National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, January 2015

• M. Ellenbogen  |  01-27-2015
• S. Peschin  |  01-26-2015
• E. Sokol  |  01-22-2015
• M. Lipsitt  |  01-20-2015
• M. Lipsitt  |  01-15-2015

I really hate to write these letters but after watching the meeting yesterday I got so frustrated for two reasons. I will only address commitment to this vision for now. I have made many points in my previous emails. Many of these observations pertained to just a few individuals, but sadly I must address the committee as a whole. I do have to say I have seen some great changes in the approach of many of the members and it seems most are now more aware of what they can do. It was so great to see that yesterday.

While I do not want to single in on one person, someone made a comment yesterday as to why something could not be done. They were putting premature limits on the committee by assessing outcomes as they pertain to their existing job resources. I believe Shari jumped in and intervened that we do need to look at it differently. I do not recall the exact words said but just the overall messaging.

My message to that person is that it is imperative that you separate your role on the committee from your everyday position and self-imposed limitations. You need to ask yourself if you are helping or hurting the outcome of the other members who are trying to work so hard for the new vision for the president and congress.

Until we stop this kind of thinking we cannot do right for those living with dementia.

My mom fell yesterday and shattered/dislocated her shoulder, requiring surgery later today. I am working from home to be available to my mom and stepdad for updates and to help advocate as needed.

So, I won't be there in person to make a public comment. If possible, please read my comment, which is pasted below:

Comment by Sue Peschin, President and CEO, Alliance for Aging Research.

I fully support the suggestion by Sheila Burke to move the time frame for National Plan recommendations back to October to give more time to the process. While HHS works hard to get the slides up, seeing them only two days before they are presented hardly provides enough time for thoughtful deliberation, let alone for council members to vote on recommendations that will potentially affect millions of Americans.

On the Long-term services and supports subcommittee recommendations:
The LTSS recommendations are way too general and provide no benchmarks for which agency should specifically execute which task, what the timing of each task should be, or how much federal and/or private funding may be needed. For example, one of the recommendations states that HHS should support state initiatives for dementia-capable systems by "Providing coordinated Alzheimer's disease related activities across state agencies through an identified state lead entity with adequate funding from Congress." What activities should they coordinate? Though which agencies? What would "adequate funding from Congress" mean? The CMS recommendations in particular have tremendous potential but they are not properly mapped out. For example, what needs to happen for CMS to allow for care planning when the patients isn't there--do we need a new code for providers to have time to counsel/train family or is there an existing code that could be expanded?

Big kudos for #5 that calls on Congress to fund the recommendations and even mentions an amount for one of them.Please add the Lifespan Respite Program to calls for funding the ADSSP and NFCSP programs. Estimates for these can be found in the authorizing language and/or with caregiving groups.

On the advanced dementia work:
This work is very impressive and so important. My only comment here is that this community, knowing what we know about Alzheimer's disease and related dementias, has something very important to say to policymakers about the value of giving people with serious illness the freedom to make more informed choices about their care, and the power to have those choices honored. So, whether we might support The Care Planning Act, introduced by Senators Isakson and Warner, and/or the Advanced Planning and Compassionate Care Act, introduced by Senators Collins and Rockefeller--we should include a bold step here that advanced care planning needs to start sooner, along with the patient's healthcare professionals, and it should be covered by Medicare and Medicaid. A lot of complications of care mentioned here could be avoided if more folks had a plan. So, please consider including a bigger picture policy recommendation to help support all of the other great recommendations you suggest.

On clinical care:
A while back, Helen LaMont asked the question about whether HHS should consider creating a public education campaign about recognizing cognitive impairment and getting checked out. It would be great to see something in the 2015 Plan about engaging CMS and CDC in a campaign to encourage providers to look for it as part of the Wellness Visit, and for families to flag problems. The Wellness visit has been in existence for 4 years now and very little to nothing has been done to take advantage of it and get more folks identified. If we said 50 percent of people with CVD were missed by clinicians each year, heart groups would hit the roof.

On research:
It's wonderful that you included a request. Policymakers want to know how much these dementia diseases cost for research, clinical care, and long-term care. The professional judgment budget happened because feds from NIH would not provide members of Congress with a straight answer about how much was needed.

