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Johns Hopkins University

We’re About to Find Out How Much Americans Like Vaccines

The Atlantic

www.theatlantic.com › health › archive › 2024 › 11 › rfk-vaccination-rates › 680715

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Robert F. Kennedy Jr., the nominee to be the next secretary of Health and Human Services, is America’s most prominent vaccine skeptic. An advocacy organization that he founded and chaired has called the nation’s declining child-immunization rates “good news,” and referred to parents’ lingering doubts about routine shots as COVID-19’s “silver lining.” Now Kennedy may soon be overseeing the cluster of federal agencies that license and recommend vaccines, as well as the multibillion-dollar program that covers the immunization of almost half the nation’s children.

Which is to say that America’s most prominent vaccine skeptic could have the power to upend, derail, or otherwise louse up a cornerstone of public health. Raising U.S. vaccination rates to where they are today took decades of investment: In 1991, for example, just 82 percent of toddlers were getting measles shots; by 2019, that number had increased to 92 percent. The first Trump administration actually presided over the historic high point for the nation’s immunization services; now the second may be focused on promoting vaccines’ alleged hidden harms. Kennedy has said that he doesn’t want to take any shots away, but even if he were to emphasize “choice,” his leadership would be a daunting test of Americans’ commitment to vaccines.

In many ways, the situation is unprecedented: No one with Kennedy’s mix of inexperience and paranoid distrust has ever held the reins at HHS. He was trained as a lawyer and has no training in biostatistics or any other research bona fides—the sorts of qualifications you’d expect from someone credibly evaluating vaccine efficacy. But the post-pandemic era has already given rise to at least one smaller-scale experiment along these lines. In Florida, vaccine policies have been overseen since 2021 by another noted skeptic of the pharmaceutical industry, State Surgeon General Joseph Ladapo. (Kennedy has likened Ladapo to Galileo—yes, the astronomer who faced down the Roman Inquisition.) Under Ladapo’s direction, the state has aggressively resisted federal guidance on COVID-19 vaccination, and its department of health has twice advised Floridians not to get mRNA-based booster shots. “These vaccines are not appropriate for use in human beings,” Ladapo declared in January. His public-health contrarianism has also started spilling over into more routine immunization practices. Last winter, during an active measles outbreak at a Florida school, Ladapo abandoned standard practice and allowed unvaccinated children to attend class. He also seemed to make a point of not recommending measles shots for any kids who might have needed them.

Jeffrey Goldhagen, a pediatrics professor at the University of Florida and the former head of the Duval County health department, believes that this vaccine skepticism has had immense costs. “The deaths and suffering of thousands and thousands of Floridians” can be linked to Ladapo’s policies, he said, particularly regarding COVID shots. But in the years since Ladapo took office, Florida did not become an instant outlier in terms of COVID vaccination numbers, nor in terms of age-adjusted rates of death from COVID. And so far at least, the state’s performance on other immunization metrics is not far off from the rest of America’s. That doesn’t mean Florida’s numbers are good: Among the state’s kindergarteners, routine-vaccination rates have dropped from 93.3 percent for the kids who entered school in the fall of 2020 to 88.1 percent in 2023, and the rate at which kids are getting nonmedical exemptions from vaccine requirements went up from 2.7 to 4.5 percent over the same period. These changes elevate the risk of further outbreaks of measles, or of other infectious diseases that could end up killing children—but they’re not unique to Ladapo’s constituents. National statistics have been moving in the same direction. (To wit: The rate of nonmedical exemptions across the U.S. has gone up by about the same proportion as Florida’s.)

All of these disturbing trends may be tied to a growing suspicion of vaccines that was brought on during COVID and fanned by right-wing influencers. Or they could be a lingering effect of the widespread lapse in health care in 2020, during which time many young children were missing doses of vaccines. (Kids who entered public school in 2023 might still be catching up.)

In any case, other vaccination rates in Florida look pretty good. Under Ladapo, the state has actually been gaining on the nation as a whole in terms of flu shots for adults and holding its own on immunization for diphtheria, tetanus, and pertussis in toddlers. Even Ladapo’s outlandish choice last winter to allow unvaccinated kids back into a school with an active measles outbreak did not lead to any further cases of disease. In short, as I noted back in February, Ladapo’s anti-vaccine activism has had few, if any, clear effects. (Ladapo did not respond when I reached out to ask why his policies might have failed to sabotage the state’s vaccination rates.)

