Follow up on Blount Alzheimer’s Center Cuts.
I was devastated by the cutbacks at the Blount Cenetr for Alzheimer’s research. There is no cure for for my DH, but I know the Center is working so that my children and grandchildren will be spared this vile disease. Not expecting much, I contacted my congressperson.
A few days later, my congressperson phoned me! He offered his sympathy and texted me a copy of a letter he had sent protesting the NIH cuts. He also told me the situation was not good, but that he would continue to work for Alzheimer’s patients and their caregivers. He also told me to let people know how important it is to reach out to other congresspeople to press them. I do this now every day, working my way through my state representatives and everyone on the health committees. He also tweeted bout the cuts.
I write to let people.know some politicians offer kindness, compassion and action, but we have to reach out to them. There is no cavalry coming. We must advocate for research ourselves. And thank you Congressman Josh Riley. You showed me people do listen and do care.
Comments
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I was also greatly saddened with news reports that the Roy Blunt Center for Alzheimer’s and Related Dementias (referred to by the acronym CARD) was recently ordered to reduce 10% of their workforce.
I had posted much of the following in another area in AlzConnected. Some of the responses were that this isn't a political forum. I understand this is not a political arena. However, when I was diagnosed with AD, I spent much time investigating my treatment options, including participating in a clinical trial combining an anti-tau drug with Leqembi. It turned out the trial was not enrolling participants at that time, so I elected to start on Leqembi. For my personal AD journey, it is critically important to maintain existing research staffing & funding into new drugs to treat AD, such that I may actually be able to beat the disease instead of my brain wasting away into nothing. So I think it is entirely appropriate to be posting things like this within this forum. This forum is sponsored by the Alzheimer's Association, which issued a press release in support of CARD when it was first opened.
The irony of the official full name for CARD doesn't escape me, as Roy Blunt was a Republican Senator for Missouri, who pushed hard for the funding for CARD. Here is a quote from Dr. Tabak who was acting NIH director at the dedication ceremony for CARD: "The CARD fills gaps that exist across basic science, translational, clinical and data science portfolios of Alzheimer’s and related dementias research. We are not here to compete with existing programs. We are here to compliment research through open science, training and collaboration."CARD was formed in 2022 as a collaboration between the National Institute on Aging (NIA) and National Institute of Neurological Disorders and Stroke (NINDS), to support basic and clinical research on AD.
CARD is currently lead by Dr. Andrew Singleton. He was born and educated in the UK, with his postdoc work at the Mayo Clinic in Jacksonville, Florida. Singleton has received numerous awards in his career, including an NIH Distinguished Investigator and the American Academy of Neurology Movement Disorders Award.
Singleton is apparently nearing his retirement, and Kendall Van Keuren-Jensen had been tapped to be the acting director of CARD when Singleton departed. Per her LinkedIn profile, Keuren-Jansen was the Senior Scientist/Lead for Neurogenomics and Diagnostics at the NIH from Jan 2024 to present. She has been called a leading researcher in the field of AD, and was specifically recruited to join CARD as a replacement for Singleton.
Recently, 10% of the staff at CARD was fired, including Keuren-Jensen. Singleton wrote in an e-mail that "This loss will have a profound impact on the work we do to understand and treat disease.”
A CARD employee stated "It’s devastating for us—and for anyone who is worried about getting Alzheimer’s, or has already gotten Alzheimer’s, and is hoping there will be better treatments in the future. It’s a huge blow."
Michael Greicius, a neurologist at Stanford University, had this to say about the staff firings at CARD:
"CARD has developed infrastructure and a brain trust that’s really unmatched in the world, in terms of its advances in Alzheimer’s and Parkinson’s. Weakening CARD will set Alzheimer’s and Parkinson’s research back substantially.”
Below is a link to the Alzheimer's Association statement regarding the reductions in staff and funding at NIH. Similar to the request from upstateAnn, the request is to make your voice heard with your representative.
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I looked it up and there were 10 people out of 100 cut. Research was not cut. Only administrative were affected.. There was no director because the former director was investigated for fraud. There was an acting director who resigned.
