Parkinson's support group hails law requiring a federal plan for it

A group session held by Parkinson's in Motion, in London (Image from WYMT-TV)

Kentucky Health News

The leader of a Kentucky support group for sufferers of Parkinson's disease is hailing President Biden's Tuesday signing of a law that requires the Department of Health and Human Services to develop, and evaluate progress on, a plan to address the disabling neurological disorder.

Jane Rice Williams, executive director of Parkinson’s in Motion, a London-based group, told Hazard's WYMT-TV that she hopes the National Plan to End Parkinson's Act will bring more attention to the disease.

“Parkinson’s is the fast growing neurological condition on the planet, and it’s still so under-funded,” Williams said. But she added that her group has spread awareness across the region.

“People here have been diagnosed since coming to our meetings and finding out what Parkinson’s is, and they think, ‘Well, maybe that is what my dad has, or maybe that’s what my mother has.’ And they’re able to get a diagnosis because of knowledge,” she said.

“But you can’t sustain all of that without funding. There’s so many people out there suffering that have no clue that they have Parkinson’s. Every time we turn around and think we’re gonna provide such and such, we need funding.”

Beyond funding, she said her organization wants to “try and get them in the proper exercise, teach them proper nutrition, get them in Parkinson’s communities” where they can get group support.

Your Local Epidemiologist says gun violence is public-health issue

Graph from New England Journal of Medicine; Annotated by Your Local Epidemiologist

OPINION By Katelyn Jetelina
Your Local Epidemiologist

On June 24, U.S. Surgeon General Vivek Murthy declared gun violence a public-health crisis. Many narratives immediately pushed back that this isn’t public health’s lane.

Let me say this loud and clear: Gun violence is absolutely in the purview of public health. And until society accepts it as such, we will continue to lose tens of thousands of Americans annually, leaving behind massive ripples in the community. Thankfully, momentum is changing.

What is public health? It’s broader than you might think. Public health—also called population health—came into the limelight with Covid-19, but it’s much broader than a pandemic or infectious diseases. It is the science of protecting and improving the health of people and their communities.

Public health is everywhere—think seatbelts, non-smoking areas, vaccines, airbags, clean drinking water, cleaner indoor air, food security, and cancer prevention. Experts are in health departments, nonprofits, government agencies, academic institutions, and the private sector. That’s because public health is most effective when combining science, education, policy, advocacy, and innovation.

Epidemiology, one subset of public health, is charged with finding patterns: Who is impacted? What predicts certain health outcomes? Because if it’s predictable, it’s preventable.

Violence epidemiology was born out of a case study a few decades ago, which showed that clusters of cholera in Bangladesh mirrored clusters of gun violence in Chicago. This meant gun violence wasn’t random; certain factors predispose a person or community. The field has grown to study suicide, child abuse, domestic violence, and, yes, gun violence.

Gun violence patterns—who are being impacted, where, and why—have slowly emerged, providing hints about tangible and effective public health solutions. For example:

• Firearm injuries are the leading cause of death in children. It surpassed motor vehicle crashes in 2020 for the first time.
• 2 out of 5 homes have at least one firearm.
• 4.6 million kids live with unlocked, loaded gun.
• 1 in 3 youth suicides and unintentional deaths can be prevented by securing guns.
• 8 out of 10 children that used a firearm say it belonged to a family member.

These patterns suggest safe storage and education for parents, for example, could (and are) move the needle.

Suicides account for most gun deaths, followed by homicides. This is why some states have passed bipartisan legislation, like red-flag laws, to temporarily remove firearms from people who have been deemed a threat to themselves. It’s estimated one suicide is prevented for every 10–20 red flag orders issued.

Cause and risk are not uniform. Gun injuries and deaths differ by race/ethnicity, physical location, age, and many other factors. This suggests who and how we engage with matters to make an impact.

There are ripple effects. A single neighborhood murder can impact as many as 200 people in a community. Randomized control studies have shown that community-level interventions, like replacing vacant spaces with green spaces, break cycles of violence.

Finding answers has been a slow crawl. Although we’ve found some patterns, we’ve only scraped the surface. Progress has been plagued by an unfortunate series of events.

Rewind to 1993. A famous study published in the New England Journal of Medicine found that having a gun in the home increased the risk of homicide in the home. This set off a political domino effect, and three years later, Congress inserted the Dickey Amendment into the CDC spending bill. The provision stated, “None of the funds made available for injury prevention and control at the Centers for Disease Control and Prevention may be used to advocate or promote gun control.” The language was unclear; the epidemiologist on the 1993 study famously said, “Precisely what was or was not permitted under the clause was unclear. However, no federal employee was willing to risk his or her career or the agency's funding to find out. Extramural support for firearm injury-prevention research quickly dried up.”

This set gun violence research back decades, as it was completely reliant on nonprofits and philanthropy support. This is helpful but not enough to match the scope of the problem.

But, momentum is shifting. We see this from several angles:

• Engagement from the bottom up. A plethora of public-health experts have partnered with groups directly impacted by gun violence. For example, working with gun owners and gun ranges to curb suicide or communities (see Cure Violence) to build solutions.
• Funding for research. In 2020 —for the first time in 25 years—our federal budget included $25 million for the CDC and NIH to research reducing gun-related deaths and injuries. This is a start, but to be clear, it’s estimated that we need $1.4 billion to curb this epidemic. (For context, NIH gets $6.56 billion allocated for cancer research.)
• State and federal initiatives. For example, the Office for Violence Prevention was established in 2023 to focus on key legislative actions. You may be surprised to hear that many policies have bipartisan support. Earlier this month, the office hosted 160 hospital executives and leaders to discuss the importance of using health system data to better understand patterns.

Gun violence is absolutely in the public-health lane. This is what we do. We’ve been able to do unimaginable things and save millions of lives by approaching problems with a public-health lens, like cigarettes and motor-vehicle crashes. Public health can help reduce gun violence in the U.S., and we will. But only at the speed at which society recognizes and supports it.

Dr. Bruce Scott, Louisville otolaryngoloist, becomes president of American Medical Association, says he's 'ready to fight' for docs

AMA President Bruce Scott, M.D.

Kentucky Health News

Dr. Bruce A. Scott, an ear, nose and throat specialist from Louisville, was sworn in Tuesday, June 11, as the 179th president of the American Medical Association, the nation’s largest organization of physicians.

“I became a physician to care for patients, and we all know that’s getting tougher every day,” Scott said in his inaugural address. “Our health-care system should help physicians provide good care, not get in the way!” He said “The AMA does for physicians and our patients what we as individual physicians cannot do.”

Scott said “two decades of spiraling Medicare payment cuts and ever-increasing administrative burdens” have increased burnout among doctors to the point that “almost two-thirds of physicians show signs of burnout. One-third plan to reduce their hours. One in five physicians are hoping to stop practicing or retire in the next two years.

