Last Thursday, the Trump administration released a proposed rule prohibiting hospitals that receive Medicare or Medicaid funding from providing any gender affirming care to minors, even when privately funded.

This rule will foreclose access to gender-affirming care for families seeking care at hospitals, even those that have private insurance or are able to self-fund the treatment they need. Some states may pay for gender-affirming care through Medicaid, but hospitals would still be foreclosed from providing this care if they do not want to lose federal funding. The proposed rule is revolutionary in that it radically expands the use of Medicare and Medicaid as policy weapons.

Read the rest…

There’s no question this week. This newsletter is part two of last week’s newsletter.

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My father was buried on Sunday in the town of Alcobaça, where he grew up. The service, which included a full Catholic mass at my mother’s request, was held in a small chapel right next to the cemetery. The same cemetery that contains my grandparents, my sister, and several other relatives. But before you start picturing some old European gothic chapel made of stone, with a high ceiling, and featuring incredible gargoyles, this chapel was recently built, and featured all the charm of an airport Marriott conference room. (Also, he wasn’t actually buried on Sunday. The funeral service was on Sunday and then his body was driven off to a crematorium a few towns away, and buried a few days later, but that feels like a technicality, and “my father was buried on Sunday” seemed like a stronger opening line, so we’re going with that.)

I was the only son in attendance. (And yes, I am mentioning this in a very petty manner. But also, think of it like Chekhov’s gun. It goes off in the third act, and pulls the story together in a deeply satisfying way.)

The service was attended by a few family members and by my father’s friends. All of them asked me if I remembered them, which I did not. All of them asked me how my brothers were doing, and while I was tempted to make up fantastic stories (They’re off-planet and couldn’t make it back in time), or to tell the truth (They’re fascists now!), I ended up going with a non-committal “They’re fine.”

Let’s do a little geography. Alcobaça is located 13 kilometers from Nazaré, home of the world’s largest waves. (If you’ve seen HBO’s 100 Foot Wave you’ll know what I’m talking about.) My goal was to end this trip staring at those waves. So I was playing this little game where every well-meaning comment was just a wave coming at me. Rolling. Breaking. Washing over. Big waves. I was not at this service to do any mourning. That wasn’t my role. My role was to be someone all these people could say what they needed to say to and then move on. My mourning, which was still formless for reasons, would happen later. It would be between me and the sea, and the sea hates a coward.

Everything was a wave.

You’re the spitting image of your father. Wave. Let it break. Let it wash over you.

Your father and I spent a lot of time together. Wave. Let it break. Let it wash over you.

Your father was a good man. Wave. Let it break. Let it wash over you.

Your father often spoke about how proud he was of you. Wave. Big wave. 100 foot wave. Let it fucking break. Dive under. Be with the sea. Let it wash you ashore.

For the record, my father never once told me that he was proud of me. I’d made my peace with this a long time ago. The first in a long line of burials. But to find out that he was telling this to others ended up filling me with rage. It’s one thing to believe your father hasn’t given you a second thought. It’s another thing altogether to know that he has, but withheld this information from you—and apparently you alone—your entire life. It’s a mindfuck, and ultimately an act of cowardice. For fuck sake, tell your children you are proud of them. It’s the smallest of acts. Deliver it directly. Say it with your chest. Say it before you can no longer say it. Say it before they are hearing it from a stranger and wanting to pry your coffin open to ask you one last question. Because you’ll never be able to answer that question.

My father’s coffin was small. Smaller than I expected. Sitting in the middle of the chapel, a picture of him in front of it. I was expecting something larger. More imposing. He was so large in life. Looming over me as a constant threat of rage and violence. Covering all light. Covering his entire family in shadow. And now he was small. And in a box. And still. I walked up to him, and wished for a second that he could know that I was there. To know that he hadn’t broken me. To know that I wasn’t a coward. But I knew, and that would have to be enough.

