Advocacy Updates 2013
AFA provides periodic advocacy updates designed to give a brief overview of AFA’s advocacy efforts and legislative activity.
The Government Shutdown: What Caregivers Should Know
As the federal government shutdown continues, the Alzheimer's Foundation of America is providing this update on how the shutdown may impact people with Alzheimer's disease, their caregivers and families, many of whom rely on federal programs for funding and services. The breadth and scope of these effects will be largely dependent on the length of the shutdown. Following is an overview of the impact on some key programs.
Medicare and Medicaid:
Medicare and Medicaid are not funded by the annual appropriations process, so these programs will not face huge challenges during the shutdown. Moreover, under federal law, states would eventually get paid back for any lapses in Medicaid payments—even if the shutdown lasts for an extended period of time. While providers, such as nursing homes, home health agencies and physicians, serving these programs could anticipate administrative delays, consumers should not be affected.
National Institutes of Health (NIH):
The NIH is the world's biggest source of funding for medical research. During a regular week, the NIH typically would enroll approximately 200 new participants in clinical trials that are testing new treatments, including those for Alzheimer's disease.
The U.S. Department of Veterans Affairs says it has enough money to process veterans' claims for pensions, compensation, education and vocational rehabilitation programs through late October, but a prolonged shutdown would suspend those programs once the money runs out.
Social Security Administration (SSA):
Beneficiaries, including people with Alzheimer's disease and their caregivers, rely on regular Social Security and Supplemental Security Income payments.
Older American Act (OAA) Programs:
Federal funding for OAA programs provide grants to localities for senior and caregiver support services, such as Meals on Wheels, adult day care, respite services and caregiver training. Depending on the length of the shutdown, these programs—many of which are critical to people with Alzheimer's disease and their families—may have to halt operations as funds dry up. While some programs may have additional revenue streams (i.e., private contributions) that could keep them operating for an unspecified amount of time beyond the government shutdown, these programs are not receiving federal funds as of October 1.
Food and Drug Administration (FDA):
The FDA is currently unable to support the majority of its activities related to food safety, nutrition and cosmetics. However, the agency is able to review medical products that are supported by user fees paid for by pharmaceutical companies and device manufacturers.
Congresswoman Waters Named Co-Chair of Alzheimer’s Task Force
Congresswoman Maxine Waters (D-CA) has been named the new co-chair of the Congressional Task Force on Alzheimer’s Disease. Waters succeeds Rep. Ed Markey (D-MA) as co-chair, following his swearing in as senator from Massachusetts, and will lead the caucus with Congressman Chris Smith (R-NJ).
Meanwhile, Waters has introduced two bills that will be of enormous value to people with Alzheimer's disease and their family caregivers:
AFA urges you to call your congressional representative and ask him or her to contact Waters' office and sign on as co-sponsors of both pieces of legislation. Contact your representative via the Capitol Hill switchboard at 202-225-3121. Don't know who to contact? Visit www.contactingthecongress.org.
Comments In on Proposed National Medicare Coverage for Amyloid PET Scans
The Centers for Medicare and Medicaid Services (CMS) will begin reviewing comments on its “Proposed Decision Memorandum on National Coverage Analysis (NCA) for Beta-Amyloid Positron Emission Tomography (Aβ PET) in Dementia and Neurodegenerative Disease.” CMS issued its draft decision July 3 and was accepting comments through August 2 in preparation for making a final determination.
In its proposed decision, CMS determined that the evidence is insufficient to conclude that the use of this imaging improves health outcomes for Medicare beneficiaries with dementia or neurodegenerative disease. It did note sufficient evidence that the use of PET Aβ imaging could be promising in two scenarios: (1) to exclude Alzheimer’s disease in narrowly defined and clinically difficult differential diagnoses, and (2) to enrich clinical trials seeking better treatments or prevention strategies for Alzheimer’s disease.
In its comment letter to CMS, AFA called the draft decision “too restrictive” and urged the agency to revisit its determination to allow for more expansive Medicare coverage of this FDA-approved diagnostic tool when appropriate in select populations, such as complex or inexplicable cases or individuals with progressive dementia at early age of onset.
“AFA has concerns about the potential consequences of the proposal as drafted, including its effect on innovation and technology in the Alzheimer’s disease research space and its impact on individuals with Alzheimer’s disease and other dementias, and their family caregivers,” the letter said.
