Nearly two years after Texas’ six-week abortion ban, more infants are dying | CNN



CNN
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Texas’ abortion restrictions – some of the strictest in the country – may be fueling a sudden spike in infant mortality as women are forced to carry nonviable pregnancies to term.

Some 2,200 infants died in Texas in 2022 – an increase of 227 deaths, or 11.5%, over the previous year, according to preliminary infant mortality data CNN obtained through a public records request. Infant deaths caused by severe genetic and birth defects rose by 21.6%. That spike reversed a nearly decade-long decline. Between 2014 and 2021, infant deaths had fallen by nearly 15%.

In 2021, Texas banned abortions beyond six weeks of pregnancy. When the Supreme Court overturned federal abortion rights the following summer, a trigger law in the state banned all abortions other than those intended to protect the life of the mother.

The increase in deaths could partly be explained by the fact that more babies are being born in Texas. One recent report found that in the final nine months of 2022, the state saw nearly 10,000 more births than expected prior to its abortion ban – an estimated 3% increase.

But multiple obstetrician-gynecologists who focus on high-risk pregnancies told CNN that Texas’ strict abortion laws likely contributed to the uptick in infant deaths.

“We all knew the infant mortality rate would go up, because many of these terminations were for pregnancies that don’t turn into healthy normal kids,” said Dr. Erika Werner, the chair of obstetrics and gynecology at Tufts Medical Center. “It’s exactly what we all were concerned about.”

The issue of forcing women to carry out terminal and often high-risk pregnancies is at the core of a lawsuit filed by the Center for Reproductive Rights, with several women – who suffered difficult pregnancies or infant deaths shortly after giving birth – testifying in Travis County court this week.

Prior to the recent abortion restrictions, Texas banned the procedure after 20 weeks. This law gave parents more time to learn crucial information about a fetus’s brain formation and organ development, which doctors begin to test for at around 15 weeks.

Samantha Casiano, a plaintiff in the suit filed against Texas, wished she’d had more time to make the decision.

“If I was able to get the abortion with that time, I think it would have meant a lot to me because my daughter wouldn’t have suffered,” Casiano said.

When Casiano was 20 weeks pregnant, a routine scan came back with devastating news: Her baby would be stillborn or die shortly after birth.

The fetus had anencephaly, a rare birth defect that keeps the brain and skull from developing during pregnancy. Babies with this condition are often stillborn, though they sometimes live a few hours or days. Many women around the country who face the prospect choose abortion, two obstetrician-gynecologists told CNN.

But Casiano lived in Texas, where state legislators had recently banned most abortions after six weeks of pregnancy. She couldn’t afford to travel out of the state for the procedure.

“You have no options. You will have to go through with your pregnancy,” Casiano’s doctor told her, she claimed in the lawsuit.

In March, Casiano gave birth to her daughter Halo. After gasping for air for four hours, the baby died, Casiano said during her testimony on Wednesday.

“All she could do was fight to try to get air. I had to watch my daughter go from being pink to red to purple. From being warm to cold,” said Casiano. “I just kept telling myself and my baby that I’m so sorry that this had to happen to you.”

Casiano and 14 others – including two doctors – are plaintiffs in the lawsuit. They allege the abortion ban has denied them or their patients access to necessary obstetrical care. The plaintiffs are asking the courts to clarify when doctors can make medical exceptions to the state’s ban.

Casiano and two other plaintiffs testified Wednesday about hoping to deliver healthy babies but instead learning their lives or pregnancies were in danger.

 Plaintiffs Anna Zargarian, Lauren Miller, Lauren Hall, and Amanda Zurawski at the Texas State Capitol after filing a lawsuit on behalf of Texans harmed by the state's abortion ban on March 7 in Austin, Texas.

“This was just supposed to be a scan day,” Casiano told the court. “It escalated to me finding out my daughter was going to die.”

Lawyers representing the state argued Wednesday that the plaintiffs’ doctors were to blame, saying they misinterpreted the law and failed to provide adequate care for such high-risk pregnancies.