“We can’t afford to lose even one more doctor! As a physician in an independent practice, I live these issues every day. I see my colleagues struggling. I feel the urgency of the moment. I will bring that urgency to my presidency. You better believe I’m ready to fight.” 

Scott has been president of his state and county medical associations and remains on their boards. "As a leader of these associations, he has fought for access to care for vulnerable populations, improvement in public health and reduction of administrative burdens in health care," an AMA news release said. He joined the AMA Board of Trustees in 2015 and was speaker of the AMA House of Delegates starting in 2019.

Board-certified in both otolaryngology and facial plastic surgery, Scott is president of Kentuckiana Ear, Nose & Throat, a six-physician independent private practice group, medical director of Premier Ambulatory Surgery Center, and holds a clinical appointment at the University of Louisville medical school.

Scott is a director of Health2047, the AMA’s Silicon Valley-based subsidiary that finds and funds tech-enabled commercial health-care enterprises. "In this role he is helping shape the future of medicine to empower patients and healthcare providers with meaningful and measurable impact," the release said.

He has written many articles for medical journals, as well as chapters in otolaryngology textbooks, He earned his undergraduate degree at Vanderbilt University, completed his education and residency at the University of Texas.

In his inaugural address, Scott told how he suffered a penetrating hand injury when he was 12 and a surgeon told his parents "that I was unlikely to ever regain normal use of my hand, and I would probably lose at least two fingers," but Dr. Joseph Kutz, Louisville's world-renowned hand surgeon, "saved my hand and spared my fingers, forever changing the course of my life -- and, although I didn’t know it at the time, putting me on the path that led to tonight. To this stage, to this incredible moment. I am a surgeon, using this very hand, because of a doctor."

Scott and his wife Christy have three adult children. He is the second Kentuckian in recent years to be AMA president; Dr. Steven Stack, the state public-health commissioner sicne January 2020, was president in 2016-17.

Fauci, facing Congress for first time since retirement, distances himself from aide who used personal emails for business

Dr. Anthony Fauci (Photo by Francis Chung, Politico)

Kentucky Health News

Dr. Anthony Fauci defended his actions during the Covid-19 pandemic before House lawmakers Monday and distanced himself from an aide accused of misconduct, Politico's Carmen Paun reports.

Fauci pushed back on claims by Republicans on the House Select Subcommittee on the Coronavirus Pandemic that he tried to squelch the theory that the virus spilled over from a lab in Wuhan, China.

Fauci said that the theory isn’t a conspiracy theory, and that he has kept an open mind on the pandemic's origins, but has endorsed a theory that the disease came from an animal.

He said the research his agency funded at the lab couldn’t have created Covid. The Department for Health and Human Services has stripped the EcoHealth Alliance, the U.S. research group that collaborated on virus studies with Wuhan, and its president of federal funding.

Fauci, 83, was director of the National Institute of Allergy and Infectious Diseases from 1984 to 2022, and chief medical adviser to President Biden from 2021 to 2022

Democrats and Republicans on the panel recently blasted longtime Fauci adviser David Morens, whom HHS put on leave for using personal email for official business. Emails the subcommittee released last month show Morens trying to shield correspondence.

In his first public Capitol Hill testimony since leaving the federal government, Fauci said Morens wasn’t part of his inner circle. “Despite his title, and even though he was helpful to me in writing scientific papers, Dr. Morens was not an adviser to me on institute policy or other substantive issues,” Fauci said.

Comer and committee grill FDA chief about handling of vapes

U.S. Rep. James Comer, R-Ky.
(AP photo by Alex Brandon)

Kentucky Health News

Rep. James Comer of Kentucky and other House members "grilled FDA Commissioner Robert Califf about why the agency has failed to swiftly assess product applications for e-cigarettes while illicit products from China flood store shelves," Luke Zarzecki reports for Inside Health Policy. "Califf defended FDA's approach by saying the agency is not resourced to deal with the flood of millions of applications for vaping products."

Califf appeared Thursday at a hearing of the Comer-chaired House Committee on Oversight & Accountability that last almost five hours. "We covered topics from seafood inspection, all the way to every other topic that I think could be imaginable," Comer told Zoey Becker of FiercePharma.

"Multiple lawmakers blamed FDA’s failure to quickly approve e-cigarette and vaping products from the United States for the proliferation of illegal imports, Zarzecki reports, quoting Comer: “FDA’s failure to regulate has allowed unsafe and illicit products to proliferate.”

"Califf said FDA would be more equipped to deal with illicit products if Congress approved the agency’s request to require e-cigarette manufacturers to pay user fees," Zarzecki reports. "He said FDA will not approve applications for vaping products unless they demonstrate the product will not contribute to nicotine addiction among children and youth." He said no one expected 26 million applications, and FDA has requested more staff to address the backlog.

The agency has asked the Supreme Court to review an appeals court’s ruling that it consider every marketing application for flavored e-cigarette products individually, "rather than rejecting them en masse because of their impact on youth smoking," Zarzecki notes.

"Public health groups have also sued the FDA and HHS over delaying a ban on menthol cigarettes and flavored cigars, and a spokesperson for FDA noted the rule is pending at the White House Office of Management and Budget."

FDA Commissioner Robert Califf (AP photo)

Califf said that in 2023, FDA “issued warning letters to more than 120 manufacturers and distributors and more than 400 retailers; filed over 40 civil money penalty complaints against manufacturers and over 65 against retailers; and collaborated with our federal partners at the U.S. Customs and Border Protection to seize approximately 1.4 million units of unauthorized e-cigarette products with an estimated retail value of more than $18 million; among other actions.”

"Comer criticized FDA for not seizing more illegal products from retailers," Zarzecki reports, and said the agency's approach to e-cigarettes is not what Congress had in mind. Comer said, “Those seeking to play by the rules don’t even know what the rules are because FDA won’t tell them, or FDA won’t put information out, or they will put information out, but they change it.”

Califf said vaping and electronic cigarettes came along after Congress passed the Tiobacco Control Act, under which the FDA operates.

Comer, who represents the state's First Congressional Distict, also criticized FDA for “failing to do the bare minimum to carry out its core mission” under the Biden administration. He said “a pattern of issues” show the agency “appears consistently unprepared for crises.”

He noted that FDA inspections of foreign manufacturing plants, where many drugs sold in the U.S. are made, haven't returned to pre-pandemic levels. He said the agency inspected 79 percent fewer foreign plants in 2022 than it did in 2019.

Califf conceded, “We need to pick up the pace.” He said the FDA recently “completely" reworked its inspection system in India to address problems there. The agency is converting its Office of Regulatory Affairs into an Office of Inspections and Investigations, "reassigning some 1,500 staffers to related roles."

