When Trump’s fights hit close to home
On March 19, the Trump administration announced that it was suspending around $175 million in funding to the University of Pennsylvania due to its opposition to the institution’s stance on transgender athletes.
Despite the fact that I was living in St. Petersburg, FL, this decision hit very close to home; I am from Philadelphia and a big fan of the work, research and otherwise, performed by universities. Never a fan of President Trump’s overreach and vindictiveness, this stung hard.
Unfortunately, I would soon find out exactly how much I appreciate the research done by universities - especially Penn.
Two weeks prior to the White House announcement regarding Penn, my wife Jamie had bloodwork done for a routine physical she was having the next day. That afternoon, she pulled up the results in our system portal and read words that are exactly the things you don’t want to read, the sort of words that can alter life in an instant: the word critical, bold, in caps and written, ominously, in red, next to various markers that very well meant she might have cancer.
Astoundingly, our primary doctor in St. Petersburg was not alarmed. He was not even worried. “You’re not sick,” he said to Jamie, me breathing a naïve sigh of relief. “Let’s monitor over the next year and see how things look.” Some, he said, have abnormal blood counts that don’t necessarily intimate a problem. I walked out feeling that things were probably okay, that our worst fears were unfounded. The man was wearing a white coat after all, representing a medical group in one of the 20 largest metro areas in the country.
Jamie was not so sure. As usual, she was the smart one.
She sent the hematology results to her sister in Philadelphia. My sister-in-law owns a home health care agency and has contacts at local hospitals. One of those contacts read the results and had a much different reaction than our St. Pete doc: stop what you’re doing and get a bone marrow biopsy. Now.
We flew up to Philly, had the biopsy. On March 14 – five days before the White House announcement – we got the news: Jamie has MDS – Myelodysplastic Syndrome - a blood cancer. At first, the doctor suggested it might be on the lower end of the spectrum, that monitoring and managing for the rest of Jamie’s life – she, like me, is 64 – would suffice.
Soon after, and after biopsies at two more cancer centers - one each in Philly and the Moffitt Center in Tampa - it was divulged that Jamie’s MDS was worse than originally feared, that she would need a bone marrow transplant. The sadness and fear from hearing this diagnosis was matched only by the anger felt towards the St. Pete doctor who flippantly told us not to worry.
I later wrote him a long note in the portal. He has not responded. Perhaps he feared I had blind copied my lawyer.
Penn would not go broke if it lost $175 million. Its endowment as of June, 2024 was around $22.3 billion. Its consolidated operating revenue as of fiscal 2022 was $14.4 billion. It is said the school receives around $1 billion annually in federal funding.
But monies don’t simply get shifted from one priority to another and reports at the time stated that the $175 million would most directly affect research and student loan programs. At the time, the university said the cuts would mostly jeopardize research on preventing hospital-acquired infections, drug screening against deadly viruses and protection against chemical warfare among other studies.
Recently, Penn relented, and the funding is to be restored. The school agreed to remove male athletes – and, of course, former male athletes now competing as females - from women’s sports and restore athletic records to female competitors.
It’s a Faustian bargain to be sure but at the moment, I am not conflicted; with a spouse about to enter Penn’s hospital for a month that will include a bone marrow transplant that will hopefully save her life, I’d sacrifice some transgender athletes for research. In the world – and country – I grew up in, a university’s research funding would never be threatened and mature, educated folks would chat about things such as whether or not a Lia Thomas can compete for Penn’s women’s swimming team with no extremely expensive carrot at the end of the stick.
Oh, lest we forget: our recent and current president graduated from Penn’s Wharton School in 1968. Guess nostalgia was absent from his March decision.
This is not all about my wife or Penn, my selfish and quite possibly legit reasons notwithstanding.
The White House has unleashed a lot of fury in its first six months (back) in power and much of it will have potentially far-reaching impacts on the health and lives of millions in the future. Most of those affected will be the least able to withstand cuts to their safety net.