“Plaintiffs will not and cannot provide any evidence of any medical provider in the state of Texas being prosecuted or otherwise penalized for performance of an abortion using the emergency medical exemption,” a lawyer said during the state’s opening statement.

Kylie Beaton, another plaintiff, also had to watch her baby die. Beaton, who didn’t testify this week, learned during a 20-week scan that something was wrong with her baby’s brain, according to the suit.

The doctor diagnosed the fetus with alobar holoprosencephaly, a condition where the two hemispheres of the brain don’t properly divide. Babies with this condition are often stillborn or die soon after birth.

Beaton’s doctor told her he couldn’t provide an abortion unless she was severely ill, or the fetus’s heart stopped. Beaton and her husband sought to obtain an abortion out of state. However, the fetus’s head was enlarged due to its condition, and the only clinic that would perform an abortion charged up to $15,000. Beaton and her husband couldn’t afford it.

Instead, Beaton gave birth to a son she named Grant. The baby cried constantly, wouldn’t eat, and couldn’t be held upright for fear it would put too much pressure on his head, according to the suit. Four days later, Grant died.

Amanda Zurawski of Austin, Texas, center, is the lead plaintiff in the lawsuit.

Experts say that abortion bans in states like Texas lead to increased risk for both babies and mothers.

Maternal mortality has long been a top concern for doctors and health-rights activists. Even before the Supreme Court decision, the United States had the highest maternal mortality rate among wealthy nations, one study found.

Amanda Zurawski, the lawsuit’s lead plaintiff, testified Wednesday that her water broke 18 weeks into her pregnancy, putting her at high risk for a life-threatening infection. Zurawski’s baby likely wouldn’t survive.

But the fetus still had a heartbeat, and so doctors said they were unable to terminate the pregnancy. She received an emergency abortion only after her condition worsened and she went into septic shock.

Zurawski described during Wednesday’s hearing how her family visited the hospital, fearing it would be the last time they would see her. Zurawski has argued that had she been able to obtain an abortion, her life wouldn’t have been in jeopardy in the same way.

“I blame the people who support these bans,” Zurawski said.

Zurawski previously said the language in Texas’ abortion laws is “incredibly vague, and it leaves doctors grappling with what they can and cannot do, what health care they can and cannot provide.”

Pregnancy is dangerous, and forcing a woman to carry a non-viable pregnancy to term is unnecessarily risky when it’s clear the baby will not survive, argued Dr. Mae-Lan Winchester, an Ohio maternal-fetal medicine specialist.

“Pregnancy is one of the most dangerous things a person will ever go through,” Winchester said. “Putting yourself through that risk without any benefit of taking a baby home at the end, it’s … risking maternal morbidity and mortality for nothing.”

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Black or ‘Other’? Doctors may be relying on race to make decisions about your health | CNN

Editor’s Note: CNN’s “History Refocused” series features surprising and personal stories from America’s past to bring depth to conflicts still raging today.



CNN
 — 

When she first learned about race correction, Naomi Nkinsi was one of five Black medical students in her class at the University of Washington.

Nkinsi remembers the professor talking about an equation doctors use to measure kidney function. The professor said eGFR equations adjust for several variables, including the patient’s age, sex and race. When it comes to race, doctors have only two options: Black or “Other.”

Nkinsi was dumbfounded.

“It was really shocking to me,” says Nkinsi, now a third-year medical and masters of public health student, “to come into school and see that not only is there interpersonal racism between patients and physicians … there’s actually racism built into the very algorithms that we use.”

At the heart of a controversy brewing in America’s hospitals is a simple belief, medical students say: Math shouldn’t be racist.

The argument over race correction has raised questions about the scientific data doctors rely on to treat people of color. It’s attracted the attention of Congress and led to a big lawsuit against the NFL.

What happens next could affect how millions of Americans are treated.

Carolyn Roberts, a historian of medicine and science at Yale University, says slavery and the American medical system were in a codependent relationship for much of the 19th century and well into the 20th.

“They relied on one another to thrive,” Roberts says.

