{"database": "press", "table": "releases", "rows": [["https://www.toomey.senate.gov/newsroom/press-releases/toomey-and-stabenow-continue-fight-against-alzheimers-disease", "Toomey and Stabenow Continue Fight Against Alzheimers Disease", "2020-12-14", "2020", "2020-12", "Republican", "House", "PA", "Patrick Toomey", "T000461", "www.toomey.senate.gov", null, null, "legacy", "Washington,\r\nD.C. \r\nU.S. Senators Pat Toomey (R-Pa.) and Debbie Stabenow (D-Mich.), the chairman\r\nand ranking member of the Senate Finance Subcommittee on Health Care, are once\r\nagain working together to improve care for Alzheimer's patients and expand\r\nresources for caregivers. In\r\na letter to U.S. Secretary of Health and Human Services Alex Azar, the pair\r\nshares a number of recommendations collected from health care providers,\r\nresearchers and scientists, patient advocacy groups, states, and other experts. The\r\nrecommendations are derived from a February\r\nrequest for information issued by Chairman Toomey and Ranking Member\r\nStabenow seeking input from experts about how to make meaningful improvements\r\nto the detection, education, treatment, and support for patients and families\r\naffected by Alzheimer's disease and related dementias. To date, more than 200\r\npolicy recommendations have been received from over 30 organizations. In\r\nthe letter, Chairman Toomey and Ranking Member Stabenow stated: As the Chair and Ranking Member of the\r\nSenate Committee on Finance Subcommittee on Health Care, we are committed to\r\nadvancing efforts to meet the goals set forth in NAPA as well as improving care\r\nfor existing and future patients. In February, we published a request for\r\ninformation from experts and stakeholders to inform our regulatory and\r\nlegislative efforts. Specifically, we inquired about mechanisms that could\r\npromote care coordination for Alzheimer's disease patients enrolled in federal\r\nhealth programs, improve disease detection, enhance the affordability and\r\naccessibility of long-term care, strengthen protections for vulnerable\r\nindividuals, and incentivize the development of cures. In response, we received\r\n36 comment letters comprised of more than 200 policy recommendations. Today, we\r\nare asking you to review a subset of these recommendations and take specific\r\nactions to make progress toward these important goals. The\r\nletter in its entirety is below. It is available online with footnotes here. October\r\n21, 2020 The\r\nHonorable Alex M. Azar II Secretary U.S.\r\nDepartment of Health and Human Services (HHS) 200\r\nIndependence Avenue, SW Washington,\r\nDC 20201 Dear\r\nSecretary Azar: We\r\nwrite on behalf of the estimated 5.8 million Americans currently living with\r\nAlzheimer's disease. Beyond the individual cognitive decline and vast\r\npsychological and emotional consequences for families, the costs to society of\r\nAlzheimer's disease are staggering. For instance, a 2013 study funded by the\r\nNational Institute on Aging (NIA) estimated the total annual cost of dementia\r\nin the United States to lie between $159 billion and $215 billion, with that\r\nfigure projected to grow to between roughly $379 billion and $511 billion by\r\n2040. Moreover, after adjusting for an individual's underlying health\r\nconditions and demographics, the same study estimated the annual cost of\r\ninformal caregiving attributable to dementia to range between $13,188 and\r\n$27,789 per person. For Medicare, the nation's largest public health care\r\npayer, dementia-specific costs imposed an additional $2,752 per person on the\r\nprogram. Nearly\r\na decade later, much work remains to address the momentous societal costs of\r\nAlzheimer's disease and related dementias. Currently, pharmacological\r\ninterventions are unable to cure or even effectively treat the relentless\r\nprogression of Alzheimer's disease. Congress has long recognized the\r\nchallenges facing Alzheimer's disease patients and their families, and in 2011,\r\npassed the National Alzheimer's Project Act (P.L. 111-375; NAPA). This landmark\r\nlegislation put forth the laudable goal of finding a cure and treatment by\r\n2025. As\r\nthe Chair and Ranking Member of the Senate Committee on Finance Subcommittee on\r\nHealth Care, we are committed to advancing efforts to meet the goals set forth\r\nin NAPA as well as improving care for existing and future patients. In\r\nFebruary, we published a request for information from experts and stakeholders\r\nto inform our regulatory and legislative efforts. Specifically, we inquired\r\nabout mechanisms that could promote care coordination for Alzheimer's disease\r\npatients enrolled in federal health programs, improve disease detection,\r\nenhance the affordability and accessibility of long-term care, strengthen\r\nprotections for vulnerable individuals, and incentivize the development of\r\ncures. In response, we received 36 comment letters comprised of more than 200 policy\r\nrecommendations. Today, we are asking you to review a subset of these\r\nrecommendations and take specific actions to make progress toward