Guthrie warns making telehealth expansion permanent must be paid for; costs uncertain, but projected to be several billion dollars

Kentucky Health News

If telehealth services are to remain expanded as they were in the pandemic, Congress must offset the cost, U.S. Rep. Brett Guthrie of Bowling Green said in opening a House subcommittee hearing Wednesday.

“Virtually overnight, our health-care system underwent a significant transition,” said Guthrie, a Republican who represents the 2nd Congressional District and chairs the health subcommittee of the House Energy and Commerce Committee, according to a press release from the committee.

“Seniors were allowed to use telehealth across the country and could now access their health-care providers from the comfort of their home. Additionally, the number of health care services Medicare would cover if performed through telehealth increased from 118 to over 260.

“Restrictions such as requiring seniors to have an established pre-existing relationship with a health-care provider to receive mental health services through telehealth were waived. Allowing patients to consult with a provider through a simple audio-only phone call if an audio-visual connection wasn’t available.”

All those things were a big help to rural communities, Guthrie said, so Congress has extended them through Dec, 31. But he added that before they can be extended again or made permanent, some problems need to be addressed.

“I want to remind my colleagues that the previous extension was estimated by the Congressional Budget Office to increase costs to the Medicare program by over $2 billion,” Guthrie said. “Making these authorities permanent is likely to cost much more than a short-term extension, and we want to make sure that whatever we move out of committee is paid for and is delivering the best value for seniors. I think that this committee can work together, to move legislation making sure seniors have access to telehealth when they want it while also including appropriate program integrity measures, addressing the costs of such access to the program.”

Politico Pulse reports, “Generally, lawmakers seemed willing to accept higher costs to expand access to virtual care.” Rep. Cathy McMorris Rodgers (R-Wash.), chair of the full committee, said extending telehealth rules would be a “significant investment” but “We can’t afford to go backwards.” Pulse notes, "Harvard researcher Ateev Mehrotra told lawmakers that expanded telehealth is associated with a 'modest' increase in spending but also improved outcomes, particularly in mental health."

Guthrie largely dismissed concerns about increases in waste, fraud, and abuse from telehealth. “It appears that telehealth can be used to deliver care without actually raising those serious concerns. According to the Office of Inspector General, of the over 700,000 providers they studied who provided telehealth care during the pandemic, less than 2,000 warranted further scrutiny resulting from their telehealth billing practices, and mostly because they charged facility fees and for the actual telehealth visit.”

The full committee's ranking Democrat, Rep. Frank Pallone of New Jersey, acknowledged the budget implications of extending telehealth, but noted that the CBO has not estimated the cost yet. "I would like to better understand the offsets for these proposals," he said, "and want to ensure that it would not result in significant funding cuts to the Medicare program or raise health care costs for seniors."

Pallone also said, "I believe that any further expansions of telehealth flexibilities in Medicare must meaningfully increase patient access to care and ensure high quality care for seniors.  . . . Congress must ensure that additional expansions of telehealth policies do not limit access to in-person care. It is important that we preserve patient choice and that Medicare beneficiaries continue to have access to high quality in-person care and robust consumer protections, including network adequacy standards."

The top-ranking Democrat on the subcommittee, Rep. Anna Eshoo of California, voiced concern about the health-care industry “gaming” telehealth to make it into a “cash cow.”

Republicans talk about making Obamacare better, not repealing it, so it is 'becoming a politically untouchable part' of the safety net

Washington Post graph from Kaiser Family Foundation polling data

Kentucky Health News

"A law once derided as 'Obamacare' and demonized as a big-government power grab is becoming a politically untouchable part of the American safety net, like Social Security and Medicare before it," writes Dan Diamond, lead health reporter for The Washington Post.

As evdience, Diamond cites President Joe Biden's "celebration" of the Patient Protection and Affordable Care Act as he runs for re-election, and former president Donald Trump's "grudging acceptance" of the 2010 law: he no longer wants to repeal it, just "make it better."

In Kentucky, where then-Gov. Steve Beshear embraced Obamacare by expanding Medicaid to the point that it covers every third person in the state, Republicans have realized its political appeal and have not pushed to replicate the failed efforts of Republican Matt Bevin, governor in 2015-19, to impose work requirements on Medicaid beneficiaries.

Nationally, "More than 45 million people now rely on the ACA and its provisions for health coverage, according to a federal report released last week, and the law’s protections for people who have pre-existing conditions have transformed many Americans’ experience of health care. Yet for nearly a decade, Republicans like Trump successfully ran on pledges to 'repeal Obamacare' — and Democrats sometimes ran from it, scarred by the law’s bumpy rollout, the constant political attacks and the struggle to communicate its benefits," Diamond notes. "But when Trump and his Republican allies nearly repealed the ACA — falling one senator short in July 2017 — it sparked passionate efforts to defend it and catalyzed new, long-lasting support."

Between the time Trump was elected and took office, outgoing Health and Human Servcies Secretary Sylvia Burwell "rolled out a 70-day crash plan to shore up support for the health law, developing targeted maps to show members of Congress how the law was affecting their communities," Diamond reports. "She worked the phones to reach GOP lawmakers and governors, seeking promises that they would not cut the protections for people with pre-existing conditions — one of the most beloved parts of the law, and one of the most integral. Burwell knew preserving that provision would complicate the ability to repeal the broader ACA. . . . Ultimately, Sen. John McCain (R-Ariz.) blocked the repeal in a dramatic late-night vote," killing a so-called "skinny repeal" bill sponsored by Republican Leader Mitch McConnell of Kentucky.

As Sen. Mitch McConnell watched, Sen. John McCain turned thumbs down and voted "no" on the bill.

"Today, more Americans than ever have health coverage, with about 21 million insured through the ACA’s private health plans, up from 12 million when Biden took office, according to a federal report released last week," Diamond reports. "Another 23 million gained coverage through the law’s expansion of the Medicaid program."

Chair of U.S. Senate health committee demands maker of weight-loss drugs, most popular in Kentucky, cut their prices by two-thirds

Axios Visuals map, adapted by Kentucky Health News; click it to enlarge.

Sen. Bernie Sanders of Vermont, who chairs the U.S. Senate's Health, Education, Labor and Pensions Committee says the maker of two popular diabetes and weight-loss drugs Ozempic and Wegovy should lower their list prices of “to no more than what they charge for this drug in Canada,” The Washington Post reports.

Sanders, an independent who votes with Democrats, "is demanding that Novo Nordisk slash the prices of its blockbuster drugs Ozempic and Wegovy, citing a new study on the manufacturing costs of the diabetes and weight-loss medications," the Post reports.