It was common to test experimental treatments first on Black people so they could be given to White people once proven safe. But when the goal was justifying slavery, doctors published articles alleging substantive physical differences between White and Black bodies — like Dr. Samuel Cartwright’s claim in 1851 that Black people have weaker lungs, which is why grueling work in the fields was essential (his words) to their progress.

The effects of Cartwright’s falsehood, and others like it, linger today.

In 2016, researchers asked White medical students and residents about 15 alleged differences between Black and White bodies. Forty percent of first-year medical students and 25% of residents said they believed Black people have thicker skin, and 7% of all students and residents surveyed said Black people have less sensitive nerve endings. The doctors-in-training who believed these myths — and they are myths — were less likely to prescribe adequate pain medication to Black patients.

To fight this kind of bias, hospitals urge doctors to rely on objective measures of health. Scientific equations tell physicians everything from how well your kidneys are working to whether or not you should have a natural birth after a C-section. They predict your risk of dying during heart surgery, evaluate brain damage and measure your lung capacity.

But what if these equations are also racially biased?

Race correction is the use of a patient’s race in a scientific equation that can influence how they are treated. In other words, some diagnostic algorithms and risk predictor tools adjust or “correct” their results based on a person’s race.

The New England Journal of Medicine article “Hidden in Plain Sight” includes a partial list of 13 medical equations that use race correction. Take the Vaginal Birth After Cesarean calculator, for example. Doctors use this calculator to predict the likelihood of a successful vaginal delivery after a prior C-section. If you are Black or Hispanic, your score is adjusted to show a lower chance of success. That means your doctor is more likely to encourage another C-section, which could put you at risk for blood loss, infection and a longer recovery period.

Cartwright, the racist doctor from the 1800s, also developed his own version of a tool called the spirometer to measure lung capacity. Doctors still use spirometers today, and most include a race correction for Black patients to account for their supposedly shallower breaths.

Turns out, second-year medical student Carina Seah wryly told CNN, math is as racist as the people who make it.

The biggest problem with using race in medicine? Race isn’t a biological category. It’s a social one.

“It’s based on this idea that human beings are naturally divided into these big groups called races,” says Dorothy Roberts, a professor of law and sociology at the University of Pennsylvania, who has made challenging race correction in medicine her life’s work. “But that’s not what race is. Race is a completely invented social category. The very idea that human beings are divided into races is a made-up idea.”

Ancestry is biological. Where we come from — or more accurately, who we come from — impacts our DNA. But a patient’s skin color isn’t always an accurate reflection of their ancestry.

Look at Tiger Woods, Roberts says. Woods coined the term “Cablinasian” to describe his mix of Caucasian, Black, American Indian and Asian ancestries. But to many Americans, he’s Black.

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“You can be half Black and half White in this country and you are Black,” says Seah, who is getting her medical degree and a PhD in genetics and genomics at the Icahn School of Medicine at Mount Sinai in New York. “You can be a quarter Black in this country — if you have dark skin, you are Black.”

So it can be misleading, Seah says, even dangerous, for doctors to judge a patient’s ancestry by glancing at their skin. A patient with a White mother and Black father could have a genetic mutation that typically presents in patients of European ancestry, Seah says, but a doctor may not think to test for it if they only see Black skin.

“You have to ask, how Black is Black enough?” Nkinsi asks. And there’s another problem, she says, with using a social construct like race in medicine. “It also puts the blame on the patient, and it puts the blame on the race itself. Like being Black is inherently the cause of these diseases.”

Naomi Nkinsi is a third-year medical and masters of public health student at the University of Washington in Seattle. She has been advocating for the removal of race correction in medicine.

After she learned about the eGFR equation in 2018, Nkinsi began asking questions about race correction. She wasn’t alone — on social media she found other students struggling with the use of race in medicine. In the spring of 2020, following a first-year physiology lecture, Seah joined the conversation. But the medical profession is nothing if not hierarchical; Nkinsi and Seah say students are encouraged to defer to doctors who have been practicing for decades.

Then on May 25, 2020, George Floyd was killed by police in Minneapolis.

