The CHANGE Act outlines the difficulties of Alzheimer’s research and education.
Clarifies the need for CMS to communicate the validated, evidence-based detection tools to clinicians under the already existing cognitive impairment detection benefit for Medicare beneficiaries in the annual wellness visit.
Creates a new comprehensive continuum of care framework that brings together the many models already developed and tested for care for Alzheimer’s patients:
- Patients can be enrolled in this framework if diagnosed with Alzheimer’s, regardless of need for a skilled nursing facility or Medicaid eligibility.
- Patients would be offered a variety of highly skilled services and support, including:
- Occupational therapy
- Home health
- Physician care
- Respite care
- Clinical trials
- Speech therapy
- Social worker services
- Meal services
- Transportation services
Many of these services, if administered in early stages, are high-impact but low-cost.
Creates models for offering a continuum of comprehensive care and caregiver support services— models formed under the Act must meet certain requirements, including:
- Models must maintain data to further scientific understanding of the natural history of Alzheimer’s disease, taking into account gender, race, ethnicity, age of onset or other factors.
- Models must provide outreach activities to inform the public of the services of the program, and provide information on Alzheimer’s disease and related dementias to the primary care community and general public.
Creates an innovative model for family caregivers, including:
- Family support services
- Certification for family caregivers similar to home health aides under state criteria
- Family caregiver oversite, including home visits
- Payment to the family caregiver for hours of one-on-one service that is not below the state minimum wage and does not exceed that of a home health aide, if the health plan includes a home health aide
The Act also addresses clinical care and early detection, with the goal of more targeted and earlier diagnosis, and patient participation in clinical trials.
Updates the Medicare Quality Payment Program as of January 1, 2019:
- Promotes healthy brain lifestyle choices
- Identifies and responds to patient risk factors for Alzheimer’s disease
- Incentivizes providers for
- Adequate and reliable cognitive impairment detection in the primary care setting that is documented in the patient’s electronic health record and communicated to the patient
- Timely Alzheimer’s disease diagnosis
- Appropriate care planning services, including identification of and communication with patients and caregivers about the potential for clinical trial participation
Sens. Shelley Moore Capito (R-WV) and Debbie Stabenow (R-MI), and Reps. Linda Sanchez (D-CA) and Peter Roskam (R-IL) are co-sponsors of the CHANGE Act.
The mission of UsAgainstAlzheimer’s is to accelerate treatments and cures for Alzheimer’s disease. The organization drives system change to address Alzheimer’s for families, communities
and the economy.
In 2017, Alzheimer’s and related dementias imposed an estimated $175 billion in direct costs on Medicare and Medicaid with additional billions being spent on indirect costs related to caregiving and other needed services.
Jill Lesser, board member of UsAgainstAlzheimer’s and president of WomenAgainstAlzheimer’s said of the CHANGE act, “The Centers for Medicare & Medicaid Services (CMS) has huge authority with the annual wellness visit. This [change] really doesn’t require legislation. But UsAgainstAlzheimer’s chose to go this route because it’s hard to walk into a legislator’s office and not find a link [to the disease].” Lesser asserted that simple changes to detection and diagnostic practices will help people know the next steps to take and know what they are about to face when diagnosed with Alzheimer’s.
“Dementia care is really exhausting,” said Lesser. “It can be a full-time job. We’re trying to relieve the burden on family caregivers. [We want to] teach them how to care for Alzheimer’s patients better and teach them how to use in-home care in an economically viable way. How can caregivers use community resources and homecare in a way that doesn’t make them go bankrupt?”
One issue the Act helps address is clinical trials through early detection and clinical care.
“When you talk to researchers in a Phase 3 clinical trial or another trial, the biggest barrier is that they don’t have participants,” Lesser said. Therapeutics in clinical trials are meant for patients in the early stages of Alzheimer’s disease, Lesser, said, meaning patients diagnosed in the later stages don’t get the same benefits from clinical trials. “Patients are scared and they aren’t talking to their doctors, and their doctors aren’t talking to them. We need a culture that is going to pay more attention to brain health.”
Lesser elaborated that the CHANGE Act encourages doctors to engage in conversations during the annual wellness visit and the Welcome toMedicare visit, and offers incentives for doing so.
UsAgainstAlzhiemer’s has secured increases in NIH funding to support research, and launched the Global Alzheimer’s Platform to accelerate and build national capacity to test new drugs. The organization created AD-PACE, a patient- and caregiver-led collaboration to deliver new insights to inform researchers, regulators and payers. The organization works to advance equity and access to Alzheimer’s research and resources for communities of color; and also works to transform the health care system by making brain health a priority. UsAgainstAlzheimer’s mobilizes stakeholders across the Alzheimer’s landscape, emphasizing an environment of collaboration, innovation, and disruption.