Part the First: When Science Becomes a Matter of Belief Things Go Sideways. The current Secretary of Health and Human Services is getting his way. This is not a surprise. The President hired him to “go wild on health” and he is doing just that. Some have complained that as Secretary of HHS that RFKJr is unusual. Most of the previous occupants of that office have been politicians of one sort or another – Elliot Richardson, Caspar Weinberger, Joseph A. Califano Jr, Kathleen Sibelius. That is not a problem. A malign obtuseness is, however.
Preparation of the ground for RFKJr has been long and predictable and a lot of the work has been done by “believers,” as described in is guest essay by Dr. Rachael Bedard in The New York Times earlier this week: I went to an Anti-Vaccine Conference. Medicine is in Trouble:
Peter Hildebrand choked back tears as he told the crowd about his daughter, Daisy. She was 8 years old when she died in April, one of the two unvaccinated children lost in the measles outbreak that tore through West Texas. “She was very loving,” he told the audience.
It was Day 2 of the annual conference of Children’s Health Defense, the organization of vaccine critics previously led by Robert F. Kennedy Jr., who is now the U.S. health secretary. Mr. Hildebrand had been asked to speak on a panel titled “Breaking the Mainstream Media Measles Narrative” at the conference, which brought 1,000 people to an event center in Austin, Texas, this month.
Mr. Hildebrand spoke about mistrusting Daisy’s hospital doctor, who he said talked to his wife about measles when he was out of the room. “You know, just whenever I wasn’t around, he would sit there and be political about it,” Mr. Hildebrand said.
The panel also featured a woman from the Mennonite community where the Hildebrands live; two Children’s Health Defense (CHD) leaders; and three current or former doctors. One, Andrew Wakefield, is the British physician who lost his license after falsely linking the measles, mumps and rubella vaccine to autism. Another, Pierre Kory, is a former intensive care physician who, among other things, is a leading promoter of ivermectin as a Covid-19 treatment.
Mr. Hildebrand had granted the organization access to his daughter’s medical records. After reviewing them, Dr. Kory concluded that Daisy hadn’t died of measles, but of a hospital-acquired pneumonia that, he alleged, her medical team had treated incorrectly. This explanation convinced Mr. Hildebrand. He said that he would never bring one of his children to a hospital again and that “if anybody is going to try to force my kids to get the vaccines, they got something else coming.” All of the panelists agreed that the Hildebrands’ story had been misrepresented in national coverage of the measles outbreak.
During the height of the current pandemic there was a lot of talk of dying with COVID-19 versus dying of COVID-19. This was part and parcel of the eugenics foundation of MAHA, and it is nonsense. No one dies of AIDS, either. Instead, they die of “secondary” conditions because HIV destroys the immune system. This is a distinction without a difference. Why do people believe what they believe about disease? The sad case of Daisy Hildebrand can be explained as an example of “testimony.” Growing up among more than a smattering of evangelical Protestants, I learned from very devout but somewhat uncritical family members and friends:
When I shared the experience of watching Mr. Hildebrand with a friend who grew up in an evangelical church, she recognized something immediately. “What he was doing is called testimony,” she said. Testimony, in the tradition she grew up in, is “speaking the story of how you came to your truth, and how it helped you find your life’s purpose,” she explained. It’s about achieving catharsis, community and a calling all at once.
This insight shifted my understanding of what Children’s Health Defense does for people: why it attracts people like Mr. Hildebrand, how it emboldens them to share their stories and how it radicalizes them over time.
What CHD does is provide meaning to the suffering of the Hildebrand family and countless others. This is not too difficult to understand. And the transition the practice of medicine from a community-based tradition of healing to a “a secular, expert-centered, often impersonal culture” is largely responsible for the disbelief in the healthcare system we experience today. The same goes for the scientific establishment, where my colleagues’ hubris may yet destroy American science.
Until the advances of modern medicine, which have been astonishing during my lifetime, are complemented by the humane caring that has been lost in transition, we will continue down this dark dead end. And the websites of CHD and others will continue to offer comfort while asking for money. Harnessed to AI and complemented by the remaking of biomedical research at NIH, CDC, and FDA, the results are predictable. The world will get smaller in the coming Inconvenient Apocalypse. This will include Medicine, and that might not be all bad, in that it will provide the pathway to use of modern medicine to its universal fullest.
Part the Second: AI that Works. I have referred to AlphaFold before. That the amino acid sequence can, in a biological environment, specify the structure of a protein has been understood since 1961, with the work of Christian Anfinsen at the National Institutes of Health. Prediction of that structure required an extended gestation. But in only five years AlphaFold has revolutionized the study of protein structure and function. The next five years are likely to be astonishing.
Why has this worked so well? A combination of true genius, hardware, and judicious use of a finite training set of thousands of protein structures that have accumulated since the pioneering work of Max Perutz and John Kendrew. That 200 million predicted protein structures are now available makes me wish I were still in that game. Almost. Understanding the evolution of the multi-protein complexes that made multicellular life possible is now possible at the structural as well as evolutionary genetic level. I look forward to reading all about it! And so should the rest of us. The solution of secondary problems related to human disease are sure to follow.
