The Longitudinal and the Short of It
The Longitudinal…
Longitudinal studies are a key element of any serious public health program. Asking the same questions and taking the same measurements of the same people periodically over extended times provides a wealth of valuable information for everything from diagnoses to prevention efforts, identifying who’s likely susceptible to what and when, and forming the basis for recommending changes in behavior, vaccination schedules, etc.
Unfortunately, it appears that the recent research cuts by Health and Human Services and its constituent agencies as well as other governmental departments, may have ended some of these studies. I say “appears” because the DOGE website (www.doge.gov) is a worthless resource for trying to identify which programs, grants, or contracts have actually been terminated by the Trump Administration. Aside from the fact that the site is filled with errors, The New York Times points out that DOGE has recently (and no doubt purposefully) made it harder to verify their claims. [ 1 ] Surprisingly (or really, not so surprisingly) the site contains no ability to search, an easy tool to install on any website. And go to the section labeled “Savings” and you’ll see that it recently claimed 10,871 contract terminations, listed on 1,088 pages. But, aside from being unsearchable (it’s nearly impossible to find a specific contract) the entries are also not sortable by the column headings “Agency“ or “Vendor,” another website function that is easily implemented. These shortcomings –lack of truth and accessibility– seem cynical and deliberate.
What we do have is anecdotal reports of longitudinal study cancelations, compounded by two factors: (1) after public outcry, some studies have been restored, so their status is rapidly changing, and (2) some institutions may be reluctant to publicize terminations in the hope of not upsetting the administration and possibly having funding restored at a later time. In addition, we don’t know if longitudinal studies have been crippled or stopped because of the across-the-board reduction in allowed overhead costs for research programs. [ 2 ]
Cancelled Then Restored - TACO
Though originally coined to describe Trump’s many reversals on tariff rates, TACO (Trump Always Chickens Out) aptly describes what has happened to some cancelled-then-reinstated studies as well. [ 3 ] An example of these whip-saw reversals is the Women’s Health Initiative (WHI). Begun in 1992, the program has over 42,000 participants enrolled and tracked through 40 regional clinical centers. On April 21, 2025, WHI was informed that contracts for the regional centers would be cancelled as of the end of the fiscal year and funding for the WHI clinical coordinating center would end in January of 2026. On May 5th, only 14 days later, funding was restored. [ 4 ]
The reason given for terminating the study was this:
“The decision was made because the National Institutes of Health, which funds the Women's Health Initiative, or WHI, has ‘initially exceeded its internal targets for contract reductions,’ Nixon* said. ‘We are now working to fully restore funding to these essential research efforts.’ The Trump administration has demanded that all federal health agencies cut their spending on contracts by at least 35%, undergo massive layoffs and terminate hundreds of research grants.” [ 5 ]
[*Andrew Nixon, spokesman for HHS]
This seems disingenuous at best. Given the administration’s distain for women, it’s more likely that the study was cancelled simply because of its focus on women. And all of this, despite the study’s remarkable achievements: “The lessons learned from the hormone study have resulted in enormous savings in health care costs, researchers have found — about $35 billion between 2003 and 2012, according to one study, because of the number of cancer and cardiovascular disease cases that had been averted. For every dollar spent on the W.H.I., $140 was saved.” [ 6 ]
Another example of a cancelled-then-restored study is one conducted by the CDC, comparing cancer incidence among firefighters between those who responded to the 911 attack and firefighters in other cities. [ 7 ]
Possibly Temporarily Stopped but Definitely Permanently Disabled
If, optimistically, funds were again made available for cancelled studies, would it even make sense in all cases to resume them? How damaging would it be to have a year (or more likely, a four year) gap in the data set? It would seem that that would severely limit the ability of researchers to draw meaningful conclusions. It would be like looking at a picture that has a section blacked out; you might infer, but could you reliably tell, what is missing? What if behaviors during that gap period (e.g., four years) changed and were of course not reported; for example, increases in smoking, use of alcohol, use of sedatives, etc.
And think of it from the participants’ perspective. After being told, in effect, we don’t need or value your information, how many would be willing to start providing it again? That is, if they could even be found since people move and change email addresses and phone numbers. With no ongoing study, there would be no need or incentive for participants to report these changes.