His death and the growing momentum around Black Lives Matter helped ignite what Dr. Darshali A. Vyas calls an “overdue reckoning” in the medical community around race and race correction. A few institutions had already taken steps to remove race from the eGFR equation. Students across the country demanded more, and hospitals began to listen.

History Refocused BLM White Coats

Four days after Floyd’s death, the University of Washington announced it was removing race correction from the eGFR equation. In June, the Boston-based hospital system Mass General Brigham where Vyas is a second-year Internal Medicine resident followed suit. Seah and a fellow student at Mount Sinai, Paloma Orozco Scott, started an online petition and collected over 1600 signatures asking their hospital to do the same.

Studies show removing race from the eGFR equation will change how patients at those hospitals are treated. Researchers from Brigham and Women’s Hospital and Penn Medicine estimated up to one in every three Black patients with kidney disease would have been reclassified if the race multiplier wasn’t applied in earlier calculations, with a quarter going from stage 3 to stage 4 CKD (Chronic Kidney Disease).

That reclassification is good and bad, says Dr. Neil Powe, chief of medicine at Zuckerberg San Francisco General Hospital. Black patients newly diagnosed with kidney disease will be able to see specialists who can devise better treatment plans. And more patients will be placed on kidney transplant lists.

On the flip side, Powe says, more African Americans diagnosed with kidney disease means fewer who are eligible to donate kidneys, when there’s already a shortage. And a kidney disease diagnosis can change everything from a patient’s diabetes medication to their life insurance costs.

Dr. Neil Powe says by simply removing race from the eGFR equations,

Powe worries simply eliminating race from these equations is a knee-jerk response — one that may exacerbate health disparities instead of solve them. For too long, Powe says, doctors had to fight for diversity in medical studies.

The most recent eGFR equation, known as the CKD-EPI equation, was developed using data pooled from 26 studies, which included almost 3,000 patients who self-identified as Black. Researchers found the equation they were developing was more accurate for Black patients when it was adjusted by a factor of about 1.2. They didn’t determine exactly what was causing the difference in Black patients, but their conclusion is supported by other research that links Black race and African ancestry with higher levels of creatinine, a waste product filtered by the kidneys.

Put simply: In the eGFR equation, researchers used race as a substitute for an unknown factor because they think that factor is more common in people of African descent.

Last August, Vyas co-authored the “Hidden in Plain Sight” article about race correction. Vyas says most of the equations she wrote about were developed in a similar way to the eGFR formula: Researchers found Black people were more or less likely to have certain outcomes and decided race was worth including in the final equation, often without knowing the real cause of the link.

“When you go back to the original studies that validated (these equations), a lot of them did not provide any sort of rationale for why they include race, which I think is appalling.” That’s what’s most concerning, Vyas says – “how willing we are to believe that race is relevant in these ways.”

Vyas is clear she isn’t calling for race-blind medicine. Physicians cannot ignore structural racism, she says, and the impact it has on patients’ health.

Powe has been studying the racial disparities in kidney disease for more than 30 years. He can spout the statistics easily: Black people are three times more likely to suffer from kidney failure, and make up more than 35% of patients on dialysis in the US. The eGFR equation, he says, did not cause these disparities — they existed long before the formula.

“We want to cure disparities, let’s go after the things that really matter, some of which may be racist,” he says. “But to put all our stock and think that the equation is causing this is just wrong because it didn’t create those.”

In discussions about removing race correction, Powe likes to pose a question: Instead of normalizing to the “Other” group in the eGFR equation, as many of these hospitals are doing, why don’t we give everyone the value assigned to Black people? By ignoring the differences researchers saw, he says, “You’re taking the data on African Americans, and you’re throwing it in the trash.”

Powe is co-chair of a joint task force set up by the National Kidney Foundation and the American Society of Nephrology to look at the use of race in eGFR equations. The leaders of both organizations have publicly stated race should not be included in equations used to estimate kidney function. On April 9, the task force released an interim report that outlined the challenges in identifying and implementing a new equation that’s representative of all groups. The group is expected to issue its final recommendations for hospitals this summer.