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Please list your sources.
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Sorry some of the following links are not clickable, the software for this website for some reason doesn't like some of the links
Here is my first source:
https://card.nih.gov/about-card/meet-teamIf you scroll down a bit, you will see the Director of CARD was, and still is, Andrew Singleton, PhD. 10% of the people on this list were fired. I'm curious as to how anybody can label any of these individuals as "administrative." As a former civil servant with NASA, I see two classes of individuals in the CARD staffing list: civil servants, and contractors. I presume the 10% reduction was fully composed of civil servants who were in their probationary period, as that has been the standard practice for DOGE. Contractor positions are eliminated when funding has been cut for those positions. As of yet, Congress has not reduced the budgets for any federal organizations, hence my presumption that zero contractor positions have been reduced.
One of the persons fired was Kendall Van Keuren-Jensen, Senior Scientist, Lead for Neurogenomics and Diagnostics Unit, NIA. Kendall is included in the list towards the bottom (the website has presumably not yet been updated per the recent cuts). Below is a link to her site on LinkedIn. Kendall has apparently not updated her LinkedIn page in a long while, and the site still shows she is an employee at NIH. Kendall had recently been encouraged to transfer into CARD to take Andrew Singleton's position as Director, as Andrew was planning to retire.https://www.linkedin.com/in/kendallvankeurenjensen/
In September 2024, NIH fired Elizer Masliah, MD, "due to falsification and/or fabrication involving re-use and relabel of figure panels representing different experimental results in two publications. Masliah joined NIH in the summer of 2016 as director of the Division of Neuroscience at the National Institute on Aging (NIA). At the time of his firing, Masliah was not serving in the capacity of director of the NIA Division of Neuroscience. This is all separate and distinct from CARD.
A couple of other interesting linkshttps://card.nih.gov/news-events/card-news/roy-blunt-center-alzheimers-disease-and-related-dementias-research
https://alzimpact.org/Alzheimer%27s-Association-Honors-Senator-Roy-Blunt3 -
Dear SCiane. With all due respect, scientists were fired. I am a reference librarian and I consulted a,lot of sources given the news silos we live in. Good luck.
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For anyone interested in what comes next, I suggest you read the memo from Russell Vought, Director, Office of Management and Budget, US Office of Personnel Management, dated Feb 26, 2025. The letter is available online at the opm.gov official US government website at the link below.
I will quote just a few lines from the beginning of the memo:
"The federal government is costly, inefficient, and deeply in debt. At the same time, it is not producing results for the American public. Instead, tax dollars are being siphoned off to fund unproductive and unnecessary programs that benefit radical interest groups while hurting hardworking American citizens. The American people registered their verdict on the bloated, corrupt federal bureaucracy on November 5, 2024 by voting for President Trump and his promise to sweepingly reform the federal government."
The memo calls for all US government agencies to submit Agency Reorganization Plans to the Office of Management and Budget by March 13, 2025. These plans are to include a "significant reduction in the number of full-time equivalent positions by eliminating positions that are not required" and "maximally reduce the use of outside consultants and contractors."
I guess those of us supporting Alzheimer's Research are by Russell's definition part of a "radical interest group." :)
To help 'connect the dots' for those not well versed in arcane federal budgeting and operations, there are basically three types of expenses: costs for so-called full-time equivalent employees (i.e. regular government employees), support service contractors working side-by-side with the civil servants, and then costs for contracts with private companies to develop specific products or services.
The first round of cuts experienced across the the government were firing recently hired civil servants who were still on probationary status. The next round is the Office of Management and Budget directing all US government agencies to prepare for a significant reduction in force (i.e. firing more civil servants) and cutting back on consultants and contractors (see referenced memo above).