Medicaid: $1 trillion in cuts over the next decade, mostly due to new work requirements, eligibility checks and cost-sharing which will mostly affect low-income individuals. It is estimated that 11.8 million people could lose health insurance by 2034
Affordable Care Act (ACA) marketplaces: the big, beautiful bill will make it harder to enroll and retain coverage.
Planned Parenthood: the bill bans Medicaid funds from going to clinics that offer abortions
Rural health: the Medicaid cuts will reportedly – and disproportionately – impact residents in rural areas, jeopardizing access to healthcare and potentially leading to hospital closures.
Health and Human Services: the administration plans to shrink the HHS by nearly a quarter including cuts to the Center for Disease Control and National Institute of Health. NIH funding would drop from $45 billion to $27 billion, harming minority health and research of all kinds, including that done at universities.
CDC: several programs would be shut down including those focusing on global health, chronic disease prevention, HIV/AIDS and minority health among others. Many employees were laid off April 1.
Executive orders: Trump reversed many Biden-era policies, scaling back ACA provisions, rescinding Centers for Medicare & Medicaid Services drug pricing initiatives and withdrawing from the World Health Organization (WHO).
USAID: the United States Agency for International Development, established in 1961 ceases to exist as a separate agency after Trump dismantled it shortly after taking office. Many worry that hunger and famine – already on the rise, worldwide – will worsen, especially for the most vulnerable recipients of its largesse.
The bill, which passed the House and Senate without a single Democratic nod, cuts federal spending by around $1 trillion in the next decade. Trump’s 2017 tax cuts would be extended, permanently, good news for the highest income bracket. Some temporary tax breaks most helpful to low-income people are due to expire after 2028. There is a boost to the Child Tax Credit but many may not collect due to eligibility requirements or income thresholds. There will also be cuts to the Supplemental Nutrition Assistance Program (SNAP), further targeting low-income individuals.
The silver lining for those opposed to these measures? There are midterm elections in around 16 months. The Republicans currently hold a 220-212 edge in the House with three vacancies – the deaths, recently, of three Democrats – and a 53-47 edge in the Senate. It should be noted that two of the 47 are Independents that caucus with the Dems.
When Jamie and I received the revised diagnosis, we had a seemingly simple decision to make: where would she receive her treatment.
There was of course nothing simple about this. Jamie and I were still living in St. Pete but had already decided to move to Denver to be near her pregnant, older daughter. I was researching jobs and apartments, all eventually secured. I was about to receive my job offer in Denver – coincidentally, at a university – when we found out Jamie needed the transplant and it was determined we would move back to Philly, as it was suggested she be near family and friends. Recovery, we were assured, would be taxing, on her, and me.
We had briefly considered staying put since Moffitt is in Tampa. The lead hematologist there had confirmed the diagnosis and suggested the targeted, first phase of her treatment, a pill that would hopefully put her cancer in remission in advance of the transplant.
Tibsovo received its final FDA approval in October, 2023, approved for relapsed or refractory myelodysplastic syndromes with IDH1 mutations.
In mid-April we met with the heads of hematology and the bone marrow transplant division at Penn and were impressed enough that we decided on the spot to have them handle Jamie’s treatment. In a sense, we had little choice: Jamie had a fever and was admitted the same day, staying for a week. She had practically no immunity.
During that week, the lead hematologist agreed with the Moffitt suggestion of Tibsovo as a first treatment. Jamie’s numbers improved immediately, and she has been as healthy as could be hoped for as she prepares for her hospital admission next week. The impact of university research and the shared finding of these two doctors have led us to the desired result, a normalization of most of Jamie’s blood counts. It has brought her two relatively healthy months after an April filled with trips to and from doctor offices and hospitals.
I can only hope that people and caregivers fighting this disease never have to worry that their university researchers will be stymied from their appointed missions.
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I hope your wife makes a full and speedy recovery. Best wishes to you both.