  

If Florida’s immunization rates have been resilient, then America’s may hold up even better in the years to come. That’s because the most important vaccine policies are made at the state and local levels, Rupali Limaye, a professor and scholar of health behavior at Johns Hopkins University, told me. Each state decides whether and how to mandate vaccines to school-age children, or during a pandemic. The states and localities are then responsible for giving out (or choosing not to give out) whichever vaccines are recommended, and sometimes paid for, by the federal government.  

But the existence of vaccine-skeptical leadership in Washington, and throughout the Republican Party, could still end up putting pressure on local decision makers, she continued, and could encourage policies that support parental choice at the expense of maximizing immunization rates. As a member of the Cabinet, Kennedy would also have a platform that he’s never had before, from which he can continue to spread untruths about vaccines. “If you start to give people more of a choice, and they are exposed to disinformation and misinformation, then there is that propensity of people to make decisions that are not based on evidence,” Limaye said. (According to The New York Times, many experts say they “worry most” about this aspect of Kennedy’s leadership.)

How much will this really matter, though? The mere prominence of Kennedy’s ideas may not do much to drive down vaccination rates on its own. Noel Brewer, a behavioral scientist and public-health professor at the UNC Gillings School of Global Public Health, told me that attempts to change people’s thoughts and feelings about vaccines are often futile; research shows that talking up the value of getting shots has little impact on behavior. By the same token, one might reasonably expect that talking down the value of vaccines (as Kennedy and Ladapo are wont to do) would be wasted effort too. “It may be that having a public figure talking about this has little effect,” Brewer said.

Indeed, much has been made of Kennedy’s apparent intervention during the 2019 measles crisis in Samoa. He arrived there for a visit in the middle of that year, not long after measles immunizations had been suspended, and children’s immunization rates had plummeted. (The crisis began when two babies died from a vaccine-related medical error in 2018.) Kennedy has been linked to the deadly measles outbreak in the months that followed, but if his presence really did give succor to the local anti-vaccine movement, that movement’s broader aims were frustrated: The government declared a state of emergency that fall, and soon the measles-vaccination rate had more than doubled.

As head of HHS, though, Kennedy would have direct control over the federal programs that do the sort of work that has been necessary in Samoa, and provide access to vaccines to those who need them most. For example, he’d oversee the agencies that pay for and administer Vaccines for Children, which distributes shots to children in every state. All the experts I spoke with warned that interference with this program could have serious consequences. Other potential actions, such as demanding further safety studies of vaccines and evidence reviews, could slow down decision making and delay the introduction of new vaccines.

Kennedy would also have a chance to influence the nation’s vaccine requirements for children, as well as its safety-and-monitoring system, at the highest levels. He’d be in charge of selecting members for the Advisory Committee on Immunization Practices, which makes recommendations on vaccines that are usually adopted by the states and result in standardized insurance coverage. He’d also oversee the head of the CDC, who in turn has the authority to overrule or amend individual ACIP recommendations.

Even if he’s not inclined to squelch any determinations outright, Kennedy’s goal of giving parents latitude might play out in other ways. Brewer, who is currently a voting member of ACIP (but emphasized that he was not speaking in that capacity), said that the committee can issue several different types of rulings, some of which roughly correspond to ACIP saying that Americans should rather than may get a certain vaccine. That distinction can be very consequential, Brewer said: Shots that are made “routine” by ACIP get prioritized in doctor’s offices, for instance, while those that are subject to “shared clinical decision-making” may be held for patients who ask for them specifically. Shifting the country’s vaccination program from a should to a may regime “would destroy uptake,” Brewer told me.

Those would seem to be the stakes. The case study of vaccine-skeptical governance that we have in Florida may not look so dire—at least in the specifics. But Kennedy’s ascendancy could be something more than that: He could steer the public-health establishment off the course that it’s been on for many years, and getting back to where we are today could take more years still.

Genetic Discrimination Is Coming for Us All

The Atlantic

www.theatlantic.com › health › archive › 2024 › 11 › dna-genetic-discrimination-insurance-privacy › 680626

The news came four years ago, at the end of a casual phone call. Bill’s family had always thought it was a freak coincidence that his father and grandfather both had ALS. But at the end of a catch-up, Bill’s brother revealed that he had a diagnosis too. The familial trend, it turned out, was linked to a genetic mutation. That meant Bill might also be at risk for the disease.