Kentucky leads the nation in the percentage (about 2.1%) of residemts who have received a prescription for one of the new drugs created to fight obesity and diabetes, which can also aid weight loss.

"Researchers found that a month’s supply of semaglutide — the active ingredient in both drugs — could be manufactured for an estimated 89 cents to $4.73," the Post reports, but "Novo Nordisk charges $935.77 for four weekly injections of Ozempic in the United States, while it costs about $300 per month out-of-pocket in Canada."

In response, a Novo Nordisk spokesperson didn’t address manufacturing costs but said the Danish company offers several ways to help patients and "supports changes in policy to improve patient affordability and access for those living with chronic diseases," the Post reports.

Contrary to Trump's musings, McConnell says efforts to repeal the 2010 Patient Protection and Affordable Care Act are 'largely over'

Senate Republican Leader Mitch McConnell waited for President Biden to arrive for the State of the Union speech Thursday, March 7, in the House chamber. (Pool photo by Shawn Thew, via Associated Press)

Kentucky Health News

Obamacare, now into its second decade, is pretty much here to stay.

So says Senate Republican Leader Mitch McConnell of Kentucky, contradicting former President Trump’s comments that he is still looking at ways to repeal and replace the 2010 law.

“We had a fight over that a few years ago,” McConnell told reporters Tuesday, referring to how Republicans fell short of doing that in 2017 because a few of them opposed the reversal.

“If he can develop a base for revisiting that issue, obviously we’d take a look at it, but it seems to me that’s largely over,” McConnell said of the repeal-and-replace effort, which never had a replacement measure.

McConnell's statement "gave voice to the view shared by many Republican senators that the Affordable Care Act, also known as Obamacare, will be the law of the land for the foreseeable future," writes Alexander Bolton of The Hill.

McConnell endorsed Trump last week, despite their serious differences over more than three years. He said Tuesday, “I’m going to leave the issue development in the presidential campaign up to the campaign.”

Trump said he is “seriously looking at alternatives” if he is elected and Republicans keep control of the House and regain control of the Senate.

“The cost of Obamacare is out of control, plus, it’s not good Healthcare. I’m seriously looking at alternatives,” Trump wrote on his Truth Social site last year. “We had a couple of Republican senators who campaigned for six years against it, and then raised their hands not to terminate it. It was a low point for the Republican Party, but we should never give up!”

Trump exaggerated or misstated the campaign positions of Sens. Susan Collins (R-Maine), Lisa Murkowski (R-Alaska) and the late Sen. John McCain (R-Ariz.), who "voted with Democrats to defeat a narrowed-down proposal to repeal the Affordable Care Act without putting a new health care subsidy program into effect," Bolton notes.

President Biden defended the law during last week's State of the Union speech.

“Over 100 million of you can no longer be denied health insurance because of a preexisting conditions. But my predecessor and many in this chamber want to take — the prescription drug away by repealing the Affordable Care Act. I’m not going to let that happen. We stopped you 50 times before, and we’ll stop you again.”

The main impact of the law in Kentucky has been the expansion of Medicaid to households with annual incomes up to 138 percent of the federal poverty threshold. In February, 1.56 million Kentuckians, more than a third of the state's population, were enrolled in the federal-state program. For details, with county-by-county numbers, go to https://www.chfs.ky.gov/agencies/dms/stats/KYDWMMCC20240215.pdf.

There is evidence that social media hurt teens' mental health, but it's not definitive; what limits would be reasonable? Some ideas.

Meta CEO Mark Zuckerberg speaks to the audience of a Senate Judiciary Committee hearing on the dangers of child sexual exploitation on social media. (Photo by Anna Moneymaker, Getty Images)

By Katelyn Jetelina and Jacqueline Nesi
Your Local Epidemiologist

Strong bipartisan statements came out of a congressional hearing yesterday about the harms of social media use among children and teens. Parents of kids harmed by social media showed up in immense force.

“You have blood on your hands.”— Sen. Lindsey Graham to five social media CEOs.

“I’m sorry for everything you have all been through.”— Mark Zuckerberg to parents in the audience.

Is social media dangerous for children and teens? And, if so, what are our options?

Here is the nuanced public health data that (hopefully) congressmen/women are using to (hopefully) make meaningful and needed change. But, as we know by now, policy isn’t always based on science.

This was published eight months ago, and some things have changed since. As a parent, I still root for Option #4.

This post contains sensitive information, including a discussion of suicide. If you are in need of help, there is an abundance of resources on the National Suicide Prevention Hotline website, which includes an anonymous chat function and a direct line at 988.

Protecting youth from the potential negative mental-health effects of social media is front and center in the mass media, in conversations around dinner tables, and in federal- and state-level bills.

Is the teen mental health crisis a real thing? Yes. Rates of mental health problems have continually increased among young people over the past 15 years, regardless of how you measure it:

In 2021, 42% of U.S. high school students reported “persistent feelings of sadness or hopelessness,” up from 28% in 2011. The increase was especially dramatic among girls.

According to diagnostic measures (structured interviews by a trained professional), depression has increased 7.7% in U.S. teens—and 12% among girls—between 2009 and 2019.

According to U.S. death certificates, suicide rates among youth ages 10-14 increased 139% for girls and 70% for boys since 2012. However, this is a bit difficult to interpret given low the rates to begin with for girls.

Is this rise due to social media? Teens use social media. A lot. Almost one in five teens use YouTube “almost constantly.” Nearly half of teens use TikTok (48%) and Snapchat (44%) several times per day. And the total hours of use have increased in recent years among teens.

But using social media doesn’t necessarily equate to mental-health problems. Correlation doesn’t always equal causation. And, to make things more complicated, there are harms and benefits of social media.

Harms of social media: We have a lot of correlational evidence, and some—but not much—causal evidence of the harms of social media on teens' mental health.

Correlational studies ask teens how much time they’re spending on social media, and ask them about mental health. In general, these point to weak but statistically relevant correlations between social media use and lower teen well-being.

In terms of causal evidence, we have a couple of studies:

Some studies randomly assigned people (both adults and teens) to stop using social media (and others not to stop) and then evaluated their well-being. The results of these studies are mixed. Variability seems to depend on the details of the design: How long did they stop using social media? Did they “detox” completely or just reduce the time spent? What are they using social media for?

Other studies have taken advantage of circumstances that naturally occurred in the world to mimic an experimental design. One study ​​looked at when Facebook was introduced on different college campuses (which varied randomly) and found that after Facebook showed up, rates of mental-health concerns increased. A few others (like this and this) look at the introduction of high-speed Internet in different areas and found associations with poorer mental health after its introduction, but these studies do not address social media specifically.

What is clear is that we need more research with more rigorous designs.

