You May Die of Alzheimer’s Because of Elon Musk

DOGE isn’t saving us money. Elon Musk and his miscreants are chopping willy nilly and the true implications aren’t being seen by most people. Even Alzheimer’s research, something we can all agree is important because it’s still such a mystery, is being greatly impacted.

We spoke with a UC researcher who we’ve granted anonymity to discuss the state of Alzheimer’s research. Be forewarned: the Trump administration’s cuts spell out a dire situation and this piece is heavy as a result. The interview has been lightly edited for clarity.

BAS: What is your background? How did you come to be in this field?

I have been involved with research since I got out of college. Prior to graduate school I worked in a lab focusing on neurodegenerative disorders such as Alzheimer’s disease, fronto-temporal dementia, and ALS. The scientific aspect of trying to understand complex diseases really grabbed my interest, but the opportunity to interact with patients involved in these studies provided motivation that goes beyond the personal satisfaction I get from this work.

I had some deeply impactful experiences that I still think about often. As is often typical in this line of work, I then completed about a decades-worth of graduate and post-doctoral training before receiving my faculty appointment. 

BAS: How does grant funding work?

There are generally three grant application cycles per year. You apply during a given cycle and your application is reviewed by a panel of other researchers in what is called a study section roughly 3-4 months later. If your application receives a score that is under the current payline set by the institute, it will then be discussed at an Advisory Council meeting 3-4 months after that. The paylines depend on the NIH budget, but last year they ranged from about 7-18%. 

In other words, to be considered for funding, your grant needed to have scored in the top 7-18% of grants submitted.  The Advisory Council makes their decisions based on your score as well as priorities of the institute. If your project is funded, you receive a Notice of Award. This can sometimes come relatively soon after Council meets, but can take months. The majority of applications aren’t funded, and the ones that are usually require multiple submissions. For those that do eventually get funded, a two year timeline from application to funding is not uncommon.

As a side note, when the government is under a Continuing Resolution, paylines start out very conservative until a budget is passed and NIH receives their allocation. The current congress has essentially decided to extend the current CR through the year, so from what I have seen, most institutes have not even released paylines this year.

BAS: How have things changed in this political climate? Was it immediate (on a specific day / week or at a memorable moment) or gradual?

Now to how things have changed. Grant-funded research always comes with ups and downs that mirror the economy and the priorities of who is in government. This is different. We all knew things were going to be difficult, but I think everyone has still been shocked at the speed and extent to which science is being attacked. This started with a communications blackout and travel freeze for NIH staff. Internal NIH research was frozen and scientists laid off. Then study sections and Advisory Council meetings were cancelled. Without these meetings, new funding of external grinds to a halt. What is worse, it takes months for NIH staff to find a full panel of reviewers and schedule the meeting, so when they are cancelled they cannot just be postponed a few weeks.

These meetings can involve 20+ researchers who agree to spend two full days discussing applications, in addition to the dozens of hours spent reviewing those applications beforehand. Study sections did eventually resume, but Advisory Council meetings still were not happening, so even applications with a fundable score were just stuck in limbo. Although Advisory Councils are presumably occurring now, very few new grants are being funded. 

There have also been some major policy changes with respect to diversity, equity and inclusion. The administration put out an executive order barring any activity deemed to be DEI-related, but the order was so vague that noone – including people in NIH – know how to interpret it. It is hard to see any other purpose than to cause chaos. We have seen grant applications rejected and existing grants terminated because they contained some element related to DEI. In particular, research on  transgender and gender minority health is being targeted. It is unclear how many of these decisions are made, but it seems like they are based on keyword searches. This has resulted in grants being terminated that I can only imagine were not the intended targets.

The thing is, essentially all grants discuss diversity to some extent because it has been required in NIH applications. Historically, research studies were predominantly male, white, highly educated, and drawn from urban centers near research institutions. This has been a major barrier to addressing health disparities, so NIH has – until now – made it a priority to either include representative samples or provide scientific justification for using a non-representative sample. Therefore, most grants could be at risk for termination depending on how the policy is interpreted. 

As a kicker, the language used in these termination letters is filled with hostility and contempt. It’s hard to imagine the mindset behind these letters. Then again, I find it difficult to understand how people can be so motivated to cause pain and suffering of fellow Americans. Individuals in the administration have explicitly stated that their goal is to cause trauma among those they are targeting, and to be honest, they are succeeding.  

However, DEI isn’t the only topic being targeted. Grants studying HIV, COVID, mRNA vaccines, and infectious diseases in general have been cancelled. The administration has also enacted blanket funding freezes on the order of hundreds of millions of dollars in grant funding to certain institutions. The primary reason given for this is to punish universities for not doing enough to combat antisemitism on campus, but given the words and actions of people that hold influence with this administration, that rings hollow. Other reasons have been that these universities worked with USAID or had a transgender athlete on one of their sports teams (in 2022).

I think there is also a misconception that these funds are given as “blank checks” to the unversities, although I suspect some of the people making these claims actually know better. For example, NIH does not write a check for $400 million to Columbia. That $400 million is paid through individual grants for specific research projects that have been reviewed by panels of experts and approved by NIH as meeting their priorities. The way in which that money is spent is highly proscribed, and is tracked by both the university and NIH. Anyone can go to publicly available websites that report on what projects are being funded and how much they receive. 

BAS: How has it impacted your work?