these\r\nimportant goals. RECOMMENDATIONS PROMOTE\r\nCOORDINATED, QUALITY CARE Develop\r\nNew Demonstration Projects: We encourage the Centers for Medicare &\r\nMedicaid Services (CMS) or the Center for Medicare & Medicaid Innovation\r\n(CMMI) to create and test alternative payment and coordinated care models\r\ntargeted toward Medicare and/or Medicaid beneficiaries with Alzheimer's disease\r\nthat would improve care coordination, reduce duplicative service utilization,\r\nand increase the quality of care.Develop\r\nQuality Indicators for Dementia Care Services: To ensure quality of care for\r\nenrollees in federal health programs, we encourage CMS to assess the state of\r\nquality indicators for dementia care services. Alzheimer's disease patients\r\noften utilize a variety of services such as adult day programs, meal and\r\ntransportation services, and memory care centers. Yet, CMS has not produced clear\r\nguidance for state Medicaid programs and Medicare Advantage plans on what\r\nmeasures are meaningful for Alzheimer's disease patients' health outcomes and\r\nquality of care. Similarly, new quality measures for Programs of All-Inclusive\r\nCare for the Elderly (PACE) organizations could allow patients and their\r\ncaregivers to make more informed decisions. In a February 2020 report, the\r\nNational Quality Forum's Measure Application Partnership encouraged CMS to\r\nprioritize measure development for this patient population. We urge HHS and CMS\r\nto review existing quality reporting programs and other payment systems in\r\nwhich quality reporting is lacking within the Medicare and Medicaid programs.\r\nMoreover, we urge HHS to establish a plan to implement specific quality care\r\nindicators for services heavily utilized by Alzheimer's disease patients.Issue\r\nGuidance for Comprehensive Care Practices: In 2019, the NAPA Advisory Council\r\nrecommended that HHS form a working group to determine best care practices for\r\nAlzheimer's disease patients. We urge HHS to quickly implement this\r\nrecommendation, and once identified, work with the relevant agencies to issue\r\nguidance to health plans and providers detailing these practices.Increase\r\nCoordination of Care Planning: CMS is reviewing comments from stakeholders\r\nregarding wider adoption of interoperable health information technology (IT)\r\nsystems across long-term care settings. Inclusion of items, such as a\r\npatient's care plan, could enhance care coordination of health and social services\r\nthat support cognitively impaired individuals. We recommend that CMS continue\r\nto work with providers, patients, and their caregivers to facilitate mobility\r\nof this information across care settings. Encouragement from CMS of documenting\r\nin a patient's medical record the name of a family member or caregiver, as well\r\nas any advance directives, could also improve care coordination.Review\r\nPatient Access to Palliative Care: Palliative care encompasses a set of\r\nservices that provide medical, social, emotional, and practical support for\r\npeople living with serious illness. Several of our stakeholders expressed\r\ntheir support for expanding coverage and access to palliative care in federal\r\nhealth programs, including traditional Medicare, Medicare Advantage, and Medicaid.\r\nWe encourage CMS to review current access to palliative care and report to\r\nCongress on areas such as provider prevalence, cost, and quality of care.Create\r\na Nursing Home Staff Database: Nursing home medical directors play an important\r\nrole in the coordination and quality of care for patients with Alzheimer's\r\ndisease residing in long-term care facilities. We urge CMS to establish and\r\noperate a publicly available database for nursing home medical directors so\r\nthat families and caregivers have a reliable source of contact. Such a database\r\ncould be posted to the CMS website in a similar fashion to how CMS posts\r\nMedicare Part D contact information. LEVERAGE\r\nTELEHEALTH SERVICES Revise\r\nthe Limit on Billable Telehealth Visits for Nursing Care Facilities: Currently,\r\nCMS allows just one telehealth visit every 30 days in nursing care\r\nfacilities. Several of our stakeholders argue that this policy is\r\narbitrary and limits access to care for patients living with Alzheimer's\r\ndisease in institutional settings. CMS has attempted to address this concern by\r\nrevising the limit to once every three days in its proposed physician fee\r\nschedule rule for calendar year 2021. CMS has also noted the potentially\r\ngreater acuity and complexity of Medicare beneficiaries in nursing care\r\nfacilities, as well as the importance of in-person care in that context.