Here’s an example of the unnecessary uncertainty: the Baltimore Longitudinal Study of Aging (BLSA). This study has been collecting data for fully 67 years (begin in 1958) but its continuation is now in question, as this “Notice” on the BLSA homepage makes plain:
Why is this worrisome? The National Institute on Aging (at NIH) highlights these results from the Study:
“While there is still much to learn, two major conclusions can be drawn from the BLSA data. First, changes that occur with aging do not inevitably lead to diseases such as diabetes, hypertension, or dementia. A number of disorders that typically occur in old age are a result of disease processes, not normal aging. Second, no single, chronological timetable of human aging exists. We all age differently. In fact, in terms of change and development, there are more differences among older people than among younger people. Genetics, lifestyle, and disease processes affect the rate of aging between and within all individuals.” [ 8 ]
These seem like significant, fundamental findings and the NIA site explains that these have helped direct research in promising directions. And given the demographic shifts to an overall older population, both here and abroad, this would seem like a study of critical importance…not one to cancel.
The Value of Longitudinal Studies
There are many diseases and conditions that take years to fully manifest. And there are also behavioral changes whose effects similarly may not be seen for extended periods. This is where longitudinal studies shine. For example:
Mesothelioma
“It can take 15 to 40 years or more to get mesothelioma after being exposed to asbestos.” (Mayo Clinic) [ 9 ]“Over a period of 10 years, 2769 volunteers formerly exposed to asbestos were annually examined and liquid biopsies were collected. [ … ] The existing cohort of individuals at risk is highly suitable for the validation of blood-based biomarkers for the early detection of mesothelioma as well as lung cancer.” (Cancers (Basel)) [ 10 ]
COVID-19
“Among participants followed up to 3 years after initial infection, those with current Long COVID had worse physical and mental health outcomes. The majority of those with Long COVID did not resolve, with less than 2% having resolved Long COVID. The resolved Long COVID cohort had moderately worse physical and mental health compared with those never-having-Long COVID. COVID-19 vaccination was associated with better outcomes.” (The Lancet) [ 11 ]Epstein-Barr Virus
“EBV establishes lifelong latency in infected lymphocytes following acute infection. It can reactivate under appropriate conditions, namely those associated with diminished cell-mediated immunity.” (NIH) [ 12 ]Coronary Heart Disease
“History of HZ [ Herpes Zoster – shingles ]was significantly and independently associated with higher long-term risk of stroke and CHD [ Coronary Heart Disease ].” (Journal of the American Heart Association) [ 13 ]Cancer from Smoking
“- Within 5-10 years of quitting, your chance of getting cancer of the mouth, throat, or voice box drops by half.
- Within 10 years of quitting, your chance of getting cancer of the bladder, esophagus, or kidney decreases.
- Within 10-15 years after you quit smoking, your risk of lung cancer drops by half.
- Within 20 years after you quit smoking, your risk of getting cancer of the mouth, throat, voice box, or pancreas drops to close of that of someone who does not smoke. Also, the risk of cervical cancer drops by about half.”(CDC) [ 14 ]
“Although the associations of cigarette smoking with alterations in BP are small, the greater PP observed in consistent smokers may contribute in part to the higher cardiovascular disease risk observed in this group because PP is a strong predictor of cardiovascular disease risk after middle age.” (Journal of the American Heart Association) [ 15 ]
Cancelled Studies
What’s been cancelled? As stated above, it’s hard to tell, but here are just a few examples (–see also: [ 16 ]:
“VA's Million Veteran Program (MVP) is a national research program looking at how genes, lifestyle, military experiences, and exposures affect health and wellness in Veterans. Since launching in 2011, 1 million Veterans have joined MVP. It's the largest research effort at VA to improve health care for Veterans and one of the largest research programs in the world studying genes and health.” [ 17 ]
‘There are just weeks left to save the more than 1.5 million frozen biological samples that have powered some of the biggest and longest running studies of chronic disease risk factors in history. Researchers from Harvard T.H. Chan School of Public Health and their colleagues have collected samples including DNA, blood, urine, stool, and breast cancer tumor tissue from participants in the Nurses’ Health Studies and Health Professionals Follow-Up Studies for nearly 50 years. Used in conjunction with the detailed questionnaires participants regularly fill out, the samples have led to major scientific advances, including identifying the benefits of the Mediterranean Diet and the dangers of trans fats. But grants for the long-term studies were terminated in recent cuts to Harvard research by the Trump administration. If no additional funding is secured, the researchers will only be able to supply the nitrogen needed to run the dozens of giant freezers holding the samples for a few more weeks. The longevity of these studies—which would take decades to recreate if the samples are lost—offer a rare opportunity to study how health behaviors over time influence healthy aging,…” [ 18 ]
“On 1 April, [ 2025 ] the US government abruptly laid off all 17 people running the country’s only nationwide survey on substance use and mental health. For more than half a century, the National Survey on Drug Use and Health (NSDUH) has tracked these issues across the US, helping inform doctors, researchers and policy-makers. Its future is now uncertain, as it isn’t clear who – if anyone – will take over the task.” [ 19 ]
“And the department has placed on leave the team that oversees the Pregnancy Risk Assessment Monitoring System, a collection of survey responses from women before and after giving birth that has become a crucial tool in trying to address the country’s disconcertingly high rate of maternal mortality.” [ 20 ]
“The Trump administration has canceled funding for an ongoing 30-year, nationwide study tracking patients with prediabetes and diabetes, researchers said, at a time when top officials have emphasized their determination to curb the incidence of such chronic conditions. Investigators working on the landmark Diabetes Prevention Program found out last week that the National Institutes of Health has halted funding for the project.” [ 21 ]
So we see that there’s another, less obvious and perhaps more cynical way to cut programs or studies; simply fire the people running them. Even if the administration does not outright eliminate a function, if there’s no one to staff it, no one to collect and analyze the data, no one to manage the process –then it’s been effectively killed.