Benefits of social media: Competing with these harms are studies that show social media have benefits for mental health, too. Teens report that social media are important for:

• Helping them stay connected with friends
• Meeting like-minded peers
• Exploring their interests
• Learning
• Discovery

These benefits can be especially important for those who may be socially vulnerable in their offline lives, such as LGBTQ+ youth.

What else could explain it? Assessing causality means understanding what other factors may also explain the rise of mental illness among teens. A few alternative explanations have been proposed:

• Rising income inequality
• Wars
• Violence and access to firearms (suicides)
• Global financial crisis
• Racial inequality
• Academic and social pressures
• Political views on current events
• Climate change
• The opioid epidemic
• Unhelpful narratives around mental health

Of course, many of these explanations may be intertwined with and amplified by social media, but the short answer is that we likely can’t blame social media alone. Mental health is complicated, and there is unlikely to be a single, simple explanation for a large-scale phenomenon like this one.

So, what should we do about it? We’ve got a few options:

Option 1: Do nothing until research is “settled” on the issue before taking legislative action. Unfortunately, this may require a “burden of proof” that is rarely, if ever, established in psychology research. In this case, some evidence of harm, even if imperfect, may need to be enough to drive change.

Option 2: Put it on the parents. Parents certainly play a hugely important role in teens’ relationships with social media. Evidence supports parents’ active involvement in kids’ digital lives through ongoing conversations, reasonable limits, and appropriate monitoring. But can (and should) they manage it alone? If large-scale policy changes create safer social media platforms, individual disadvantages are minimized.

Option 3: Ban it among minors. Some states, such as Arkansas and Utah, have passed bills that limit social media use. In one case (Florida), it’s banned among kids under 16.

Option 4: Put reasonable protections in place. Social media is probably more like cars than drugs. We want protections in place (seatbelts, airbags, drivers’ ed), but an outright ban may go too far. Some options include: raising the minimum age from 13 to 15 or 16; requiring age verification of some kind; limiting recommendations of harmful or problematic content; limiting overall time spent (such as via forced “breaks” or overall time limits); and limiting targeted advertising.

 
Bottom line: We have some evidence that social media is playing a role in the teen mental-health crisis, but that evidence is not definitive. And social media can play a positive role, too. It is highly unlikely that social media as a whole are the only cause of mental illness among children. We can certainly take steps to make social media a healthier place, but if we truly want to support teens’ mental health, this is only the start.

If subpoenaed, pharmacy chains hand over customers' private medical information; lawmakers say warrants should be required

ECommerce360 graphic; other chains are involved.

"The nation’s largest pharmacy chains have handed over Americans’ prescription records to police and government investigators without a warrant, a congressional investigation found, raising concerns about threats to medical privacy," reports Drew Harwell of The Washington Post. "Though some of the chains require their lawyers to review law enforcement requests, three of the largest — CVS Health, Kroger and Rite Aid, with a combined 60,000 locations nationwide — said they allow pharmacy staff members to hand over customers’ medical records in the store."

Sen. Ron Wyden of Oregon and Reps. Pramila Jayapal of Washington and Sara Jacobs of California, all Democrats, revealed the policy in a letter Monday to Health and Human Services Secretary Xavier Becerra. They investigated the practice "after the Supreme Court’s decision last year in Dobbs v. Jackson Women’s Health Organization ended the constitutional right to abortion," Harwell reports. In Kentucky, the legislature has banned abortion except to save the woman's life or prevent serious imparment of a life-sustaining organ.

"Pharmacies’ records hold some of the most intimate details of their customers’ personal lives, including years-old medical conditions and the prescriptions they take for mental health and birth control," Harwell notes. "Because the chains often share records across all locations, a pharmacy in one state can access a person’s medical history from states with more-restrictive laws. Carly Zubrzycki, an associate professor at the University of Connecticut law school, wrote last year that this could link a person’s out-of-state medical care via a 'digital trail' back to their home state."

Officials with eight large pharmacy chains — Walgreens Boots Alliance, CVS, Walmart, Rite Aid, Kroger, Cigna, Optum Rx and Amazon Pharmacy — told congressional investigators that they required only a subpoena from law enforcement, not a warrant issued by a judge, to share the records. The lawmakers said employees face “extreme pressure to immediately respond.” Harwell notes, "To obtain a warrant, law enforcement must convince a judge that the information is vital to investigate a crime."

The senators and representatives asked Becerra to strengthen HIPAA’s rules and make pharmacies insist on a warrant, noting that the tech industry did likewise a decade ago.

The companies told the investigators that they get "tens of thousands of legal demands every year, and that most were in connection with civil lawsuits," Harwell reports. "It’s unclear how many were related to law enforcement demands, or how many requests were fulfilled. Only one of the companies, Amazon, said it notified customers when law enforcement demanded its pharmacy records unless there was a legal prohibition, such as a gag order, preventing it from doing so, the lawmakers said."

The Health Insurance, Portability and Accountability Act allows Americans to ask drug companies if they’ve disclosed their information, "but very few people do," Harwell reports. "CVS, which has more than 40,000 pharmacists and 10,000 stores in the United States, said it received a 'single-digit number' of such consumer requests last year."

CVS, the largest pharmacy chain by prescription revenue, told Harwell that most subpoenas include a directive that the information remain confidential, and if it does not, the company considers “on a case-by-case basis whether it’s appropriate to notify the individual.”

"A Walgreens spokesman said the company’s law enforcement process follows HIPAA and other applicable laws," Harwell reports. "A Walmart spokeswoman said the company takes its 'customers’ privacy seriously as well as our obligation to law enforcement.' An Amazon spokeswoman said that the company cooperates with law enforcement requests as required. . . . Rite Aid declined to comment. The other companies did not respond to requests for comment."

Carmel Shachar, a Harvard Law School professor who studies health law and policy, said pharmacies have a “ton of sensitive data” and pharmacists are likely not trained to "evaluate the merits or validity of a police request — or to turn an officer down," as Harwell put it. Shachar said, “These need to go to someone who understands privacy law for review. probably feels very nerve-racking to get a subpoena and tell the person who gave it to you, ‘Oh, you’ll have to wait.’”

Harwell writes, "The pharmacy data could be especially concerning for the nearly one in three women ages 15 to 44 who a Post analysis found live in states where abortion is fully or mostly banned," including Kentucky. "In Texas, Attorney General Ken Paxton has warned pharmacies they could face criminal charges for providing women with 'abortion-inducing drugs'," which are used for most abortions in the U.S.

Bardstown woman who needs a kidney transplant testifies in Congress to change transplant policy; bill passes

LaQuayia Goldring of Bardstown prepared to testify before a U.S. Senate committee about the organ transplant process as she continues her nine year wait for a kidney. (WDRB photo)

A Bardstown woman waiting on a kidney transplant shared her story with Congress and asked them to support legislation that would allow more than one organization to manage the country's organ donations and transplants, Monica Harkins reports for WDRB. 