At its quarterly meeting on July 19, the Advisory Council on Alzheimer’s Research, Care, and Services provided updates on the implementation of the “National Plan to Address Alzheimer’s Disease,” and heard testimony from guest witnesses on several issues of concern to the dementia population.
Among the research updates, the National Institute on Aging (NIA) announced Fiscal Year 2013 Alzheimer’s disease research funding opportunities. It also announced introduction of Webinars to improve coordination of federal resources available to assist people with dementia and their family caregivers, and to encourage awareness of research participation opportunities; a searchable cognitive impairment detection instruments database; and a new online blog for researchers. It was also reported that the National Institute for Nursing awarded two grants focusing on diverse and minority caregiver interventions.
In the area of clinical care, the Centers for Medicare and Medicaid Services (CMS) reported that 30-day hospital readmissions are at a historic low among Medicare beneficiaries. CMS is also evaluating a proposed national Medicare coverage determination for a beta amyloid PET scan and encouraged stakeholders to weigh in during the comment period, which closes August 2.
In implementing long-term care services and support provisions, the Administration for Community Living (ACL) announced a new set of Alzheimer’s Disease Supportive Services Program grants, caregiver Webinars in conjunction with the Department of Veterans’ Affairs, and a new mobile app with select tip sheets on caregiving from the Alzheimer’s Disease Education and Referral (ADEAR) Center. Progress was also cited in CMS’ National Partnership to Improve Dementia in Nursing Homes and other efforts to lower the use of anti-psychotics in institutional settings.
Guest witnesses provided additional testimony on consumer protections, the state of long-term care insurance, and awareness-raising efforts. Naomi Karp, a policy analyst in the Office for Older Americans, Consumer Financial Protection Bureau (CFPB), said initiatives underway at OA include developing a fraud awareness program and producing a guide for operators of congregate facilities to give seniors residing in long-term care facilities the skills to identify and intervene in exploitation cases.
An analyst for the long-term care insurance industry, Marc A. Cohen of LifePlan Inc., stated that policies are not meeting the long-term care needs of mid-market consumers. Consumer needs include lower premiums, greater product flexibility, and new forms of combination products.
Hunter McKay, a social science analyst at ACL, said the agency, after analyzing lessons learned from its long-term care awareness campaign, plans to move forward with its outreach by selecting new and appropriate partners, listening to target audiences before developing future content, and employing strategies that are in the target audience’s “comfort zone.”
The next meeting of the Advisory Council on Research, Care and Services is set for October 28 in Washington, D.C.
The U.S. Department of Health and Human Services (HHS) released the “The National Plan to Address Alzheimer's Disease: 2013 Update” on June 14, the annual iteration of the plan as mandated under the National Alzheimer’s Project Act (NAPA).
In a statement, Alzheimer’s Foundation of America (AFA) President Carol Steinberg noted the projects underway or completed since the “National Plan to Address Alzheimer’s Disease” was released last May have “laid the groundwork for substantial change,” and that new action steps in the revised plan “hold the promise of building upon the existing good work of this historic plan.”
However, “Our nation has the opportunity to do more to halt this monumental public health crisis,” she said. “Recent efforts to boost federal funding, while admirable, fall far short of meeting impending need and challenges. Only if Congress rallies for abundant resources can we turn the tide before it is too late for current and future generations of Americans.”
The revised plan specifically notes progress as well as plans to further develop, promote and disseminate best practices related to care for people with Alzheimer’s disease, and their caregivers. Several new action steps mirror recommendations made by AFA in our “Time to Build” report, which include: developing and disseminating a unified primary care Alzheimer’s disease curriculum; enhancing understanding of avoidable hospitalizations and emergency department use among people with Alzheimer’s disease; educating fiduciaries about managing the finances of people with Alzheimer’s disease; and enhancing public outreach about Alzheimer’s disease.
The update also identifies additional action steps that HHS and its partners will take, including detection of elder abuse and neglect through aging networks and Alzheimer’s disease program providers; demonstration grants to help promote legal services groups that assist families and communities impacted by Alzheimer's disease; and an expanded Dementia Capability Toolkit for state and local health networks to bolster services in their communities.