…And The Short of It (What To Do)
The most effective ways to get this administration to reverse course is to either show large opposition via the media or demonstrate substantial opposition to members of Congress. Or both. Generally speaking, though not in all cases, Representatives tend to be more parochial, listening mainly if not exclusively to constituents, while Senators often take a more national view and entertain communications from citizens anywhere in the country. [ 22 ]
If you’re a public health focused philanthropist or foundation, consider pledging four years of support as bridge-funding to a cancelled study. If that’s too great a lift, think about forming a consortia of like-minded individuals or organizations to achieve this end. At a minimum, do the research to create a list of cancelled studies and post it so that others might then pick up the funding.
Notes
Longitudinal is of course etymologically related to longitude and if you haven’t already, I urge you to read Dava Sobel’s wonderful book Longitude: The True Story of a Lone Genius Who Solved the Greatest Scientific Problem of His Time.
The header image is a capture of a photograph of sardine tins in Portugal. (The year-numbers are merely decorative and don’t indicate when the sardines were packed!) See the original photo here: https://www.pexels.com/photo/colorful-boxes-of-sardines-18331781/ taken by Elisa Giaccaglia. You can see more of her work here: https://www.pexels.com/@elisa-giaccaglia-704611068/
[ 1 ] https://www.nytimes.com/2025/03/13/us/politics/doge-errors-funding-grants-claims.html
[ 2 ] https://grants.nih.gov/grants/guide/notice-files/NOT-OD-25-068.html
[ 3 ] The term TACO was coined by Robert Armstrong of the Financial Times. https://www.theguardian.com/us-news/2025/may/29/trump-always-chickens-out-taco-investors-narrative
[ 4 ] https://www.whi.org/md/news/whi-funding-announcement
and
https://www.whi.org
[ 6 ] https://www.nytimes.com/2025/04/24/health/womens-health-initiative-cuts.html
[ 10 ] https://pubmed.ncbi.nlm.nih.gov/38136442/
[ 11 ] https://www.thelancet.com/journals/lanam/article/PIIS2667-193X(25)00036-5/fulltext
[ 12 ] https://pmc.ncbi.nlm.nih.gov/articles/PMC8470332/
[ 13 ] https://pubmed.ncbi.nlm.nih.gov/36382961/
[ 14 ] https://www.cdc.gov/tobacco/campaign/tips/diseases/cancer.html
[ 15 ] https://pubmed.ncbi.nlm.nih.gov/33902307/
[ 16 ] https://apnews.com/article/trump-hhs-cdc-fda-nih-cms-layoffs-5aba829b829d9e1a0167c4a0d968aadb
and
https://apnews.com/article/cdc-disease-tracking-health-surveillance-554eb9aa20b758714eba8b835dcde856
[ 17 ] https://www.research.va.gov/mvp/
and
https://www.nytimes.com/2025/05/16/us/politics/trump-harvard-veterans-research.html
[ 20 ] https://www.propublica.org/article/trump-doge-data-collection-hhs-epa-cdc-maternal-mortality
[ 22 ] To send an email to a Representatives, many require that you provide a street address and a nine-digit zip code, both of which will be checked against the district’s boundaries before you are allowed to use an online form to send a message to the Representative.