During the service, the priest spoke about Jesus’ sacrifice, as priests like to do. And he spoke of fathers and sons. (Catholicism is a man’s game.) He spoke about how God the Father sacrificed his only begotten son blah blah. And I wondered if there wasn’t a better gospel. One where Jesus lives a nice long life. One where he meets someone and encourages her to follow her dreams, but also brings her (or him! or them!) blankets when they’re cold. A gospel where Jesus has kids and teaches them how to fish, or woodworking, and bandages their knees when they trip. A gospel where Jesus and his family are gathered together for Christmas and he receives lots of gifts (Jesus would get birthday gifts on Christmas). A gospel where Jesus teaches his kids kindness, and is there for them when they need someone to listen. A gospel where Jesus is your first call after a breakup and drops everything to meet you at the bar. A gospel where Jesus gets a dog, and ends up hanging out at the dog park. A gospel where Jesus picks you up after school and attends your soccer games, and isn’t one of those asshole parents who yells at the ref. A gospel where Jesus reminds you to make every minute count. A gospel where Jesus eventually slows down a little bit because his knees start to hurt, and maybe he grows a little paunch, but still enjoys working in his backyard garden, and eventually teaches his grandkids how to pull weeds so the tomato plants have room to grow. And maybe he has a few olive trees and makes his own olive oil. A Gospel where Jesus dies peacefully in his sleep, surrounded by family, and friends, and they miss him when he’s gone.

I wonder how different our lives would have been if my parents’ faith was centered on how to live a good life, instead of how to die a dramatic death. A good life is worth more than a dramatic death. A good life plants seeds in soil that a dramatic death steals to bury our sins.

The priest continues about how our suffering in the here and now ensures our place in paradise later, and I think, silently, that he can go fuck himself. Which may be unfair, as he is playing his role, as I am playing mine. All of this is happening as my mother, playing hers, holds onto me and cries loudly and I think of big waves.

After the service ends the mortician asks us if we’d like the coffin open and I say “NO.” before my mother can get an answer out.

The next day I meet my mother to help her tie up some loose ends, and she decides this is a good time to chew me out in public for never being there for them, being negligent in my duties as a son, not being there for my father when he needed me, telling me she needs me because she is mourning my father, and honestly I stop listening after a few lines and start thinking of big waves. Breaking. Washing over me.

“We have loose ends to tie up, correct?”

“Yes, but first I want to stop at this pastry shop and pick up some sweets for your brothers.”

The ones who love us least are the ones we try hardest to please.

The day before my flight back I wake up at dawn and take the bus to Nazaré. I walk along the beach, towards the large cliff where I see the funicular that takes you to the top. This is where I spent summers with my grandparents. The beach is calm. The sun is shining on the cliff, doing a whole postcard-worthy thing. In the summer this beach is crawling with tourists, and the smell of sardines being grilled on the sidewalk. Today it’s empty. It’s raining a little bit. It’s perfect. I’ve always appreciated the beach more in the winter, when the sea reclaims what’s theirs. I ride the funicular to the top of the cliff where I walk along a small winding road to the lighthouse at the tip.

More geography: the cliff separates Nazaré, a small fishing village with a nice calm beach from Praia do Norte (the north beach) which is where the big waves are. The big waves are caused by an undersea canyon right offshore that doesn’t extend to Nazaré. So you get a calm beach and you get a big wave beach, split right down the middle by a giant cliff. Duality. Metaphor. Blah blah.

I ended up missing the 60 foot waves, and the surfing competition that came with them, by a day. Which is fine, because although the waves weren’t as big it also meant less people, which fit what I needed to do. Which was staring at the ocean for a while. Which I did. I watched the big waves beat the fuck out of that cliff for a couple of hours. I watched the cliff stand there and take all of those beatings. Unbent. Unbowed. I watched waves form. I watched them grow. I watched them break. I watched some of them reach the shore, while others crashed into the cliff. I watched the sea put on a show. And the sea doesn’t put on shows for cowards, because the sea hates a coward.

If you’re waiting for the moment where I pulled out my father’s ashes and threw them into the sea it isn’t coming. One of the errands we’d done the day before was to settle up with the funeral agency. My mother asked when my father’s ashes would be returning and the funeral director said “Oh, they’re already here” as he rolled back his office chair and clipped the urn which was leaning against the wall on the floor with one of the chair wheels, giving a very satisfying clink.

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Thanks to everyone who sent kind words last week. They were incredibly helpful and nice to read. And thanks to everyone who’s been patient about the erratic schedule of the newsletter lately. This will be the last one of 2025. We’ll start back up, hopefully on our regular schedule in January. Which means…

🙋 Send me questions! I can’t answer questions if I don’t have them. And answering a question let’s me know that I’m helping someone, which is nice.

💰 If you enjoy my newsletter please consider “subscribing” for $2/mo. You get exactly the same shit you get for free, but it’s a nice thing to do if you can.

🎉 However you celebrate this time of year, and with whomever you choose to celebrate it with, please know that I love you. And I wish you happiness. Things may suck, but you don’t.

🍉 Please consider donating to the Palestinian Children’s Relief Fund. If we’re going to celebrate the birth of Jesus, we should stop bombing the place where it happened.