HHS also cited action steps that were completed during the first year of the plan. These provisions included:
AFA is continuing to work with the Administration, Congress, the Advisory Council on Research, Care and Services, and other Alzheimer’s disease stakeholders to implement and secure the funding necessary to meet the ambitious goals of the national Alzheimer’s plan.
The next meeting of the Advisory Council on Research, Care and Services is set for July 19 in Washington, D.C.
While officials said that the U.S. Secretary of Health and Human Services is still reviewing recommendations from the council's last meeting in January and proposals submitted by other stakeholders, including the Alzheimer's Foundation of America's "Time to Build" report, they did offer a preview of the revised plan. Among the new action steps will be:
Witnesses included the daughter and caregiver of Glen Campbell, the legendary musician who was diagnosed with Alzheimer’s disease in 2011. In emotional testimony presented with her father at her side, Ashley Campbell exclaimed that Alzheimer’s disease “robs one of life while they are still living.” She called on Congress to support the President’s fiscal year 2014 budget request for $100 million in increased funding to help advance implementation of the “National Plan to Address Alzheimer’s Disease.”
Other panelists discussed the implementation of the national Alzheimer’s plan and the impact of the disease on the nation’s economy. Don Moulds, Ph.D., Acting Assistant Secretary for Planning and Evaluation and designated federal employee for the national Alzheimer’s plan, told the senators that while the plan has “made great progress, much work remains.” He disclosed that the revised national plan, as required by statute, will be released in mid-May.
Ronald Peterson, M.D., Ph.D., chair of the Advisory Council on Care, Research and Services, which provides guidance on the national plan, said that $2 billion is needed to adequately fund Alzheimer’s disease research. Asked how close we are to a cure, he suggested the field is “just poised of making a huge breakthrough.”
Michael Hurd, Ph.D., director of the RAND Center for the Study of Aging and author of the center’s recent study on the tab of dementia care in the United State, testified that Alzheimer’s disease cost $109 billion in professional healthcare costs, making it the most costly condition faced by Americans. Click here to read witnesses’ written testimony.
Senate Aging Chair Bill Nelson (D-FL) and Ranking Member Susan Collins (R-ME) called Alzheimer’s disease the defining condition of the baby boom generation and stressed that work needs to be done to ensure that does not define the next generation as well. Both senators commented on the huge disparities in funding for Alzheimer’s disease research compared with other disease states and committed to continue pressuring their colleagues and the Administration to provide resources to fight the disease.
These comments closely mirrored the statement released just prior to the hearing from Carol Steinberg, the Alzheimer’s Foundation of America’s acting CEO, who called on Congress to push Alzheimer’s disease funding “to the next level.” To read the complete testimony submitted by AFA, click here.
Policymakers to Address Issues at Hearing, Meeting
On April 29, the Advisory Council on Alzheimer's Research, Care, and Services, advising on the “National Plan to Address Alzheimer’s Disease,” will meet from 9:00 a.m. to 5:00 p.m. (ET) in Washington, DC. The meeting will be Webcast live on http://www.hhs.gov/live.
Help Advance Alzheimer’s-Related Legislation in New Congress
AFA has expressed its support for these proposals and encourages Alzheimer’s disease stakeholders to help advance these proposals by asking their Congressional representatives to sign on in support of the legislation.
To find your representative, visit www.contactingthecongress.org. To reach members of Congress, call the Capitol Hill switchboard at 202-225-3121. Act today! Together, we can make our voices heard for care and cure.
The HOPE Act: Senators Debbie Stabenow (D-MI) and Susan Collins (R-ME) along with Representatives Chris Smith (R-NJ) and Ed Markey (D-MA) have introduced The Health Outcomes, Planning and Education (HOPE) for Alzheimer's Act. The legislation, S.709 in the Senate and HR 1507 in the House, provides Medicare reimbursement to help increase the detection and diagnosis of Alzheimer's disease and other dementias. Specifically, the HOPE Act would establish a new benefit for Medicare beneficiaries for diagnostic and care planning services for people with Alzheimer’s diseases and related dementias. It would also ensure that an Alzheimer's disease or dementia diagnosis is included in the individual's medical record.