"I'm just asking that you all stand behind this legislation as we move forth and that all of Congress stands together to pass this legislation so more lives can be saved and less can be put in coffins," LaQuayia Goldring told senators in July.

The legislation passed, and at the end of September, President Biden signed it into law. 

Goldring told Harkins that she was three years old when she was diagnosed with a rare kidney cancer. Harkins writes that Goldring "beat the cancer" in about a year, but more than a decade later she was told there were signs of kidney failure. 

A week after her 17th birthday, Goldring said she learned she needed a kidney transplant and that it only took 10 days to get a match and get the procedure.

"It was able to last from the age of 17 to 25," she told Harkins.  "I'm now 34. I've been waiting nine years for a kidney transplant. And our system is broken." For nine years she's been required to do dialysis treatments five days a week to stay alive.

Harkins writes that part of the waiting process is getting your name registered with the United Network for Organ Sharing,  the sole organization that managed the country's organ donation policies for the past 40 years.

Just a few months ago, Harkins reports that "Goldring found out her name had been removed from the list due to a clerical error. A mistake that fueled part of her testimony in front of U.S. Senators in July." 

Goldring told the senators of her struggles with UNOS and asked them to break up the UNOS monopoly and allow more contracts to be considered for handling organ transplants. 

When Biden signed the legislation to do just that, Goldring told Harkins she was "overjoyed, with, with just joy and tears of relief." 

"It's one thing to hear leaders, like our President, talk about organ donation and how their administration is going to do something to change it, but to actually have a law after 40 years signed doesn't get any better than that," she said.

Goldring is still waiting and praying for a life-saving donation. 

"I'm just staying hopeful that that one match will come and, you know, this will be a thing of the past," she told Harkins. 

According to Donate Life, more than 105,000 Americans are waiting for life-saving organ transplants, 1,000 of them Kentuckians. Goldring has a social media campaign for people who would like to see if they are eligible to donate and to follow her journey. 

5 things to know about new Medicare negotiations on drug prices

By Arthur Allen, Rachana Pradhan and David Hilzenrath

KFF Health News

The Biden administration has picked the first 10 high-priced prescription drugs subject to federal price negotiations, taking a swipe at the powerful pharmaceutical industry. It marks a major turning point in a long-fought battle to control ever-rising drug prices for seniors and, eventually, other Americans.

Under the 2022 Inflation Reduction Act, Congress gave the federal government the power to negotiate prices for certain high-cost drugs under Medicare. The list of drugs selected by the Centers for Medicare and Medicaid Services will grow over time.

The first eligible drugs treat diabetes, blood clots, blood cancers, arthritis, and heart disease — and accounted for about $50 billion in spending from June 2022 to May 2023.

The United States is clearly an outlier on drug costs, with drugmakers charging Americans many times more than residents of other countries “simply because they could,” Biden said Aug. 29. “I think it’s outrageous. That’s why these negotiations matter.”

Democratic lawmakers cheered the announcement, and the pharmaceutical industry, which has filed a raft of lawsuits against the law, condemned it.

The companies have until Oct. 2 to present data about their drugs to CMS, which will make initial price offers in February, starting negotiations set to end next August. The prices would take effect in January 2026.

Here are five things to know about the impact:

1. How important is this step? Medicare has long been in control of the prices for its services, setting physician payments and hospital payments for about 65 million Medicare beneficiaries. But it was previously prohibited from involvement in pricing prescription drugs, which it started covering in 2006.

Until now the drug industry has successfully fought off price negotiations with Washington, although in most of the rest of the world governments set prices for medicines. While the first 10 drugs selected for negotiations are used by a minority of patients — 9 million — CMS plans by 2029 to have negotiated prices for 50 drugs on the market.

“There’s a symbolic impact, but also Medicare spent $50 billion on these 10 drugs in a 12-month period. That’s a lot of money,” said Juliette Cubanski, deputy director of the Kaiser Family Foundation’s analysis of Medicare policy.

The long-term consequences of the new policy are unknown, said Alice Chen, vice dean for research at University of Southern California’s Sol Price School of Public Policy. The drug industry says the negotiations are essentially price controls that will stifle drug development, but the Congressional Budget Office estimated only a few drugs would not be developed each year as a result of the policy.

Biden administration officials say reining in drug prices is key to slowing the skyrocketing costs of U.S. health care.

2. How will the negotiations affect Medicare patients? In some cases, patients may save a lot of money, but the main thrust of Medicare price negotiation policy is to provide savings to the Medicare program — and taxpayers — by lowering its overall costs.

The drugs selected by CMS range from specialized, hyper-expensive drugs like the cancer pill Imbruvica (used by about 26,000 patients in 2021 at an annual price of $121,000 per patient) to extremely common medications such as Eliquis (a blood thinner for which Medicare paid about $4,000 each for 3.1 million patients).

While the negotiations could help patients whose Medicare drug plans require them to make large copayments for drugs, the relief for patients will come from another segment of the Inflation Reduction Act that caps drug spending by Medicare recipients at $2,000 per year starting in 2025.

3. What do the Medicare price negotiations mean for those not on Medicare? One theory is that reducing the prices drug companies can charge in Medicare will lead them to increase prices for the privately insured.

But that would be true only if companies aren’t already pricing their drugs as high as the private market will bear, said Tricia Neuman, executive director of KFF’s program on Medicare policy.

Another theory is that Medicare price negotiations will equip private health plans to drive a harder bargain. David Mitchell, president of the advocacy group Patients for Affordable Drugs, predicted that disclosure of negotiated Medicare prices “will embolden and arm private sector negotiators to seek that lower price for those they cover.”

Stacie B. Dusetzina, a professor of health policy at Vanderbilt University, said the effect on pricing outside Medicare isn’t clear: “I’d hedge my bet that it doesn’t change.”

Dusetzina described one way it could: Because the government will be selecting drugs for Medicare negotiations based partly on the listed gross prices for the drugs — distinct from the net cost after rebates are taken into account — the process could give drug companies an incentive to lower the list prices and narrow the gap between gross and net. That could benefit people outside Medicare whose out-of-pocket payments are pegged to the list prices, she said.

4. What are drug companies doing to stop this? Even though negotiated prices won’t take effect until 2026, drug companies haven’t wasted time turning to the courts to try to stop the new program in its tracks.

At least six drug companies have filed lawsuits to halt the Medicare drug negotiation program, as have the U.S. Chamber of Commerce and the Pharmaceutical Research and Manufacturers of America, known as PhRMA.