ASK FOR WHAT YOU NEED. BE BOLD AND BE SPECIFIC. LOTS OF PEOPLE ARE COUNTING ON YOU. THANK YOU FOR WHAT YOU ARE DOING!

No worries if it cannot be read. I hope all goes well with the meeting and that you all stay warm and safe today.

Please see the attached comments from the Alzheimer's Foundation of America to the NAPA Advisory Board. Please let me know if you have questions or need additional information.

NATIONAL PLAN GOALS: TIME TO MAKE THEM HAPPEN

I. NAPA Accomplishments

Since the National Plan to Address Alzheimer's Disease was first released,¹ there has been progress in establishing a cohesive and comprehensive national strategy to fight the illness. Strides have been made in federal agency interaction and coordination, increasing educational materials and outreach and promoting awareness through social and traditional media. National action has spurred movement at the state level and a vast majority of states now have their own plans to coordinate resources and services, often resulting in dynamic care delivery programs that provide better outcomes at lower costs.

Yet, more must - and needs - to be done. Many of the action steps taken have required little resources. While it's a start, these are merely low-hanging fruit and the heavy lifting remains. In addition to increased federal resources, we need better tools are needed to ensure early and accurate diagnosis of dementia. New, coordinated care delivery models that are more efficient and yield better outcomes must be adopted nationally. States need to be more fully engaged and the US needs to further its commitment to international efforts.

As the NAPA Advisory Board continues its work, we must move beyond the edges of policy. While the national Alzheimer's plan established lofty, but achievable goals, sufficient resources are needed if we are to make real progress in eradicating this devastating brain disorder and developing a cure or meaningful treatment by 2025. Further, federal health programs need to remove barriers to access and recognize the growing need for custodial and long-term care services and supports for individuals living with dementia and their family caregivers.

Solutions are readily available to reduce costs of care while promoting better outcomes for individuals with dementia and their family caregivers. The national Alzheimer's plan already contains a number of such recommendations, which, if implemented could save significant resources. In addition national stakeholders, including the Alzheimer's Foundation of America (AFA), have contributed constructive comments, ideas and proposals for the NAPA Advisory Board to consider when developing their annual report for HHS.²

AFA would like to build upon these past proposals and offer the following new recommendations to further the process and ensure implementation of the national Alzheimer's plan on a credible pathway toward achieving its core objectives. These new proposals, moreover, are not costly, can be quickly implemented and will have an immediate, positive impact in achieving the objectives of the national Alzheimer's plan. They include:

• Calling on CMS to develop and execute a timeline in which they will nationally adopt and broadly implement innovative care delivery models.
• Encouraging states to develop their own Alzheimer's plans and increase states' involvement in the national Alzheimer's plan.
• Promoting and expanding opportunities for cognitive memory screening.
• Increasing the federal commitment to international efforts fighting Alzheimer's disease.
• Increasing resources for Alzheimer's disease research and caregiver supports and services.

II. AFA Recommendations

Adopting innovative care delivery models, expanding transitional care programs, and expanding caregiver supports can reduce hospitalizations, decrease emergency room visits and delay costly nursing home placement.

As outlined in AFA's "Cost of Care: Quantifying Care-Centered Provisions of the 'National Plan to Address Alzheimer's Disease" report,³ recommendations such as medical homes and enhanced caregiver training and supports, will provide significant cost savings--more than $110 billion during a 10-year period--while promoting better health outcomes for individuals with Alzheimer's disease, and improving quality of life for their caregivers.

An independent study of a Minnesota dementia caregiver program found that, if fully implemented, the program would save the state nearly $1 billion over 15 years,⁴ further underscoring the findings of AFA's "Cost of Care" report.

In the coming year, CMS is expected to release data from demonstration projects, including several involving dementia care delivery models. This should provide the necessary evidence for federal health programs to move ahead with alacrity to implement such programs nationwide. As demonstrated in Minnesota, small investments in supports that provide caregiver tools and strategies yields major savings and better outcomes.