In comparison to this cost cutting exercise, I looked at the budget proposal for FY25 from the prior administration for the National Institute for Aging. For those not familiar with the gov't organization for Alzheimer's Research, the Roy Blunt Center for Alzheimer's Disease and Related Dementias (CARD for short) is funded primarily from the National Institute for Aging (NIA), which is part of the National Institute of Health (NIH), which is part of the huge Department of Health and Human Services which includes Medicare, Medicaid, Centers for Disease Control & Prevention, Food & Drug Administration, and a bunch of other orgs you have probably never heard of.
Instead of reducing the CARD budget, the prior administration proposed an increase of 14.8% for the Intermural Research Program, which was to provide "expanded staff support for the new CARD".
In reviewing the CARD staffing per the CARD website included in a previous post, I count 96 people who used to work at CARD, with 57 civil servants and 39 contractors. Examples of positions filled by contractors include the Lead for Collaborative Research (Bachelors in Cognitive Science, Masters in Data Science), the Lead of Automated Cell Culture Expert Group (who has a PhD), a Senior Biomedical Data Scientist and Senior Proteomcis Data Specialist (who has a PhD in Oncology and Cancer Biology). In other words, these aren't people who are answering the telephone.
I presume CARD is now down to 85-ish staff after the first round of cuts. If the government proceeds with a Reduction in Force, then the civil service complement at CARD will be reduced. If the gov't cuts contractor funding, then CARD contractors will be fired.
For those unfamiliar with a gov't Reduction in Force (RIF), it is a very cumbersome and complex process. Per the OPM rules, the gov't cannot just fire specific civil servants. Rather, the government eliminates the position formerly held by the civil servant. The civil servant who was RIFed has bumping rights, if they have the qualifications to take over the job of anybody else in the organization in the same competitive area. So if Fred's job is eliminated but Fred can do the work that Sally normally does, Fred can bump Sally (if they are in the same geographical area). If Sally can do the job that Alice does, then Sally can bump Alice. And so on. There are special rules for those who are veterans regarding bumping, and rules regarding length of service and performance ratings. It is all very complicated, and not the best for employee moral. As you might guess, there are several recently published Youtube videos about Federal RIFs & bumping rights.https://www.nia.nih.gov/sites/default/files/2024-03/nia-fy25-congressional-justification-budget.pdf See page number NIA-29 (page 31 of the pdf) for info about CARD.
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While I am saddened by cuts to medical research, I am more frightened by cuts to Medicaid. Medicaid pays for memory care for dementia patients without resources as well as healthcare for impoverished children.
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LBC83, upstateAnn, good specific info, thank you.
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This is getting to be a daily update :)
Yesterday, several news sites reported that the Office of Personnel and Management (OPM) retroactively edited their guidance to agencies to reflect that they were not mandating any specific firing actions. This was in response to a court ruling that OPM illegally ordered agencies to fire more than 25,000 employees in their probationary periods across the government. The court ruling was limited to the Department of Defense, National Park Service, Bureau of Land Management, Small Business Administration, and Fish & Wildlife Service. However, at least one agency - the National Science Foundation - has re-hired about half of those it fired, citing the court ruling. One wonders how Robert Kennedy Jr, Secretary of the US Department of Health & Human Services, will respond to the court ruling, and how this might impact the recent firings of presumed probationary employees at the Center for Alzheimer's Disease and Related Dementias.1 -
I disagree..please leave the thread up but anyone posting needs to cite sources.
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Yesterday, the Alzheimer's Association (the organization sponsoring this forum) issued a press release on their website regarding a Senate confirmation hearing for the new NIH director. Senators from both political parties expressed support for Alzheimer's research.
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Midge, I can’t imagine how cuts to Medicaid will fly with the assisted care facilities. These are big businesses that must have large lobbying groups. I’m new to it all, but it doesn’t seem like they would take kindly to losing funding for, what? Tens of thousands of patients in their facilities? I’m kind of surprised we aren’t hearing from them.
Cecil, yes. It is political and therefore it impacts the lives of many people here. Taking the post down will not make the concerns go away. If you are uncomfortable with the content of a post, you can always avoid it. The bottom line is that Medicaid is inextricably intertwined with care for many families dealing with AD.6 -
I agree it's political and fueled by anxiety resulting from an agenda of a specific political party and propaganda partners in the media. It lacks any authoritative proof of cuts. It's simply political hyperventilating. Take it down.