The lawsuits include a variety of legal arguments. Merck & Co., Johnson & Johnson and Bristol Myers Squibb are among the companies arguing their First Amendment rights are being violated because the program would force them to make statements on negotiated prices they believe are untrue. Lawsuits also say the program unconstitutionally coerces drugmakers into selling their products at inadequate prices.

“It is akin to the government taking your car on terms that you would never voluntarily accept and threatening to also take your house if you do not ‘agree’ that the taking was ‘fair’,” Janssen, part of Johnson & Johnson, wrote in its lawsuit.

Nicholas Bagley, a law professor at the University of Michigan, predicted the lawsuits would fail because Medicare is a voluntary program for drug companies, and those wishing to participate must abide by its rules.

5. What if a drug suddenly gets cheaper by 2026? In theory, it could happen. Under guidelines CMS issued this year, the agency will cancel or adjourn negotiations on any drug on its list if a cheaper copycat version enters the market and finds substantial buyers.

According to company statements this year, two biosimilar versions of Stelara, a Johnson & Johnson drug on the list, are prepared to launch in early 2025. If they succeed, it would presumably scotch CMS’ plan to demand a lower price for Stelara.

Other drugs on the list have managed to maintain exclusive rights for decades. For example, Enbrel, which the FDA first approved in 1998 and cost Medicare $1.5 billion in 2021, will not face competition until 2029 at the earliest.

U.S. Senate panel OKs bill to rein in pharmacy benefit managers; Kentucky pharmacist applauds similar efforts by House members

By Melissa Patrick

Kentucky Health News

At least one Kentucky pharmacist is applauding the latest efforts to rein in pharmacy benefit managers.

PBMs are middlemen that negotiate drug prices with drug manufacturers and pharmacies. They also design prescription-drug benefits for health plans.  

Taylor Williams

"Fortunately, lawmakers are hearing our concerns loud and clear," Taylor Williams, a second-generation pharmacist from Hazard and an executive fellow with the Kentucky Pharmacists Association, wrote in an op-ed submitted to  Kentucky Health News and other publications.

"Congressman Brett Guthrie, chair of the Health Subcommittee on House Energy and Commerce, and Congressman James Comer, chair of the house Oversight Committee, are working hard to rein in PBMs’ profit-driven role in our healthcare system and ensure that patients can afford the prescriptions they rely on," she wrote.

Williams submitted the op-ed on the same day the Senate Finance Committee advanced a bipartisan bill to change how PBMs interact with federal prescription-drug programs as a way to help lower costs.  It is called the Modernizing and Ensuring PBM Accountability Act. 

The Hill reports, "While other committees have also passed PBM reform bills, the Finance Committee has jurisdiction over Medicare and Medicaid, which make up a large portion of U.S. health spending. Still, all the separate bills in the House and Senate will need to be combined into one floor-friendly package." 

Among other things, the Senate bill includes provisions that would delink PBMs' compensation from drug prices, which would remove an incentive for PBMs to favor higher-priced drugs. It would also add new transparency and reporting requirements and ban spread pricing, in which a PBM keeps the difference between what it bills Medicaid for medications and what it pays the pharmacy to dispense the drug. Click here for a summary of the Act. 

Kentucky lawmakers have been working on PBM issues for years, most recently passing 2020 Senate Bill 50 that among other things, prohibits spread pricing. A 2019 state analysis found PBMs made $123 million through spread pricing in Kentucky.

SB 50 also required the state to hire a single PBM to manage Kentucky Medicaid's prescription-drug business of more than $1 billion a year. Kentucky has saved at least $38 million from this move. 

This year, companion PBM bills were introduced in the state House and Senate, but neither got a hearing.

PBMs argue that they lower costs for consumers because they negotiate for lower drug costs and pass the savings onto to the insurance plans. 

Williams said she recently met with Kentucky's congressional delegation in Washington to share her concerns about PBMs and their impact on Kentucky's independent pharmacies and the patients they serve. 

"Our profession is facing serious challenges because of largely unknown middlemen in the drug pricing system called pharmacy benefit managers," she wrote. "If we don’t do something about them soon, the local community pharmacies that people trust may become a thing of the past. . . . Without much needed reform, PBMs will continue to find new ways to increase their profit margins at the expense of patients, providers and taxpayers. Even worse, it could leave Kentuckians without a local, trusted health-care advisor as many community pharmacies will be forced to close their doors." 

DEA administrator says Congress needs to pass laws to keep social media from serving as platforms to promote, sell fentanyl

Centers for Disease Control and Prevention graph shows huge increase in fentanyl deaths.

The U.S. needs laws to force social-media companies to keep their platforms from being used to promote and sell fentanyl, DEA Administrator Anne Milgram said on NBC's “Meet The Press” Sunday, in a program that was devoted entirely to the drug and the problems it is causing. Just over half of teh 2,135 drug overdoses in Kentucky last year involved fentanyl, a very powerful opioid.

“The border’s an important part of this conversation because most of the fentanyl that we see coming into the United States is coming in through the southwest border,” Milgram said, but “Social media is also a vital part of the conversation. It is what I call the last mile. Because what the cartels need – they’re selling the deadliest poison we’ve ever seen – they need that to … be able to expand and sell more, they need to be able to reach people at massive rates. And that’s what social media’s doing,” The Daily Wire reports.

Host Chuck Todd asked Milgram asked if social-media companies were cooperating with federal law enforcement in trying to fix the problem. She said, “We have not, until recently, gotten nearly as much cooperation as we need. . . . The deputy attorney general convened all of us in April of this year and made it very clear, number one, that the companies have to comply with their own terms of service, which say, ‘This is illegal. You cannot be selling fake pills. You cannot be selling drugs on social media websites’.”

Milgam also said law enforcement needs to be able to get information from social-media companies. Asked if there was something the DEA does not have that Congress could give them that would help them address the issue, she said, “So we talk a lot with Congress about social media. We talk a lot about the need for these platforms – essentially, one of the main ways we see Americans dying right now is through social media, the purchase of pills, fake pills on social media. So, again, if we’re after, how do we stop 110,000 Americans from dying?” She said Congress was “a place to start.”

Guthrie agrees to work on nursing shortage with Democrat on his subcommittee, saying it may be the biggest issue in health care

Rep. Brett Guthrie

U.S. Rep. Brett Guthrie, R-Bowling Green, in his role as chair of the major health subcommittee in the House, pledged last week to work with a rising Delaware Democrat to address the nation's nursing shortage.

At the Wednesday, May 17, meeting of the health subcommittee of the House Energy and Commerce Committee, Rep. Lisa Blunt Rochester of Delaware withdrew her legislation that would set up a national nursing-workforce center and state-based nursing workforce centers.