This has had major impacts on on-going research. For example, 14 Alzheimer’s Disease Research Centers around the country are awaiting grant renewals because their funding ended on March 31st. These centers support a huge amount of research and training activities at their institutions, and right now they are in danger of shutting down. I know that large scale research programs on cancer and infectious disease are also being disrupted. It can be hard to see how much of the research we do has an impact on people’s day to day lives, but every medical breakthrough is based on years, if not decades, of basic science research. Unless something changes soon, there is a ticking clock counting down the time that biomedical research in America will continue to happen.

Without this work, our health and safety will be worse off. However, there are also immediate consequences as well. NIH-funded clinical trials have been shut down with no warning. For many patients, these clinical trials are their last resort, and the idea that they could be left without that care and with no alternative options is unconscionable.

Research on drug treatment receives a lot of attention, but it is also important to acknowledge the breadth of work that NIH supports. How can we best help veterans suffering from PTSD? How can we lower barriers for people in rural areas to access healthcare? What types of messages are needed to engage people of different ages? What policies can governments adopt to improve health outcomes without increasing cost? All of these fall within the purview of NIH research.

In addition to the consequences for institutions, there are the impacts on individuals. Many biomedical researchers (myself included) are almost completely grant funded (NIH grants pay 97% of my salary). Our research staff are funded completely by grants. We constantly apply for new funding so that as one grant ends another takes its place. The disruption to funding means that many labs may face gaps in funding. I know of labs that have had to lay off staff already, and it is untenable for faculty to go months with only partial salaries. This will not just mean that people lose their jobs, but also their careers because every research institution in the country is facing this problem.

The ironic thing about this is that the actions taken by this administration are resulting in massive losses in productivity and efficiency. The orders passed down are so vague that even people in NIH do not know how to interpret them. That means that people at every level of NIH and research institutions are spending huge amounts of time trying to figure out what these policies mean and then game-planning for several different scenarios.

The uncertainty in funding also means that many people are not hiring personnel or purchasing supplies that they need to carry out their research because those funds may be needed to cover existing salaries if it becomes difficult to obtain new grants. It is also hard to do your best work when you are worried about how you are going to keep paying not only your own salary, but the salaries of staff and trainees. I can assure you that research productivity has dropped substantially under this new administration. What we are also going to see is fewer returns on past investments.

Let’s take a typical 5 year project that gets terminated in the 4th year. The money has already been spent to collect the data, but now we’re going to stop work before anything can be gleaned from it? The problem is even worse for the many longitudinal cohort studies that are in danger of ending. In the field of Alzheimer’s disease, we depend on these studies to understand how factors earlier in life can affect later-life risk for developing the disease. These studies have been following people for decades, but if we don’t track how they are doing at older ages, all that time, money, and effort is for naught. 

BAS: What do you wish the public understood about this current moment? 

If we decide to restart this type of work, it will take decades to get back to this point, and costs are only going up.

There is one other point I want to touch on. I hear the argument from Elon and those like him that the private sector is more efficient, and government workers or government-funded research is wasteful. Yet, there is also a reason why industries such as tech and pharma cluster where they do, and why these companies are very against cutting funding to universities. First, all approved drugs over the past few decades have been based on NIH-funded research. There is constant interaction between academic institutions and private companies to take those initial discoveries into the clinic. They also depend on universities to train the people that they hire.

A critical aspect of NIH funded research and training that takes place at academic institutions is that individual projects are not focused on turning a profit. To properly train a new researcher, they must be given the time and space to pursue things that may not ultimately be productive. The experience itself is what matters.  The story of ozembic is now becoming more widely known, but it started out with scientists studying lizard spit. There are plenty of similar examples where research that does not hold an obvious economic return eventually serves as the lynchpin for huge breakthroughs (with correspondingly huge financial returns).

Private companies do not have this luxury. They cannot wait years for an employee to develop and they cannot pursue projects with little financial incentive. THe fact that NIH-funded projects don’t turn a profit individually does not mean it is not a massive economic driver in the long run.  NIH funding returns about $2.56 per dollar spent. How many investments have that type of return?

Even if private companies were willing to carry out the same type of research, the costs would increase dramatically. First, salaries are MUCH higher in private industry, Second, as an academic researcher, I am evaluated on my research, teaching, and service. In addition to the research that funds my salary, I am expected to take part in the type of service that makes the whole scientific enterprise run. This includes manuscript and grant reviews, and serving on committees. Essentially all of this effort is unpaid. Many of us consider it an obligation because we are supported by public money. If I were to move to private industry, I can tell you that I’m not going to spend all that time at night and on weekends working for free. 

Broke-Ass Stuart works because of reader support. Join us now.

Howdy! My name is Katy Atchison and I'm an Associate Editor for Broke-Ass Stuart.

I want to take the time to say thank you for supporting independent news media by reading BrokeAssstuart.com. Supporting independent news sources like Broke-Ass Stuart is vital to supporting our community because it amplifies the voices of a wide variety of diverse opinions. You also help support small businesses and local artists by sharing stories from Broke-Ass Stuart.

Because you're one of our supporters, I wanted to send over a pro-tip.

Our bi-weekly newsletter is a great way to get round ups of Broke-Ass Stuart stories, learn about new businesses in The Bay Area, find out about fun local events and be first in line for giveaways.

If you’d like to get our newsletter, signup right here, it takes 5 seconds.