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I'm honestly very curious, are you suggesting that my posts should be deleted? Not that it should matter, but I am a registered Republican. I am a conservative by nature, and I regularly read the Wall Street Journal. My posts have references to Press Releases from the Alzheimer's Association on the topic of cuts impacting Alzheimer's Research by the US Government. As a reminder, the Alzheimer's Association is the sponsor of this forum.
I also happened to have Alzheimer's Disease. I am currently taking Leqembi, in an attempt to slow the progression of my AD. I had been hoping that on-going clinical trials pairing anti-tau drugs and Leqembi might actually stop the progression of AD, in time such that I could benefit from the anti-tau drugs if/when they receive FDA approval. I also have been hoping that more advanced drugs targeting AD in earlier stages of the disease might some day cure AD (that is a hope for the next generation). My hopes have been diminished by the recent reductions in staffing at the Roy Blunt Center for Alzheimer's Disease and Related Dementia's (CARD). In our splintered news media, I've noticed these reductions have not been reported in right-leaning news sources. News sources that used to be considered mainstream and neither left- or right-leaning, such as ABC News, have published stories where they interviewed people working at CARD who described the impact of the staff firings.
I have also posted links to the proposed FY25 budget from the prior administration, which included an increase in funding for CARD to hire new staff. This was in support of the previous administrations desire to provide a focus on AD research within the National Institute of Health. This is factual information, not filtered by the news media. It is left for informed voters to make their opinions known to their Congressional representatives, at least that is how I was taught how our democracy is supposed to operate.-1 -
@midge333, Medicaid rules are state specific. In my state, Medicaid covers nursing home care for those who meet the guidelines; however, it does not cover Assisted Living or Memory Care.
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I, for one, greatly appreciate your posts on this. You bring facts and real sources as well as on-the-ground expert experience with federal funding. I also find cries of “take it down because I disagree with you” to be incredibly distasteful.
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I also greatly appreciate your posts and I thank you for them.
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Please do not remove posts on Alzheimer's research and funding. Knowing the facts is vital for all of us!
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I appreciate this post immensely. It’s a very important topic affecting many of us and it’s factually accurate. I am in California in a very conservative rural area. Our one facility for the elderly has already voiced their concerns that they would face closure should these cuts happen.
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In my personal quest to understand the impact of the recent cutbacks in staffing at the National Institute of Health Center for Alzheimer's and Related Dementias (CARD), I took a deep dive of the first five individuals listed on the CARD website (card.nih.gov) who are not Contractors and not IRTAs (more on that acronym shortly). The rest should be civil servants (i.e. what people most often think of as regular, government employees).
Here are the dates when these first 5 joined CARD, their job title (where available), and their education:
1-Joined CARD in 2022, PhD in Molecular Genetics (2016), Doctor of Pharmacy (2011)2-Joined CARD in Jan 2024, perhaps recently fired, PhD Pharmacology
3-Joined CARD in Jun 2023, Scientific Advisor to the CARD Director, PhD in Neuroscience
4-Joined CARD in Aug 2023, Biomedical Data Scientist, BS in Bioinformatics and Computational Biology, Master's Degree in Data Science
5-Joined CARD in 2002, Senior Investigator, PhD in Cell biology
Some have indicated the staffing cuts are limited to administrative staff or overhead. Based on their education, I wouldn't define these people as examples of administrative staff or overhead. There were 57 civil servants at CARD, and I only sampled the first 5 in the directory (in alphabetical order by name). So perhaps there are a bunch of administrative aids lower in the alphabet. But I doubt that, I think it is fair to say that CARD wasn't exactly overflowing with administrative folks.
While I'm posting, I will include a link to an article I read today on BioPharmaDive.com. I subscribed to this website primarily to read about Leqembi / Kisunla. For example, below is an older link about a story they had on Leqembi.