Part the Third: What’s Up with ADHD? Diagnoses are going up, but what does that mean? Overdiagnosis due to better definitions and testing? Perhaps. As they say, “’tis complicated.” Dealing with hyper-achieving 20-somethings on a daily basis does get one’s attention. This article from Nature provides an update:
In some parts of the world, record numbers of people are being diagnosed with attention deficit hyperactivity disorder (ADHD). In the United States, for example, government researchers last year reported that more than 11% of children had received an ADHD diagnosis at some point in their lives — a sharp increase from 2003, when around 8% of children had (see ‘ADHD among US boys and girls’).
But now, top US health officials argue that diagnoses have spiraled out of control. In May, the Make America Healthy Again Commission — led by US health secretary Robert F. Kennedy Jr — said ADHD was part of a “crisis of overdiagnosis and overtreatment” and suggested that ADHD medications did not help children in the long term.
One thing that’s clear is that several factors — including improved detection and greater awareness of ADHD — are causing people with symptoms to receive a diagnosis and treatment, whereas they wouldn’t have years earlier. Clinicians say this is especially true for women and girls, whose pattern of symptoms was often missed in the past. Although some specialists are concerned about the risks of overdiagnosis, many are more worried that too many people go undiagnosed and untreated.
At the same time, the rise in awareness and diagnoses of ADHD has fueled a public debate about how it should be viewed and how best to provide support, including when medication is required. The emergence of the neurodiversity movement is challenging the view of ADHD as a disorder that should be ‘treated’, and instead proposes that it’s a difference that should be better understood and supported — with more focus on adapting schools and workplaces, for instance.
Whether medications help children in the long term, well, that is a good question even if it has been asked by the current Secretary of Health and Human Services. What is undeniable is that there is a problem with ADHD and a host of neurodivergent conditions, in that a distressing number of children and adults are on prescription drugs to manage their conditions.
Numbers are difficult to come by on the ground, but any number of medical students take medications for ADHD and various forms of anxiety. The one that gets to me is “test anxiety.” My old-school but supportive response to the latter is, “Who doesn’t have test anxiety?” It is beyond my ken how someone who cannot manage exam day stress will become a competent physician. But that is probably just me. I do know, however, that accommodations will not be granted during a medical emergency.
And one other thing, undoubtedly abject simplification on my part. I have noticed that sleep deprivation in children (and probably adults) causes symptoms that largely correspond to those diagnostic of ADHD. Just a thought about life in our modern world.
Part the Fourth: What if RFK Jr. reacted to his cousin’s terminal cancer as JFK reacted to his baby’s death? This is the question asked by Susan D’Agostino in STAT. The New Yorker essay by Tatiana Schlossberg has received a lot of attention this past week, as it should have. From Ms. D’Agostino:
Tatiana Schlossberg, granddaughter of President John F. Kennedy, revealed a terminal cancer diagnosis in a New Yorker essay published Sunday, on the anniversary of her grandfather’s 1963 assassination. She used the moment to call out her cousin, Secretary of Health and Human Services Robert F. Kennedy Jr., for policy decisions and budget cuts that threaten the health of those in the United States and beyond.
The Kennedy family has long understood what it means when medicine fails. In August 1963, Jacqueline Kennedy gave birth to a son nearly six weeks early. Patrick Bouvier Kennedy weighed just over four pounds, and his first breaths made clear something was wrong. His tiny chest fluttered and retracted — the effort of a body laboring to breathe. He was rushed to Boston Children’s Hospital, where doctors placed him in a hyperbaric chamber to flood his bloodstream with oxygen. But less than two days after he was born, Patrick died. The diagnosis was hyaline membrane disease — what we now call neonatal respiratory distress syndrome — the leading cause of infant death in the United States at the time.
Moved by his son’s death, President Kennedy signed legislation authorizing $265 million — more than $2 billion today — for research into newborn health. Federal funding began flowing to scientists studying the chemistry of lung development, the molecular structure of surfactant, and the physics of breathing.
The work was slow. Researchers had to determine whether surfactant could be synthesized or extracted safely, and how to deliver it into the airways of fragile infants. Each question demanded years of patient investigation, supported by grants unlikely to yield results for a decade or more.
Nearly two decades after Patrick’s death, pediatrician Tetsuro Fujiwara led a team in Japan that tested surfactant replacement therapy on ten premature infants, using surfactant extracted from bovine lungs and delivered directly into their airways. Within hours, babies whose lungs had refused to inflate began breathing on their own. Eight of the 10 survived; the remaining two died of unrelated causes. Clinical trials followed worldwide. By the 1990s, surfactant replacement therapy had become standard care.
Now, of course, surfactant therapy is standard and few babies die of hyaline membrane disease. This was a relatively “simple” problem of basic chemistry and physics, but it was solved due to basic biomedical research on the condition. The current Secretary of Health and Human Services seems beyond reach as he continues to “go wild on health.” But it also goes without saying that the opportunity costs of cancelled research may be unrecognized but that are certainly large. Who knows if the next, perhaps final, advance in the treatment of acute myeloid leukemia (AML) is just around the corner? No one. And certainly not Tatiana Schlossberg’s first cousin, once removed.
Part the Fifth: Happy Thanksgiving to Our American readers! And for those who might be interested in college football rivalry weekend, six minutes of comic relief from the essential and inimitable Matt Mitchell of Alabama. I grew up knowing this territory well and it would take me six or seven repeats to appreciate the semiotics of this presentation. Really. But a quick scan of the comments helps.
See you next week!