AFA, therefore, urges the NAPA Advisory Board to recommend that CMS develop and execute a timeline in which they will nationally adopt and broadly implement the innovative care models and enhanced caregiver support recommendations that are included in the national Alzheimer's plan.

In an effort to help advance the goals of the national Alzheimer's plan at the state level, the National Alliance for Caregiving and AFA released a white paper that examines the scope of the Alzheimer's crisis, and the need for wide-scale implementation of state plans that address supportive services specific to state localities.⁵ The report offers six key recommendations, applicable to both new and existing state plans:

• Establish and maintain a task force of Alzheimer's disease stakeholders, including government officials, community groups, individuals with dementia, and family caregivers.
• Assess the ability of the state Alzheimer's disease community to support diagnosed individuals and their families.
• Develop a state plan for Alzheimer's disease that includes goals specific to the state population, and outlines measures to track progress.
• Keep stakeholders engaged in the design, implementation and evaluation of the plan.
• Recognize that state plans are "living documents," and modify them, as appropriate, over time.
• Learn from the successes and challenges of other states and the national plan.⁶

States are the often called the laboratory of democracy⁷ and their freedom to innovate, customize and target policy can produce effective models, some of which can be replicated on both state and federal levels. Yet, there is no process or forum to share successes, discuss failures and identify gaps in policy. There needs to be greater communication, not only between states, but between states and the NAPA Advisory Board so federal officials can be keyed into valuable input from their efforts.

AFA urges further encouragement of states to develop their own plans, increase states' involvement with the NAPA Advisory Board and establish a forum within the National Governors Association or National Council on State Legislatures for states to share best practices and successful recommendations with their peers.

Misdiagnosis of Alzheimer's disease and related dementias is already rampant, leading to unnecessary costs and, most importantly, risks to individuals. Memory screening is necessary, therefore to ensure a timely and accurate diagnosis of Alzheimer's disease. With early detection, individuals with dementia can receive available therapy earlier in the disease progression when most available treatments for Alzheimer's disease are most helpful. Early identification allows optimal therapy with available and emerging medications.

The Food and Drug Administration (FDA), moreover, is focusing more clinical research on individuals earlier in the disease process. AFA can appreciate the difficulty in developing meaningful diagnostic criteria for preclinical Alzheimer's disease. Yet, cognitive screening can help identify pre-symptomatic individuals and others with mild cognitive impairment who can populate these necessary and vital drug trials that give hope to millions with dementia.

Despite these advantages, the U.S. Preventive Services Task Force (USPSTF) has failed to recognize cognitive screening as necessary for older adults.⁸ While USPSTF found adequate evidence that some screening tools have sufficiently high sensitivity and specificity to be clinically useful in identifying dementia, they found inadequate direct evidence on the benefits and harms of screening for cognitive impairment and of non-pharmacologic interventions.⁹

Memory screening is gaining ground thanks to increased awareness about Alzheimer's disease, as well as the Medicare Annual Wellness Visit, which includes a cognitive assessment.¹⁰ In addition, during AFA's 2014 National Memory Screening Day this past November, more than 6,000 sites across the country provided free confidential screenings, as well as education on good brain health, to tens of thousands of participants.

AFA urges the NAPA Advisory Board to further promote and expand opportunities for memory screening. The NAPA Advisory Board should call for more research on cognitive screening and its impact on individual care choices and identify new technologies that can test and track cognitive functioning.

There has been considerable movement in the worldwide effort to fight Alzheimer's disease. Since the G8 Summit held in London in late 2013, there has been a more coordinated international effort in combating dementia. The G-7 has committed to identifying a cure or a disease modifying therapy by 2025 and to increase funding for dementia research.¹¹ To this end, international policy makers have met at various legacy meetings throughout 2014 (with more scheduled in 2015, including a meeting in February at NIH). In addition, Dr. Dennis Gillings, consultant to the pharmaceutical industry and founder of a drug trial, has been appointed by the UK Prime Minister as the World Dementia Envoy.¹²

As a leader in Alzheimer's disease research, the US needs to continue its commitment to these international organizations. The sharing of research data, best practices and study results will speed drug development and help achieve the shared 2025 goal. The NAPA Advisory Board acknowledges this need and, in the past year, has heard from international Alzheimer's advocates and has been briefed on worldwide efforts.