The recent article is primarily about a Senate hearing yesterday for Marty Makary, the nominee to run the FDA. Republican Senator Susan Collins (R-Maine), "questioned the decision to lay off 'probationary' employees, specifically, because of the agency's need to bring new scientists and researchers in to replace older ones as they retire."
Finally, I noted above that some of the CARD staff are part of the Intramural Research Training Award (IRTA). Per the CARD website, CARD offers training and practical research opportunities through NIH's Intramural Research Training Award for individuals who have earned a bachelor's degree or doctoral degree. Postbaccalaureate Fellows who are planning to apply to graduate or professional school can spend 1-2 years at CARD conducting full-time biomedical research.4 -
These posts are very very useful and not political. Advocating for my husband and children who might get the disease is my duty. None of us should, in my opinion, ever hesitate to contact any politician, of any party, about funding for medical research. Keep posts coming. We need to be apprised of this. Remember, without research, cancer and heart disease would now have far worse outcomes.
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These posts and the sources cited are useful and credible. It’s unfortunate that today’s politics frequently results in each side not listening to the other, and many people not willing to hold the party they voted for accountable (on both sides). To do great things as a country, we need to sustain investments in research and manufacturing over the long term. Getting to the moon in the 60’s was the result of continuous efforts through three administrations and both parties. All of us here, and future generations in our families and broader communities , deserve a similar effort now to keep the best and brightest minds funded and focused on development of improved diagnostics and therapeutics to mitigate the impact of dementia. The societal benefits will be huge if we can change the trajectory of a disease that is forecast to double to more than 10M people in the near future.
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Where is the money? You have no proof of cuts to meaningful research. Without that you're fueling the anxiety of those who come here seeking help, solutions, support, etc. An alert to an important, documented spending cut would be useful. But speculation about the impact of cuts to a bloated beauracracy is not helpful.
I take back suggesting your posts should be taken down. On reflection they are apparently helpful to some. But I was looking for a specific proposed cut to a promising research project. So far nothing of impact.
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I accept your criticism. As the new administration has not released data on exactly which presumably probationary employees were fired at CARD, I think you would agree it is somewhat difficult for me, as an outsider, to estimate the impact of the staffing reductions on Alzheimer's research. I presumed the quote from a Stanford neurologist indicating that the CARD brain trust is "unmatched in the world" and that "Weakening CARD will set Alzheimer’s and Parkinson’s research back substantially” would be sufficient. But I can understand how others might want further information.
I find it unfortunate that well-respected journalists have not further pursued this story. I understand they are all presumably overwhelmed with the deluge of changes, with a staffing reduction at a very small organization like CARD not high on the priority list.
Also, this entire thread is presumably moot as this point, as I'm guessing that the probationary CARD employees who were fired have been recalled, with the court rulings indicating that it was illegal for other agencies to fire all probationary employees (they should have only fired probationary employees with poor performance reports, and I obviously support firing people who are underperforming). This court ruling was limited to specific federal agencies, but the administration has seemingly walked-back the firing of probationary employees across the federal government.An organization called "UsAgainstAlzheimer's" has a press release on the CARD reductions. The org was co-founded by George Vradenburg in 2010. He has served in senior executive and legal positions at CBS, FOX, and AOL/Time Warner.
Here is what they had to say about the CARD staffing reductions. It is similar to the press release from the Alzheimer's Association.2 -
I also appreciate the posts and the links to where the information was discovered. This is a topic that matters to all of us who post here and having as much information as possible is never a “political” issue. And, considering how rapidly some situations are changing, we all need to stay on top of it.
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I am so happy to have this group where I can read how other caregivers are coping. That being said, I am gravely disappointed in politics being brought into it. I think we should all have the information shared about the research but why can't it just be information, not political. That is not why I am here…
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This was informational…. Advocating for research is part of our obligation to our loved ones.
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bjt84 asked about "specific proposed cuts to a promising research project." I thought of that comment when I read in my local paper on Sunday an AP article about proposed cuts at the Veterans Administration. The article quoted the VA Press Secretary as stating "Every dollar we spend on wasteful contracts, non-mission-critical or duplicative activities is one less dollar we can spend on Veterans, and given that choice, we will always side with the Veterans."