AFA has long supported efforts to increase awareness and benefits of early detection of Alzheimer’s disease and related dementias, as highlighted by its annual National Memory Screening Day. In addition, the legislation would advance several provisions that AFA had suggested for inclusion in the “National Plan to Address Alzheimer’s Disease,” including educating and supporting individuals with Alzheimer’s disease and their family caregivers with care planning options.
The MIND Act: Representative Michael Burgess (R-TX) introduced HR 1619, the Making Investments Now for Dementia (MIND) Act, which would authorize the establishment of United States Alzheimer’s Bonds. The revenues generated by the sale of the bonds, much like security bonds, would be directed to the National Institutes of Health solely for Alzheimer’s disease research. The legislation has bipartisan co-sponsorship, including Representatives Smith and Markey.
In a statement, Eric Sokol, AFA’s vice president of public policy, noted in part: “In these times of fiscal restraint, it’s necessary to be creative in finding funding sources to meet this escalating need. Issuing bonds has always been a traditional way of raising money for a common good. Americans who want to do good for the current and future generations will stand up and put their money in an investment that will pay big dividends for us as a nation.”
Older Americans Act Reauthorization: Senator Bernie Sanders (I-VT) is circulating a letter to his fellow senators requesting their signatures in support of a request to Senate Appropriations Labor/HHS/Education Subcommittee leaders to increase funding support for programs under the Older Americans Act (OAA). These programs include nutrition, supportive services and caregiver supports. AFA is requesting $2.5 million for the Lifespan Respite Care Program and $154 million for the National Family Caregiver Support Program for Fiscal Year 2014.
AFA calls on all Alzheimer’s stakeholders to contact their senators and urge them to sign on to Sanders’ “Dear Colleague” in support of OAA reauthorization. Sanders’ office will be collecting signatures until close of business on April 24.
Missing Alzheimer’s Disease Patient Alert Program: Representative Maxine Waters (D-CA) is requesting a $2 million appropriation in the Fiscal Year 2014 Commerce-Justice-Science (CJS) appropriations bill for the Missing Alzheimer's Disease Patient Alert Program. The program helps local communities and law enforcement officials locate persons with Alzheimer’s disease who wander away and become lost.
Obama Administration Boosts Funding for Alzheimer’s Disease Research and Care in Proposed FY2014 Budget
Overall, the U.S. Department of Health and Human Services (HHS) will spend $562 million on Alzheimer’s disease research under the President’s 2014 budget plan. Included in this spending is an additional $80 million in the National Institutes on Aging’s budget to speed Alzheimer’s disease drug development and test new therapies; and $20 million for the Alzheimer’s Disease Initiative, with $15 million to the Administration on Aging to strengthen state and local dementia intervention capabilities and for outreach, and $5 million to the Health Research and Services Administration wto expand efforts to provide training to healthcare providers on Alzheimer’s disease and related dementias.
The budget does, however, contain cuts to some important programs that support people with Alzheimer’s disease and their family caregivers. The Missing Alzheimer’s Disease Patient Alert Program, for example, a small but effective program that helps local communities and law enforcement officials locate persons with Alzheimer’s disease who wander away and become lost. The program was “zeroed” out, thus receiving no funding.
In addition, the budget spells out plans to slash $400 billion in Medicare and HHS spending over 10 years through cuts to provider payments and enhanced fraud and abuse efforts . Some seniors could also see a rise in out of pocket costs: the President’s budget would require wealthy seniors to pay a higher share of certain Medicare benefits, and, beginning in 2017 beneficiaries face a copay for certain services by home health care and establish an added premium for supplemental insurance policies known as Medigap plans.
In a statement, the Alzheimer’s Foundation of America (AFA) applauded the Administration for budget increases in Alzheimer’s disease research and caregiver services, noting that they reinforce the Obama Administration’s recognition that the status quo is inadequate to meet the growing needs anticipated by the “silver tsunami” as our population ages. AFA said it understands the current fiscal climate, but hopes that these modest increases are just the beginning and that research investments in Alzheimer’s disease in future budgets will be more in line with monies for other chronic disease states.
AFA will look forward to working with the Administration, Alzheimer’s disease stakeholders and champions in Congress to realize these increases and ensure that are included in a final budget package for FY 2014.
