecard has also been an important resource in these efforts, providing state stakeholders with baseline data to help convene, secure funding, identify metrics and best practices, and change public policy. In 2023 there was a tipping point with almost half of states pursuing some kind of serious illness care effort:

• State palliative care task forces – 24 states have legislation around such task forces.
• Palliative care information programs – 21 states have such programs, 16 of which have legislative requirements for palliative care information programs which include information on continuing education, consumer education materials, best practices, etc.
• Palliative care legislative or budgetary progress – 13 states have made palliative care legislative or budgetary progress vs 2022.

Adding to this momentum are efforts in California, Massachusetts, New York, Vermont and many other states to develop Multi-Sector Plans on Aging, which raises awareness of our population and the need for additional services.  States are also critical partners in supporting family and unpaid caregivers through respite care (see evaluation of Maine’s program), reimbursement for the caregiver (10 states in 2023), and caregiver training and education.

Many states are now stepping forward to work on improving care models for those with serious illness, focusing on their Medicaid benefit:

• Hawaii – Finalizing application with the Centers for Medicare and Medicaid and are on track to get approval to add such a benefit via a state plan amendment in early 2024.
• Illinois – They have advanced benefit requirements to cover pediatric palliative care services and are now looking to expand this authority to adults and dual eligible beneficiaries.
• Maine – Passed legislation in 2021 to add such a benefit and are now working out the financial and regulatory details to do so.
• New Jersey – They passed legislation this year and are now working on finding the funding to do the analytical work needed to move towards implementation.
• New York – Received funding to develop a set of policy recommendations and a payment methodology to cover palliative care services for Medicaid beneficiaries and to align these services to the state’s Master Plan on Aging.
• Oregon – Passed legislation to require Coordinated Care Organizations to cover palliative care services to Medicaid beneficiaries throughout the state. This aligns with other requirements to cover services, including palliative care, through value-based payment.
• Virginia – Has drafted legislation for a managed care Medicaid benefit for serious illness.

In addition to this work on Medicaid benefit reform, there are also emerging opportunities with standardizing advance directives, thanks to the efforts of the Uniform Law Commission (see update on Advance Care Planning), as well as payor-provider collaboratives at the state and regional level.

Finally, working with our federal partners, we have asked the Center for Medicare and CHIP Services (CMCS) to issue federal policy guidance on serious illness, which they have not done since 2011 (concurrent hospice care for children). This will help to prioritize key areas of state need and support our CMS policy champions in standardizing key aspects of serious illness care.

5) Advocating for the Consumer in Hospice Reform

The Medicare hospice program remains a major success in our health care system; work to address concerns with program integrity and quality must continue.

• C-TAC regularly participates in the Roundtable Sessions on Hospice Benefit Oversight and other issues conducted by Representative Blumenauer (D-OR-3^rd) and is regularly asked to advise and contribute to various policy analyses from other Hill offices.
• Integrity of the industry amid concerns of fraud, waste, and abuse: four major hospice provider organizations have put forth a set of 34 Hospice Program Integrity Ideas to the Centers for Medicare & Medicaid Services (CMS) and other policymakers to address problems and improve program integrity. C-TAC supports the work of the provider organizations.
• To further advance improvement, C-TAC developed new principles for the program including a call for important consumer protections, including information, quality assurance, and consumer rights.
• Modernization of the hospice benefit: C-TAC supports addressing the limitations of the six-month prognosis rule, allowing concurrent care coverage, and covering upstream palliative care services and supports and services.
  • We are working with congressional champions Rep. Earl Blumenauer (D-OR-3) on the Ways and Means Committee and Senator Mark Warner (D-VA) on the Finance Committee, who in addition to sponsoring the advance care planning bill that C-TAC has championed, are also committed to strengthening the Medicare hospice benefit and expanding palliative care.

• • Our belief that an early comprehensive assessment is key to enabling the right care at the right time has been confirmed by CMS via inclusion of this requirement in the GUIDE Dementia model and payment for most aspects of a comprehensive assessment in the Physician Fee Schedule for 2024.  A comprehensive assessment should assess each person’s physical, social, psychological, and spiritual needs and the needs of the family caregiver(s) on an ongoing basis. This assessment and subsequent care coordination is essential to ensuring that the necessary resources are made available to the individual based on their care preferences and that the most efficient and often also the most-cost effective service delivery is used. This is a crucial part of our approach to hospice expansion and modernization, as well.

As a diverse coalition, C-TAC’s strength lies in the fact that we all agree on a core set of principles that emphasize a person-centered, consumer-oriented focus on the needs of individuals and families throughout a serious illness.  We see hospice modernization as an opportunity to work toward the goal of health equity, as well, since we advocate for particular attention to individuals living with serious illness who are underserved and under-resourced.

6) Additional Legislative Advocacy Actions included working with our bipartisan Congressional champions on the following:

• Expanding Access to Palliative Care Act (Senators Rosen and Barrasso)
• Removing Barriers to Person-Centered Care Act (Senator Whitehouse)
• Provider Training in Palliative Care Act (Senators Rosen and Murkowski)
• Compassionate Care Act (Senator Blumenthal)
• National Hospice and Palliative Care Month (Senator Rosen)
• Palliative Care and Hospice Education and Training Act (PCHETA)
• Helping Our Senior Population in Comfort Environments (HOSPICE Act)

In 2024 we can go even farther. Join us – become a  C-TAC member and attend our 2024 National Leadership Summit, Oct 21-22 in Washington, DC.