It is imperative, therefore, that the 2015 NAPA Advisory Board recommendations include greater commitment to these international efforts. In addition, representatives of the State Department be invited to join the NAPA Advisory Board.

Without adequate resources, getting to the 2025 NAPA goal will be arduous and success will be put in doubt. Investment in promising research is imperative to meet these ambitious, yet achievable goals. Despite the need, spending on Alzheimer's disease research lags far behind research resources spent on other major diseases. In FY 2013, the National Institutes for Health (NIH) spent approximately $504 million for Alzheimer's disease, while $5.2 billion went to cancer research; $2.9 billion for HIV/AIDS; $2 billion for cardiovascular disease; $1.2 billion for heart disease; and more than $1 billion for diabetes.¹³ Without the same commitment for Alzheimer's disease, costs will continue to rise at unprecedented rates, promising research will remain unfunded, and hope will be diminished for the millions living with dementia.

The NAPA Advisory Board needs to recommend Congress "double down" on Alzheimer's disease research to $1 billion in FY'16 and work with appropriating committees in Congress on a pathway to get Alzheimer's disease research funding at $2 billion by the end of the current decade.

III. Conclusion

These are challenging times, and limited resources call for creative solutions. Yet, we cannot simply maintain the status quo. Investment in research and caregiving services is the only way to ensure that we, as a nation, can overcome the growing human and fiscal crisis that is Alzheimer's disease. An international, comprehensive and coordinated effort is needed to combat the growing worldwide crisis of dementia impacting individuals and families regardless of race, creed, color or national origin.

The recent worldwide effort against Ebola can be instructive in developing a strategy that can contain and ultimately defeat the disease. In the case of Ebola, after an initial period of unpreparedness, economically advantaged nations took action and developed an international strategy to control the outbreak and develop a vaccine. For its part, the US will spend $5.2 billion in FY'15 alone on care, prevention and development of a viable vaccine to fight Ebola. While it is far from certain whether this current Ebola outbreak can be contained; the international commitment to adequately respond to the crisis, with proper initial resources, cannot be questioned.

Unlike Ebola, however, we know we are facing a growing worldwide dementia crisis and its impact on society is arguably greater. The national Alzheimer's plan sets a stage and provides guideposts and impactful endpoints. Yet, the missing piece is the necessary investment that can change trajectory of this disease and transform outcomes. Progress has already been made in several areas of the plan and some modest goals have been completed, yet we are nowhere near the ultimate prize of finding a treatment or cure, and our time to meet the 2025 goal is ticking away. Now is our time to make it happen, or chances are it never will.

NOTES

1. See, http://aspe.hhs.gov/daltcp/napa/natlplan.shtml. As required by statute, the plan has been annually updated in 2013 and 2014.
2. See, AFA publications: The Time to Act is Now (http://www.alzfdn.org/Publications/TheTimeToActIsNow.pdf) and Time to Build (http://alzfdn.org/Publications/TimeToBuild_final.pdf).
3. See, http://www.alzfdn.org/documents/Quantifying-Care-Centered-Provisions-of-the-National-Plan-to-Address-Alzheimers-Disease.pdf.
4. K. Long, et. al., Estimating The Potential Cost Savings From The New York University Caregiver Intervention In Minnesota, Health Affairs, vol. 33 no. 4 596-604 (April 2014) (http://content.healthaffairs.org/content/33/4/596.full?ijkey=81Sa5vdZNrEvc&keytype=ref&siteid=healthaff).
5. From Plan to Practice: Implementing the National Alzheimer's Plan in Your State (July 2014) (http://www.alzfdn.org/documents/AlzheimersStatePlans-7-21-14.pdf).
6. Ibid.
7. U.S. Supreme Court Justice Louis Brandeis in New State Ice Co. v. Liebmann to describe how a "state may, if its citizens choose, serve as a laboratory; and try novel social and economic experiments without risk to the rest of the country."
8. Final Recommendation Statement Cognitive Impairment in Older Adults: Screening (http://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/cognitive-impairment-in-older-adults-screening#consider).
9. Ibid.
10. As an example, over 85,000 individuals participated in AFA's 2012 National Memory Screening Day. Over 800,000 Medicare beneficiaries took the Annual Wellness Visit, which includes cognitive screening, as of June, 2011. California Health Advocates, Understanding Medicare's Annual Wellness Visit: Frequently Asked Questions (http://www.cahealthadvocates.org/news/basics/2011/wellness.html).
11. G8 Dementia Summit Declaration (issued Dec. 11, 2013) (http://www.gov.uk/government/publications/g8-dementia-summit-agreements/g8-dementia-summit-declaration).
12. See, http://dementiachallenge.dh.gov.uk/2014/02/28/dennis-gillings-appointed-world-dementia-envoy/.
13. See, Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) (http://report.nih.gov/categorical_spending.aspx).