\r\nWe find access to telehealth in this setting to be important to the care\r\nprovided to Alzheimer's disease patients, and we support CMS efforts to expand\r\ntelehealth access across settings where clinically appropriate and with\r\nadequate beneficiary protections in place. STRENGTHEN\r\nTHE PACE PROGRAM FOR ALZHEIMER'S DISEASE PATIENTS Implement\r\nCongressionally-Intended PACE Pilot Demonstrations: In 2015, the PACE\r\nInnovation Act (P.L. 114-85) authorized CMMI to test the PACE model for\r\nnew populations with complex and special needs. Rather than test PACE-specific\r\nmodels, however, CMMI has requested PACE organizations (POs) apply to a\r\nseparate Direct Contracting model focused on primary care. In a Senate\r\nCommittee on Finance Report, the Committee stated the intent of the\r\nlegislation was to test changes to the PACE model, either through an expansion\r\nof eligibility standards and/or changes to administrative requirements that\r\nwould enable greater enrollment. Based on stakeholder information we have\r\nreceived, we believe the existing Direct Contracting model does not provide the\r\nflexibility necessary to test PACE-specific models. We request that CMMI follow\r\nthe intent of the statute to create a PACE-specific model.Improve\r\nthe PACE Application Process: By law, PACE-eligible individuals must reside in\r\nthe service area of their applicable PACE program. Moreover, CMS only\r\nreviews service area expansion applications on a quarterly basis and POs are limited\r\nto one pending application under CMS review at a time. , Thus, we request\r\nthat CMS review PACE service area expansion applications more frequently and\r\nallow POs to submit more than one service area expansion application at a time.\r\nFurthermore, CMS must prioritize timely review of service expansion\r\napplications and other updates to the program to ensure the federal government\r\nis not a barrier to access for individuals who may benefit from PACE\r\nenrollment. CONSOLIDATE\r\nRESOURCES FOR CAREGIVERS AND PATIENTS Establish\r\na Centralized, Alzheimer's Disease-Specific Portal for Patient and Caregiver\r\nResources: Patients living with Alzheimer's disease, along with their\r\ncaregivers, must often navigate a series of complex decisions involving\r\nlong-term care planning and the various institutional or community-based\r\nservices available to them. Currently, HHS, its agencies, and state and local\r\nhealth departments maintain platforms with information about these issues for\r\npatients and caregivers. Our stakeholders believe that Alzheimer's\r\ndisease patients and their caregivers could benefit from a more unified\r\nplatform that streamlines all the information and resources available to them.\r\nWe urge HHS to undertake a review of its current Alzheimer's disease-related\r\nresources and consolidate the relevant information for patients and caregivers\r\ninto a single online resource portal. This can be done through expansion of an\r\nexisting federal resource portal. Information that our stakeholders believe\r\ncould be valuable in such a portal include the following:Resources\r\nfor long-term care planning and clarification on the long-term care benefits,\r\nand eligibility for such benefits, under Medicare fee-for-service, Medicare\r\nAdvantage, Medicaid, and other relevant federal health care programs;Descriptions\r\nof the types of long-term care facilities and care options available to\r\nAlzheimer's disease patients, including institutional settings and home- and\r\ncommunity-based services;Resources\r\nfor federal- and state-sponsored caregiver support and training programs;Information\r\nabout clinical trial enrollment, including links to existing registries and\r\nsupport for patients currently enrolled in clinical trials;Educational\r\nresources about Alzheimer's disease and developments in the process toward a\r\ncure and treatment;Information\r\non identifying and preventing elder abuse, neglect, and exploitation;Material\r\non services and devices to improve patient safety, like GPS and web-based home\r\nmonitoring services for Alzheimer's disease patients who suffer from wandering\r\nor navigational issues. INCREASE\r\nTHE USE AND EFFECTIVENESS OF COGNITIVE SCREENS  Address\r\nResearch Gaps for Cognitive Screens: The U.S. Preventive Services Task Force\r\nhas concluded that evidence regarding the effectiveness of cognitive impairment\r\nscreening is insufficient to support a recommendation for its routine use. As a\r\nresult, insurers are not required to cover this service and are also allowed to\r\napply cost sharing if they do. Ensuring that appropriate wrap-around services\r\nare provided at the right time in a patient's diagnosis could reduce avoidable\r\nhospital and emergency department visits and as a result, potentially mitigate\r\nfederal health care expenditures. , , Thus, it is imperative that\r\nresearch into the potential benefits of improved cognitive screens and other\r\nmeans by which providers diagnose Alzheimer's disease are prioritized by HHS so\r\nthat a more robust body of literature surrounding their use can be established.Encourage\r\nUse of Evidence-Based Cognitive Assessment Tools: One objective of Medicare's\r\nannual wellness visit (AWV) is to detect cognitive impairment of an individual,\r\na clear symptom of Alzheimer's disease and related dementias. We ask that CMS\r\nrecommend the use of an evidence-based cognitive assessment tool during AWVs\r\nrather than direct observation. Ensuring the