Rep. Lisa Blunt Rochester

Blunt Rochester's legislation "had been on the agenda for the subcommittee’s April legislative hearing, as was much of the legislation passed by the subcommittee on Wednesday, but it was not included in the markup. Blunt Rochester ultimately pulled her amendment to include it in the wide-ranging bill the subcommittee passed but urged Guthrie to include it in the next markup," reports Michelle Stein of Inside Health Policy. "Guthrie said the nursing workforce shortage is one of the most pressing issues in health care and agreed to work with Blunt Rochester on legislation."

Guthrie said, “One of the biggest issues we have, the biggest maybe in health care, is the nursing shortage. And we definitely need to work together to move forward on that and try to figure out how we can get through this. And so we're certainly willing to work with you.”

Earlier, Blunt Rochester said, “I believe we need a strategy to not only centralize the study and the development of nursing workforce practice and policy, but we also need to better support local entities in addressing state-specific nursing workforce challenges.”

The American Association of Colleges for Nursing has "said nursing school enrollment is not growing fast enough to meet the projected demand for RNs and APRNs," Stein notes. "Nursing homes have warned the administration must take into account nursing shortages when putting together its expected nursing home minimum staffing ratios."

Blunt Rochester is expected to run for the Senate next year, following Monday's announcement by Sen. Tom Carper, D-Del., that he will retire.

Drinking while pregnant can have long-lasting effects on children, but almost 1/2 of pregnant Kentuckians report consuming alcohol

Centers for Disease Control and Prevention illustration

Did you know that children of mothers who drink alcohol during pregnancy can undergo changes to their facial features, accompanied by a variety of lifelong mental and physical challenges? And some other changes may not be visible. Exposure to alcohol before birth can also affect systems throughout the body and have lasting impact, Emma Yasinski reports for National Geographic.

"Studies have estimated that fetal alcohol spectrum disorders, or FASD, affect between 1 and 5 percent of the population, though experts suspect the prevalence is even higher," Yasinski reports. 

The FASD United Policy and Training Center website says FASD is the "most commonly known cause of developmental disabilities in the United States," and recent research shows up to one in 20 first graders have a disability from it.

Almost half of Kentucky women with a recent live birth consumed alcohol during the three months before pregnancy. The figure was 48.7% in 2019, according to the America's Health Rankings report from the United Health Foundation. The national rate was even worse, 56.7%.  

FASD-related problems

It wasn't until the early 1970s that researchers found a pattern among babies born to mothers with severe alcohol-use disorders, including hallmark facial features such as a smooth upper lip, a small head, and a flat nasal bridge. These features were generally accompanied by a variety of lifelong mental and physical challenges such as learning disabilities, difficulty reasoning, growth deficiencies, and heart and kidney problems," Yasinski reports.

Since then, researchers have found that prenatal alcohol exposure can disrupt development of the brain and body even without affecting the face, and include a broad range of conditions that are often inconsistent from one patient to another. Yasinski also delves into the details of how FASD changes the brain. 

The FASD center says people with the disorder often have difficulty learning and remembering, understanding and following directions, shifting attention, controlling emotions and impulsivity, communicating and socializing, and performing daily life skills. It says FASD cases are seriously under-diagnosed and often hard to distinguish from other developmental disorders. 

Further, Yasinski reports that diagnosis requires complex tests and treatments that, due to limited resources and awareness, many patients never get.

“Alcohol affects the brain in different ways, depending on when the brain is exposed in pregnancy and how much it's exposed, and what else is going on, like nutritional factors, genetic factors, other things about the mom and the fetus,” Jeffrey Wozniak, a neurobehavioral development researcher at the University of Minnesota, told Yasinski. “So there's a lot of variety in terms of the brain effects.”

How prevalent is drinking during pregnancy? 

According to Kentucky's 2020 births report from the Public Health Neonatal Abstinence Syndrome Reporting Registry, "Alcohol use was reported by mothers of 4.8% of infants with NAS in Kentucky, which may be lower than the actual rate of use."

Centers for Disease Control and Prevention data show that in 2018-20, 13.5% of pregnant U.S. adults reported that they were currently drinking and 5.2% reported they had engaged in binge drinking.

Many women drink without knowing they are pregnant, and that harm a fetus. About half of all U.S. pregnancies are unintended, and most women don't know they are pregnant until four to six weeks into the pregnancy.

While binge drinking and regular heavy drinking put a fetus at the greatest risk for sever problems, even lesser amounts can also cause damage, says the National Institute on Alcohol Abuse and Alcoholism. 

"In fact, there is no known safe level of alcohol consumption during pregnancy" says the institute. 

Looking forward

The good news is that in the early 2000s, "Studies started to show that targeted therapies could help people who were prenatally exposed to alcohol," Yasinski reports.  

For example, Julie Kable, a neurodevelopmental exposure researcher at Emory University in Atlanta, told Yasinski that she and her team found with the CDC that offering adaptive support helped people with FASD better learn and understand math. Yasinski says researchers have also found ways to help people with FASD with executive function and decision making. 

Kanle told Yasinski, “No longer could we allow pediatricians to say, Well, why should I diagnose it when there's nothing we can do about it?”

But Yasinski reports that the U.S. has too few places that can diagnoise FASD, "and some states don’t even have a single FASD diagnostic center. Since diagnosis requires comprehensive evaluations, the centers that do exist have limited capacity to complete them. Many will only see patients who they know were very likely to have been exposed to alcohol in utero, which accounts for a fraction of those believed to be affected."

She adds,, "While most experts agree on the basic characteristics of FASD, there are also minor differences in diagnostic criteria between states, countries, and clinics, with slightly different cutoffs."  And this, she reports "can create challenges for researchers working to build large data sets, but it also has more immediate impact." For example, one FASD specialist told her that individuals with FASD in some states don't qualify for disability services because " the CDC only has consistent diagnostic criteria for fetal alcohol syndrome, not the whole spectrum of disorders." 

Some in Congress are working to provide resources for screening, research and other supportive services for people with FASD, in a bill called the FASD Respect Act. The FASD United Policy and Training Center says a new version of this bill is to be introduced.

Susan Shepard Carlson, who was a district court judge and first lady of Minnesota, told Yasinski that she is advocating for this bill largely because she realized in 1997 that a many children coming through the courts "had the same kind of profile [as] someone with FASD . . . but we weren't really looking at the underlying cause." 

Because of this, Carlson convened a task force that led to the state funding FASD research and treatment. "The court was able to screen children suspected of having an undiagnosed FASD, and she says about 25 percent of the kids they chose to screen did have an undiagnosed disorder," writes Yasinski.

Kable told Yasinski, “It’s really important to know that we can still have dramatic differences in the developmental outcome of these children, if we get them recognized, and get them services as early as possible.” 

Information for this story was also gathered by Melissa Patrick of Kentucky Health News.