I will be reading the following public comment out, but can you add it to the archives?

Mary, 57 year of age, has been my domestic partner for the past 9 years. In October of 2012, Mary was diagnosed with Posterior Cortical Atrophy (PCA), a relatively-rare variant of AD.

PCA is a progressive degenerative condition involving the loss and dysfunction of brain cells particularly at the back (posterior) of the brain, where visual processing takes place. In the vast majority of cases, this loss of brain cells is associated with the same pathological brain changes seen in typical Alzheimer's disease, but in addition to memory issues, PCA affects how the brain interprets what the eye sees. It also impacts the ability to access the right words from the brain, making speech difficult.

While Mary's eyes are anatomically-normal, her response to what the eye sees is severely degraded. As examples, Mary can see a chair, but can't figure out how to get into it. She can see a staircase, but has difficulty figuring out how to go up or down. She can see objects in her path but still trips over them. She is effectively becoming "brain-blind"! This horrendous disease has progressed quickly to a point where she is no longer able to care for herself - she needs assistance in dressing, bathing, toileting, and most other ADLs.

Prior to the onset of early symptoms, Mary owned a successful yoga and health business in the Allentown ,PA area for over 16-years. She also ran Yoga and Health programs for the faculty at Lehigh University . While running her business, and as a single mom, she raised her daughter - now 27 and a successful engineer.

When Mary was in her early 50's, she decided to expand her knowledge of healthcare, and pursued a Master of Science Degree in Counseling Psychology. She earned this degree from the Pennsylvania College of Osteopathic Medicine with top honors, and this was only 5 years ago! Today, Mary can barely read!

Next month, Mary will be entering a residence for people with dementias. Sadly, I am no longer able to provide her the level and quality of care she needs and deserves, but will continue to be her advocate and oversee her well-being.

Of major concern to us is the financial component of her continuing care. I was appalled to learn of congress's recent plans to cut Medicare Disability benefits, apparently as a response to significant fraud in the system. Why not address the fraud issue separately, and allow those who really need the benefit to continue receiving it? I have some ideas on how this could be accomplished, such as requiring that the recipient has a disease that is incurable and/or terminal, and require validation from at least 3 physicians. I believe this alone would eliminate much of the fraud. I would gladly work with your committees on this subject as appropriate.

Thank you for your consideration, and the work you are doing on behalf of those 5+ million people in the US - like Mary - suffering from ADRD.

During your mid-morning session of public comments, I am requesting to offer comments relating to my domestic partner, Mary Rosenberger.

Five years ago, shortly after Mary (at age 52) earned her Masters degree in Counseling Psychology, she was diagnosed with a rare variant of Alzheimer's Disease, called Posterior Cortical Atrophy. This disease not only affects memory and cognition, but visual and auditory processing. When she hears or sees something, her brain isn't able to respond...so simple tasks like walking up and down steps, getting into or out of a chair, putting clothes on, etc, etc, have become impossible, for her to do without assistance. Sadly, her disease has progressed very quickly...to a point where she will soon have to move to a residence that can provide the 24/7 care she needs.

Mary is on social security disability, and it is distressing to hear that congress is looking at cutting back these benefits. This would be extremely troubling for Mary, as she is counting on this benefit to cover the high cost of her care.

Unfortunately, we will not be able to attend the meeting in person. Might I be able to present using skype or facetime, or participate online in any other way?

Thank you for your consideration.