An ALS specialist ordered Bill a DNA test. While he waited for results, he applied for long-term-care insurance. If he ever developed ALS, Bill told me, he wanted to ensure that the care he would need as his nerve cells died and muscles atrophied wouldn’t strain the family finances. When Bill found out he had the mutation, he shared the news with his insurance agent, who dealt him another blow: “I don’t expect you to be approved,” he remembers her saying.

Bill doesn’t have ALS. He’s a healthy 60-year-old man who spends his weekends building his dream home by hand. A recent study of mutations like his suggests that his genetics increase his chances of developing ALS by about 25 percent, on average. Most ALS cases aren’t genetic at all. And yet, Bill felt like he was being treated as if he was already sick. (Bill asked to be identified by his first name only, because he hasn’t disclosed his situation to his employer and worried about facing blowback at work too.)

What happened to Bill, and to dozens of other people whose experiences have been documented by disease advocates and on social media, is perfectly legal. Gaps in the United States’ genetic-nondiscrimination law mean that life, long-term-care, and disability insurers can obligate their customers to disclose genetic risk factors for disease and deny them coverage (or hike prices) based on the resulting information. It doesn’t matter whether those customers found out about their mutations from a doctor-ordered test or a 23andMe kit.  

For decades, researchers have feared that people might be targeted over their DNA, but they weren’t sure how often it was happening. Now at least a handful of Americans are experiencing what they argue is a form of discrimination. And as more people get their genomes sequenced—and researchers learn to glean even more information from the results—a growing number of people may find themselves similarly targeted.

When scientists were mapping the immense complexity of the human genome around the turn of the 21st century, many thought that most diseases would eventually be traced to individual genes. Consequently, researchers worried that people might, for example, get fired because of their genetics; around the same time, a federal research lab was sued by its employees for conducting genetic tests for sickle-cell disease on prospective hires without their explicit consent. In 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law, ensuring that employers couldn’t decide to hire or fire you, and health insurers couldn’t decide whether to issue a policy, based on DNA. But lawmakers carved out a host of exceptions. Insurers offering life, long-term-care, or disability insurance could take DNA into account. Too many high-risk people in an insurance pool, they argued, could raise prices for everyone. Those exceptions are why an insurer was able to deny Bill a long-term-care policy.

[Read: The loopholes in the law prohibiting genetic discrimination]

Cases like Bill’s are exactly what critics of the consumer-genetic-testing industry feared when millions of people began spitting into test tubes. These cases have never been tallied up or well documented. But I found plenty of examples by canvassing disease-advocacy organizations and social-media communities for ALS, breast cancer, and Huntington’s disease. Lisa Schlager, the vice president of public policy at the hereditary-cancer advocacy group FORCE, told me she is collecting accounts of discrimination in life, long-term-care, and disability insurance to assess the extent of the problem; so far, she has about 40. A man Schlager connected me with, whose genetic condition, Lynch syndrome, increases the risk for several cancers, had his life-insurance premium increased and coverage decreased; several other providers denied him a policy altogether. Kelly Kashmer, a 42-year-old South Carolina resident, told me she was denied life insurance in 2013 after learning that she had a harmful version of the BRCA2 gene. One woman I found via Reddit told me she had never tested her own DNA, but showed me documents that demonstrate she was still denied policies—because, she said, her mom had a concerning gene. (Some of the people I spoke with, like Bill, requested not to be identified in order to protect their medical privacy.)

Studies have shown that people seek out additional insurance when they have increased genetic odds of becoming ill or dying. “Life insurers carefully evaluate each applicant’s health, determining premiums and coverage based on life expectancy,” Jan Graeber, a senior health actuary for the American Council of Life Insurers, said in a statement. “This process ensures fairness for both current and future policyholders while supporting the company’s long-term financial stability.” But it also means people might avoid seeking out potentially lifesaving health information. Research has consistently found that concerns about discrimination are one of the most cited reasons that people avoid taking DNA tests.

For some genetically linked diseases, such as ALS and Huntington’s disease, knowing you have a harmful mutation does not enable you to prevent the potential onset of disease. Sometimes, though, knowing about a mutation can decrease odds of severe illness or death. BRCA mutations, for example, give someone as much as an 85 percent chance of developing breast cancer, but evidence shows that testing women for the mutations has helped reduce the rate of cancer deaths by encouraging screenings and prophylactic surgeries that could catch or prevent disease. Kashmer told me that her first screening after she discovered her BRCA2 mutation revealed that she already had breast cancer; had she not sought a genetic test, she may have gotten a policy, but would have been a much worse bet for the insurer. She’s now been cancer-free for 11 years, but she said she hasn’t bothered to apply for a policy again.