AFA Sets its Priorities for New Congress
In addition, several members of Congress known as long-time champions of Alzheimer’s disease research and caregiving issues have attained positions in the new Congress, which could further propel Alzheimer’s disease into a major priority item despite federal budget cuts. Among them, Senator Barbara Mikulski (D-MD) now chairs the Senate Appropriations Committees that fund government programs at the National Institutes of Health (NIH), and Senator Susan Collins (R-ME) now serves as the ranking member on the Senate Aging Committee.
Hoping to significantly advance the cause, especially in light of the goals presented in the federal government’s historic “National Plan to Address Alzheimer’s Disease,” AFA has set its policy priorities for this session. They include:
The Advisory Council on Alzheimer's Research, Care and Services met on January 14 to discuss the progress on research, clinical services and long-term care services included in the historic "National Plan to Address Alzheimer's Disease," and to consider recommendations to the revised plan set to be released in April.
Non-federal members unanimously passed numerous recommendations for the U.S. Department of Health and Human Services (HHS) to consider including in the updated plan. Recommendations that mirror those made by AFA in its latest report on the national plan, “Time to Build,” include:
Clinical Care Subcommittee:
Long-Term Care Support Subcommittee:
Absent from these recommendations were AFA’s call, in its “Time to Build” report, for provisions such as tax credits for caregivers, adoption of hospital and emergency room protocols for individuals with dementia, new transitional housing as an alternative to institutional care, and extending Medicare coverage and AoA programs to all people with Alzheimer’s disease, regardless of age
Also at the meeting, federal officials gave updates on the implementation of the national plan. Among the research updates, the National Institutes of Health (NIH) announced publication of the “2011-2012 Alzheimer’s Disease Progress Report,” and that it will be convening a scientific workshop on dementias on May 1 and 2.
As part of the clinical care progress report, CMS unveiled a new Patient and Family Engagement Campaign (PFEC), aimed at improving person-centered care and family engagement, and a Community Care Transitions Program (CCTP) to improve the effectiveness, efficiency, economy, and quality of services delivered to Medicare beneficiaries.
In presenting an update on long-term services and supports, AoA noted the development of a new Healthy Brain Initiative Roadmap for public health; Webinar series on legal issues for lawyers who have clients with dementia; a new workforce competency model that addresses cognition; and new quality measures as part of the National Partnership to Improve Dementia Care. AoA also announced the publication of the second edition of “Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners.”
The next advisory council meeting is set for April 29 in Washington, DC.
AFA Releases ‘Time to Build’ Report With Recommendations to Update National Alzheimer’s Plan
Noting that “more needs to be done” to tackle the escalating incidence of Alzheimer’s disease, AFA in early January released a report that includes more than three dozen recommendations to build upon the current goals of the federal government’s historic national Alzheimer’s plan and take the initiative to the next level.
AFA’s new report, entitled “Time to Build,” notes that the inaugural plan “provides solid stepping stones toward substantial change.”
However, said Eric J. Hall, AFA’s president and CEO, and the report’s author, “Our nation has the opportunity to dig even deeper to fill remaining gaps… Now is the time to build. And given the enormity of this disease state, the federal government must lead the charge.”
Chief among AFA’s recommendations related to the enormous cost borne by families, AFA urges the expansion of publicly-funded “participant-directed” programs that would allow participants to hire family members as paid caregivers; federal tax credits for primary family caregivers; income tax deductions for out-of-pocket costs for long-term care services; and qualifying all people with Alzheimer’s disease, regardless of age, for Medicare benefits and Administration on Aging programs.
And in an effort to address the housing needs for this vulnerable population, AFA is encouraging the U.S. Department of Housing and Urban Development and other stakeholders to develop new, cost-effective transitional housing as a viable alternative to institutionalization.
To further promote timely and accurate diagnosis, AFA calls for initiating an awareness campaign for physicians—similar to the new campaign for the public; promoting the cognitive detection aspect of the Medicare Annual Wellness Visit; and replacing older memory assessment tools currently suggested by the Centers for Medicaid and Medicare Services with newer, more efficient models.
Click here to read the entire “Time to Build” report.
As always, AFA will continue to solicit recommendations from Alzheimer’s disease stakeholders to further refine the plan. Those with further suggestions can contact Eric Sokol, AFA’s vice president of public policy.
Alzheimer's Foundation of America 866.232.8484