results of such assessments\r\nbe made available in the beneficiary's electronic health record (EHR) could\r\nalso aid in care coordination.Encourage\r\nUse of the Health Risk Assessment (HRA) to Assess Cognitive Function: Given the\r\nrelatively low uptake in the AWV, we ask that CMS encourage Medicare\r\nAdvantage plans to use their HRAs to assess cognitive function and the\r\npotential long-term care needs of seniors. Plans are provided significant\r\nflexibility in what they include in the HRA. While some plans provide for a\r\ncognitive screening, not all plans do. These visits and assessments provide\r\nample opportunity for the identification of cognitive disorders such as\r\nAlzheimer's disease, which could lead to more timely coordination of care. FOSTER\r\nINNOVATION FOR ALZHEIMER'S DISEASE THERAPIES AND DIAGNOSTICS Prioritize\r\nAlzheimer's Disease within the Food and Drug Administration's (FDA) Complex\r\nInnovative Trial Designs (CID) and Model-Informed Drug Development (MIDD)\r\nPrograms: The FDA is currently operating two pilot programs, the CID and MIDD,\r\nwhich aim to increase the efficiency of the clinical trial process for\r\ninnovative therapies and improve the likelihood of their success throughout the\r\nregulatory approval process. In particular, the CID provides opportunities for\r\nenhanced dialogue with FDA officials during the trial design process, and the\r\nMIDD provides sponsors the chance to collaborate with officials on precise\r\nrisk-benefit models for the drug. , We urge HHS to consider the merit of\r\nincorporating more Alzheimer's disease therapeutic sponsors into these pilot\r\nprograms.Accelerate\r\nDevelopment of Diagnostics: We encourage the National Institutes of Health and\r\nNIA to establish a program akin to the Rapid Acceleration of Diagnostics (RADx)\r\ninitiative for COVID-19 with the goal of bringing to market an affordable and\r\nnon-invasive point-of-care diagnostic for Alzheimer's disease. If such an\r\ninitiative would require legislation, we urge you to work with us on the\r\ndevelopment and passage of such a law. CLARIFY\r\nAND IMPROVE ACCESS TO CERTAIN SERVICES Review\r\nthe 2014 Qualified Settings Rule for Home- and Community-Based Services: In\r\n2014, CMS finalized a definition for home- and community-based settings.\r\nStakeholders expressed concern that parts of the rule intended to promote\r\ncommunity integration or strengthen facility security are not appropriate for\r\ncognitively impaired individuals. One stakeholder expressed concern that the\r\nrequirement of locks on doors to strengthen privacy can pose a threat to\r\npatients with dementia. We urge CMS to review the regulation and issue guidance\r\nor best practices to states about how settings that provide services to\r\nindividuals with Alzheimer's disease can best meet the requirements in the\r\nregulation. This can either be achieved through setting-specific policies and\r\npractices or through modifications to person-centered service plans.Evaluate\r\nand Expand Access to CPT Code 99483: CPT code 99483 reimburses providers for\r\nundertaking functional assessments and care planning services for individuals\r\nliving with cognitive impairment. Unfortunately, the most recent utilization\r\ndata suggests that only a small fraction of eligible seniors are receiving the\r\nbenefit. We encourage CMS to conduct education and outreach to increase\r\nawareness of and access to the code. Additionally, some stakeholders assert that\r\nthe documentation requirements for the code's billing are too complex and prone\r\nto deficiencies for some providers. We encourage CMS to review the billing\r\nrequirements for CPT Code 99483 to ensure such requirements are not uniquely\r\nonerous. Billing requirements should also require proper documentation in the\r\npatient's medical record or EHR. We\r\nthank you for your continued engagement on one of the most pressing health care\r\nissues of our time  addressing the scourge of Alzheimer's disease. As we continue\r\nour efforts to support the Alzheimer's disease community, we ask that you\r\ntransmit any legislative recommendations that the Administration may have in\r\nthe aforementioned areas of care coordination, long-term care accessibility,\r\nand the development of a treatment and/or cure for Alzheimer's disease. We look\r\nforward to your response and a commitment to improve care delivery for this\r\npatient population.", 1, "2026-03-30T12:14:52Z", "2026-03-30T12:14:52Z"]], "columns": ["url", "title", "date", "year", "month", "party", "chamber", "state", "member_name", "bioguide_id", "domain", "scraper", "source", "date_source", "text", "has_text", "collected_at", "updated_at"], "primary_keys": ["url"], "primary_key_values": ["https://www.toomey.senate.gov/newsroom/press-releases/toomey-and-stabenow-continue-fight-against-alzheimers-disease"], "units": {}, "query_ms": 1.7166049219667912, "source": "dwillis/congress-press", "source_url": "https://github.com/dwillis/congress-press", "license": "MIT", "license_url": "https://github.com/dwillis/congress-press/blob/main/LICENSE"}