[Read: Remember that DNA you gave 23andMe?]

Even employers, which must adhere to GINA, might soon be able to hire or fire based on certain genetic risk factors. Laura Hercher, a genetic counselor and director of research at the Sarah Lawrence College Human Genetics Program, told me that some researchers are now arguing that having two copies of the APOE4 mutation, which gives people about a 60 percent chance of developing Alzheimer’s, is equivalent to a Stage Zero of the disease. If having a gene is considered equivalent to a diagnosis, do GINA’s protections still apply? The Affordable Care Act prevents health insurers from discriminating based on preexisting conditions, but not employers and other types of insurers. (The ACA may change dramatically under the coming Trump presidency anyway.) And the Americans With Disabilities Act might not apply to the gray area between what might be viewed as an early manifestation of a disease and the stage when it’s considered a disability. FORCE and other advocacy groups—including the ALS Association and the Michael J. Fox Foundation—as well as members of the National Society of Genetic Counselors, are working in a few states to pass laws that close gaps left by GINA, as Florida did in 2020, but so far they have been mostly unsuccessful.

Genetic testing has only just become common enough in the U.S. that insurers might bother asking about it, Hercher said. Recently, groups like Schlager’s have been hearing more and more anecdotes. “People are so worried about genetic discrimination that they are failing to sign up for research studies or declining medically recommended care because of the concerns of what could happen to their insurance,” Anya Prince, a professor at the University of Iowa College of Law, told me. Carolyn Applegate, a genetic counselor in Maryland, told me that when patients come to her worried about a hereditary disease, she typically advises them to line up all the extra coverage they might need first—then hand over their DNA to a lab.

So far, these unintended consequences of genetic testing seem to be manifesting for people with risk for rare diseases linked to single genes, which, combined, affect about 6 percent of the global population, according to one estimate. But the leading killers—heart disease, diabetes, and the like—are influenced by a yet unknown number of genes, along with lifestyle and environmental factors, such as diet, stress, and air quality. Researchers have tried to make sense of this complex interplay of genes through polygenic risk scores, which use statistical modeling to predict that someone has, say, a slightly elevated chance of developing Alzeheimer’s. Many experts think these scores have limited predictive power, but “in the future, genetic tests will be even more predictive and even more helpful and even more out there,” Prince said. Already, if you look deep enough, almost everyone’s genome registers some risk.

[Read: What happens when you’re convinced you have bad genes]

In aggregate, such information can be valuable to companies, Nicholas Papageorge, a professor of economics at Johns Hopkins University, told me. Insurers want to sell policies at as high a price as possible while also reducing their exposure; knowing even a little bit more about someone’s odds of one day developing a debilitating or deadly disease might help one company win out over the competition. As long as the predictions embedded in polygenic risk scores come true at least a small percentage of the time, they could help insurers make more targeted decisions about who to cover and what to charge them. As we learn more about what genes mean for everyone’s health, insurance companies could use that information to dictate coverage for ever more people.

Bill still doesn’t know whether he will ever develop ALS. The average age of onset is 40 to 60, but many people don’t show symptoms until well into their 70s. Without long-term-care insurance, Bill might not be able to afford full-time nursing care if he someday needs it. People who do develop ALS become unable to walk or talk or chew as the disease progresses. “Moving people to the bathroom, changing the sheets, changing the bedpans,” Bill said—“I dread the thought of burdening my wife with all of those things.”

Cases like Bill’s could soon become more common. Because scientists’ understanding of the human genome is still evolving, no one can predict all of the potential consequences of decoding it. As more information is mined from the genome, interest in its secrets is sure to grow beyond risk-averse insurers. If consumer-facing DNA-testing companies such as 23andMe change their long-standing privacy policies, go bankrupt, or are sold to unscrupulous buyers, more companies could have access to individuals’ genetic risk profiles too. (23andMe told me that it does not share customer data with insurance companies and its CEO has said she is not currently open to third-party acquisition offers.) Papageorge told me he could imagine, say, scammers targeting people at risk for Alzheimer’s, just as they often target older people who may fall for a ploy out of confusion. All of us have glitches somewhere in our genome—the question is who will take advantage of that information.