Who can argue against that strategy? Seemingly no rationale person would want to waste funds. That lead me to look into exactly what was in the prior administration's proposed budget for FY25. For those not versed in the arcane world of federal budgets, FY25 runs from Oct 1, 2024 - Sept 30, 2025. The prior administration proposed a budget for FY25, but Congress never approved that budget. Instead, Congress has funded so-called "Continuing Resolutions", which basically direct the government to continue on with the FY24 funding levels. This is perfectly fine for orgs that don't change much from year to year, but is a big mess for agencies that were winding down one program but wanting to start another new program. With a Continuing Resolution, by definition, it is ok to continue on with old stuff, but starting new stuff is prohibited. Thus, by definition, it is ok to continue to do stuff that you were originally planning to stop doing, while you can't start doing new stuff. This is inherently a dumb way to fund the government, but that is an entirely different thread.
In 2011, Congress passed the National Alzheimer's Project Act (NAPA). According to wikipedia, NAPA was developed from recommendations from a 2009 taskforce, and was authored by Senator Susan Collins (R-ME) and Senator Evan Bayh (D-IN). This law called for a coordinated national plan to accelerate research and improve care and services for people living with Alzheimer's and related dementias, and their families. In 2024, the NAPA Authorization Act was signed into law to continue coordination of federal planning, programs, and other efforts to address Alzheimer's and related dementias through 2035.
The NAPA law includes a requirement for NIH to develop a "Professional Judgment Budget for Alzheimer's Disease and Related Dementias" each fiscal year. A link to the FY25 NIH Professional Judgment Budget is below.
The 35-page document "outlines a funding proposal as well as examples of the future research efforts that can be pursued with additional investment in FY25." Here are a few snippets from the document:
"Although more work is needed, we are closer than ever before to meeting the first goal of the National Plan to Address Alzheimer's Disease: to prevent and effectively treat Alzheimer's and related dementias. These efforts are only possible through meaningful collaboration among the research community, industry, and the broader public."
"Research has revealed that these diseases are profoundly complex, and individuals are often living with 'mixed' dementia, a condition in which more than one dementia pathology is observed to occur simultaneously in the brain. For example, buildups of amyloid and tau proteins in the brain, generally associated with Alzheimer's disease, often co-occur with blood vessel damage typical of vascular dementia. These findings underscore the importance of applying a personalized medicine approach to treating dementia, where everyone receives the treatment or combination of treatments that is best for them. Essential to precision medicine is a dedication to ensuring clinical research is inclusive so that results of clinical trials are applicable to all populations, especially those most at risk for dementia."
"This budget proposal outlines the additional funding needed in FY 2025 to advance NIH-supported research toward achieving the goals outlined by the National Plan. The professional budget estimate includes $318M in additional resources for new research, with the overall resources needed totaling $4.07B."
The $4.07B budget proposal was allocated as follows: 26% ($131M) for Translational Research and Clinical Interventions, 20% ($101M) for Research Resources, 16% ($82M for Epidemiology / Population Studies), 14% ($72M) for Diagnosis, Assessment, and Disease Monitoring, 9% ($45M) for Alzheimer's Related Dementias, 7% ($35M) for Disease Mechanisms, 6% ($28M) for Dementia Care and Impact of Disease, and 2% ($10M) for Staff Needs, Support, and Misc.
The CARD budget seems to fall under the category Research Resources. The budget proposal notes that research teams are now generating new data and insights faster than ever before using computational tools including Artificial Intelligence and Machine Learning. One example cited in the budget proposal is researchers at CARD using AI/ML "to develop scalable and openly accessible tools to help researchers understand and analyze complex genomic datasets."