🏳️‍⚧️ Please consider donating to Trans Lifeline. And if there is a trans person in your life, please let them know they are loved, and they are here, and the world is so much better because they are here.

mprindle writes: The Texas Attorney General sued five major television manufacturers, accusing them of illegally collecting their users' data by secretly recording what they watch using Automated Content Recognition (ACR) technology. The lawsuits target Sony, Samsung, LG, and China-based companies Hisense and TCL Technology Group Corporation. Attorney General Ken Paxton's office also highlighted "serious concerns" about the two Chinese companies being required to follow China's National Security Law, which could give the Chinese government access to U.S. consumers' data. According to complaints filed this Monday in Texas state courts, the TV makers can allegedly use ACR technology to capture screenshots of television displays every 500 milliseconds, monitor the users' viewing activity in real time, and send this information back to the companies' servers without the users' knowledge or consent.

Read more of this story at Slashdot.

FCC Chairman Brendan Carr said in his Wednesday Senate testimony that the agency he governs "is not an independent agency, formally speaking." Axios: During his testimony, the word "independent" was removed from the FCC's mission statement on its website. The extraordinary statement speaks to a broader trend of regulatory agencies losing power to the executive branch during the Trump era. Last week, the Supreme Court appeared poised to allow President Trump to fire members of the Federal Trade Commission during oral arguments over the issue. Sen. Ben Ray LujÃn (D-N.M.) began the line of questioning, citing the FCC's website, which said the agency was independent as of Wednesday morning. By Wednesday afternoon, the FCC's mission statement no longer said it was independent. Chairman Carr would not respond directly to questions about whether he believed the president was his boss. He would not answer whether it's appropriate if the president were to pressure him to go after media companies. He suggested the president has the power to fire him and other FCC commissioners.

Read more of this story at Slashdot.

Neurologic diseases now affect 50% of the US population and are now the leading cause of disability nationwide, results of comprehensive analysis show.
Medscape Medical News

The top authorities of U.S. cancer statistics will soon have to classify the sex of patients strictly as male, female, or unknown, a change scientists and advocates say will harm the health of transgender people, one of the nation’s most marginalized populations.

Scientists and advocates for trans rights say the change will make it much harder to understand cancer diagnoses and trends among the trans population. Certain studies have shown that transgender people are more likely to use tobacco products or less likely to receive routine cancer screenings — factors that could put them at higher risk of disease.

The change is a consequence of Trump administration policies recognizing only “male” and “female” sexes, according to cancer researchers.

Scientists said the change will affect all cancer registries, in every state and territory, because they receive federal funding. Starting in 2026, registries funded through the Centers for Disease Control and Prevention and the National Cancer Institute will categorize cancer patients as male, female, or not stated/unknown. And federal health agencies will receive data only on cancer patients classified that way.

Registries currently specify whether a cancer patient’s sex is “male,” “female,” “other,” various options for “transsexual,” or that the patient’s sex is not stated or unknown.

President Donald Trump in January issued an executive order stating that the government would recognize only male and female sexes. Cancer registry officials said the federal government directed them to revise how they collect data on cancer patients.

“In the U.S., if you’re receiving federal money, then we, essentially, we weren’t given any choice,” Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries, told KFF Health News. NAACCR, which receives federal funds, maintains cancer reporting standards across the U.S. and Canada.

Officials will need to classify patients’ sex as unknown when a “patient’s sex is documented as other than male or female (e.g., non-binary, transsexual), and there is no additional information about sex assigned at birth,” the new standard says.

Missing the Big Picture

Researchers said they do not have high-quality population-level data on cancer incidence in transgender people but had been making inroads at improving it — work now at risk of being undone.

“When it comes to cancer and inequities around cancer, you can use the cancer registries to see where the dirtiest air pollution is, because lung cancer rates are higher in those areas. You can see the impact of nuclear waste storage because of the types of cancers that are higher in those ZIP codes, in those areas of the country,” said Shannon Kozlovich, who is on the executive committee of the California Dialogue on Cancer.

“The more parts of our population that we are excluding from this dataset means that we are not going to know what’s happening,” she said. “And that doesn’t mean that it’s not happening.”

For decades, cancer registries have been the most comprehensive U.S. surveillance tool for understanding cancer incidence and survival rates and identifying troubling disease trends. Each year, cancer cases are reported by hospitals, pathology labs, and other health facilities into regional and statewide cancer registries. The compiled data documents cancer and mortality rates among regions, races, sexes, and age groups.