Again, all of this is somewhat moot, as the FY25 budget proposed by the previous administration isn't going anywhere. But this does provide some detail into exactly how the gov't is currently spending money on Alzheimer's research & other activities.https://www.nia.nih.gov/sites/default/files/2023-07/fy25_alzheimers_bypassbudget.pdf
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I typically don't get surprised (in a good way) by U.S. government budget documents, but today was an exception. My previous post referred to a NAPA law calling for a "Professional Judgment Budget." I had never previously heard of such a budget. Today I was reading Section 42 of the United States Code, Section 11225 (The National Alzheimer's Project). If you aren't familiar with the U.S. Code, this is the official record of all laws of the United States, as passed by the U.S. Congress.
The NAPA law orders the Secretary of the Health and Human Services to establish in the Office of the Secretary of Health and Human Services the National Alzheimer's Project. The Secretary also shall create and maintain an integrated national plan to overcome Alzheimer's; accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer's; and four other things (I don't want to spend all evening typing in the act).
The Secretary also has to carry out an annual assessment of the Nation's progress, across public and private sectors, in preparing for the escalating burden of Alzheimer's.
The Secretary is directed to create a pretty big Advisory Council, composed of one expert from each of the following federal government agencies: CDC, Department of Aging, Center for Medicare/Medicaid, Indian Health Service , NIH, Surgeon General, National Science Foundation, VA, FDA, Justice Department, FEMA, Social Security Administration, plus 2 others as determined by the Secretary with at least 1 of the 2 having expertise in risk factors associated with the development or progression of Alzheimer's.
If that wasn't a big enough Advisory Council, the law also calls out membership by 15 non-federal members: 2 Alzheimer's patient advocates; 2 Alzheimer's caregivers; 2 health care providers; 2 health care providers; 2 representatives of State health departments; 3 researchers with Alzheimer's-related expertise; 2 voluntary health association representatives including a national Alzheimer's disease organization that has demonstrated experience in research, care, and patient services (I wonder if this is the Alzheimer's Association?), and a State-based advocacy organization that provides services to families and professionals; 1 individual with a diagnosis of Alzheimer's disease; and 1 representative from a historically underserved population whose lifetime risk for developing Alzheimer's is markedly higher than that of other populations.
The law establishes that the meetings of the Advisory Council shall be quarterly and they shall be open to the public. The law indicates the Advisory Council shall prepare an annual report for the Secretary of Health and Human Services and Congress. This report includes annual evaluations of all federally funded efforts in Alzheimer's research, risk reduction, public health, clinical care, and institutional-, home-, and community-based programs and their outcomes.
Finally, the clincher - the Budget. For FY2024 and each subsequent fiscal year, the director of NIH shall prepare and submit, directly to the President for review and transmittal to Congress, after reasonable opportunity for comment, but without change, by the Secretary of Health and Human Services and the Advisory Council, an annual budget estimate for the initiatives of the National Institute of Health pursuant to the reports and recommendations made under this Act, including an estimate of the number and type of personnel needs for the National Institute of Health.
The last line of the act indicates the Project shall expire on Dec 31, 2035.
Before retiring as a federal employee, I thought I was generally familiar with the federal budget process. Namely, the Office of Management & Budget (OMB) under the President solicits budget inputs from all federal agencies. Then, in conjunction with the White House, OMB develops the federal budget which is submitted to Congress. I wasn't aware that Congress had ever passed a law directing a gov't agency to bypass this standard process, with director of NIH preparing a budget that goes "directly to the President for review and transmittal to Congress." This language is ambiguous to me - in the President's review can he decide to say cut the budget by 50%? Regardless, I found this a very interesting process.
One wonders how all of this will play out with the new administration and with Congress. For the FY26 budget (starting Oct 1, 2025), what will the new NIH Director propose for the "Professional Judgement Budget" to implement the National Alzheimer's Project? Also, just because Congress wrote a law directing NIH to prepare a "Professional Judgement Budget" bypassing the normal process with OMB, Congress still could chose to make modifications to the NIH-developed budget.3 -
LBC83, thank you so much for your post and for taking the time to provide in-depth information on the cuts to Alzheimer’s research. It is truly appreciated.
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