Two federal programs serve as the top authorities on cancer statistics, with information on tens of millions of cases. The CDC’s National Program of Cancer Registries provides funding to organizations in 46 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Island territories. Its data represents 97% of the U.S. population. The National Cancer Institute’s Surveillance, Epidemiology, and End Results program, known as SEER, collects and publishes data from registries covering nearly half the U.S. population.

The information published by cancer registries has led to changes in treatment and  prevention, and the enactment of other policies designed to reduce diagnosis rates and mortality.

For example, data collected by cancer registries was essential in identifying rising rates of colorectal cancer among people younger than 50. As a result, U.S. guidelines now recommend that adults start screenings at age 45 rather than 50.

States have enacted their own measures. Lara Anton, spokesperson for the Texas Department of State Health Services, said epidemiologists with the Texas Cancer Registry in 2018 found that the state had the nation’s highest incidence rates of hepatocellular carcinoma, a liver cancer more common in men than women. The Cancer Prevention and Research Institute of Texas initiated a statewide effort aimed at reversing rising rates of liver cancer. The Texas Cancer Registry joined SEER in 2021.

“Once a cancer patient is entered into a cancer registry, we follow those patients for the rest of their lives. Because we really need to know, do patients survive for different types of cancer and different stages of cancer?” Durbin said. “That’s incredibly important for public policies.”

The North American Association of Central Cancer Registries maintains national standards outlining what kind of data registries collect for each diagnosis. It develops the list in partnership with the CDC, the National Cancer Institute, and other organizations.

For any given patient, under NAACCR’s standards, Durbin said, registries collect more than 700 pieces of information, including demographics, diagnosis, treatment, and length of survival. CDC and NCI-funded registries must specify the sex of each patient.

The NAACCR definitions and accompanying data standards are designed to ensure that registries collect case data uniformly. “Everyone essentially follows the standards” that NAACCR develops, Durbin said. Although registries can collect state-specific information, researchers said they need to follow those standards when sending cancer data to the federal government.

In an emailed statement, Department of Health and Human Services spokesperson Andrew Nixon said, “HHS is using biological science to guide policy, not ideological agendas that the Biden administration perpetrated.”

‘Backwards’ Progress

NAACCR routinely publishes updated guidelines. But the change to the “sex” category to remove transgender options in 2026 was an emergency move due to Trump administration policies, Kozlovich said. She was among a group that had pushed for changes in cancer data collection to account for sex and gender identity as separate data points.

According to an analysis of CDC data by the Williams Institute at the UCLA School of Law, 2.8 million people age 13 and older identify as transgender.

Scientists and trans rights advocates said in interviews that there are troubling signs that may make transgender people more likely to develop cancer or experience worse health outcomes than others.

“Without evidence of our health disparities, you take away any impetus to fix them,” said Scout, executive director of the LGBTQIA+ Cancer Network.

A study published in 2022 found that transgender and gender-diverse populations were two to three times as likely as cisgender people to report active use of cigarettes, e-cigarettes, or cigars. Tobacco use is a leading cause of cancer and death from cancer.

A Canadian study concluded in 2019 that transgender patients were less likely to receive recommended screenings for breast, cervical, and colorectal cancers. And a 2023 study from researchers at Stanford Medicine found that LGBTQ+ patients were nearly three times as likely to experience breast cancer recurrence as cisgender heterosexual people.

Scarlett Lin Gomez, an epidemiologist at the University of California-San Francisco and the director of the Greater Bay Area Cancer Registry, said that for at least 10 years the NCI had been interested in improving its ability to monitor cancer burden across patient populations with different sexual orientations and gender identities. Cancer registries are a logical place to start because that is what they’re set up to do, she said.

There’s been “slow but good progress,” Gomez said. “But now we’ve completely, personally, I think, regressed backwards.”

The decision not to capture transgender identity in cancer patients is just one change registries have confronted under the Trump administration, according to scientists leading surveillance efforts and state health agencies. An HHS mandate to reduce spending on contracts led to funding cuts for cancer registries in NCI’s SEER program. Scientists said CDC funds for registries haven’t been cut; however, the White House’s proposed fiscal 2026 budget aims to eliminate funding for the National Program of Cancer Registries.

Among the Trump administration’s other actions targeting trans people are canceling research grants for studies on LGBTQ+ health, dismantling the National Institutes of Health’s office for sexual and gender minority health, and stopping specialized services for LGBTQ+ youth on the 988 national suicide prevention hotline.

Without data, researchers can’t make a case to fund research that may help trans patients, Gomez said. “It’s erasure.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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