Race correction is used to assess the kidneys and the lungs. What about the brain?

In 2013, the NFL settled a class-action lawsuit brought by thousands of former players and their families that accused the league of concealing what it knew about the dangers of concussions. The NFL agreed to pay $765 million, without admitting fault, to fund medical exams and compensate players for concussion-related health issues, among other things. Then in 2020, two retired players sued the NFL for allegedly discriminating against Black players who submitted claims in that settlement.

01 race correction Kevin Henry Najeh Davenport SPLIT

The players, Najeh Davenport and Kevin Henry, said the NFL race-corrected their neurological exams, which prevented them from being compensated.

According to court documents, former NFL players being evaluated for neurocognitive impairment were assumed to have started with worse cognitive function if they were Black. So if a Black player and a White player received the exact same scores on a battery of thinking and memory tests, the Black player would appear to have suffered less impairment. And therefore, the lawsuit stated, would be less likely to qualify for a payout.

Race correction is common in neuropsychology using something called Heaton norms, says Katherine Possin, an associate professor at the University of California San Francisco. Heaton norms are essentially benchmark average scores on cognitive tests.

Here’s how it works: To measure the impact of a concussion (or multiple concussions over time), doctors compare how well the patient’s brain works now to how well it worked before.

“The best way to get that baseline was to test you 10 years ago, but that’s not something we obviously have for many people,” Possin says. So doctors estimate your “before” abilities using an average score from a group of healthy individuals, and adjust that score for demographic factors known to affect brain function, like your age.

Heaton norms adjust for race, Possin says, because race has been linked in studies to lower cognitive scores. To be clear, that’s not because of any biological differences in Black and White brains, she says; it’s because of social factors like education and poverty that can impact cognitive development. And this is where the big problem lies.

In early March, a judge in Pennsylvania dismissed the players’ lawsuit and ordered a mediator to address concerns about how race correction was being used. In a statement to CNN, the NFL said there is no merit to the players’ claim of discrimination, but it is committed to helping find alternative testing techniques that do not employ race-based norms.

The NFL case, Possin wrote in JAMA, has “exposed a major weakness in the field of neuropsychology: the use of race-adjusted norms as a crude proxy for lifelong social experience.”

This happens in nearly every field of medicine. Race is not only used as a poor substitute for genetics and ancestry, it’s used as a substitute for access to health care, or lifestyle factors like diet and exercise, socioeconomic status and education. It’s no secret that racial disparities exist in all of these. But there’s a danger in using race to talk about them, Yale historian Carolyn Roberts says.

We know, for example, that Black Americans have been disproportionally affected by Covid-19. But it’s not because Black bodies respond differently to the virus. It’s because, as Dr. Anthony Fauci has noted, a disproportionate number of Black people have jobs that put them at higher risk and have less access to quality health care. “What are we making scientific and biological when it actually isn’t?” Roberts asks.

Vyas says using race as a proxy for these disparities in clinical algorithms can also create a vicious cycle.

“There’s a risk there, we argue, of simply building these into the system and almost accepting them as fact instead of focusing on really addressing the root causes,” Vyas says. “If we systematize these existing disparities … we risk ensuring that these trends will simply continue.”

Nearly everyone on both sides of the race correction controversy agrees that race isn’t an accurate, biological measure. Yet doctors and researchers continue to use it as a substitute. Math shouldn’t be racist, Nkinsi says, and it shouldn’t be lazy.

“We’re saying that we know that this race-based medicine is wrong, but we’re going to keep doing it because we simply don’t have the will or the imagination or the creativity to think of something better,” Nkinsi says. “That is a slap in the face.”

Shortly after Vyas’ article published in The New England Journal of Medicine, the House Ways and Means Committee sent letters to several professional medical societies requesting information on the misuse of race in clinical algorithms. In response to the lawmakers’ request, the Agency for Healthcare Research and Quality is also gathering information on the use of race-based algorithms in medicine. Recently, a note appeared on the Maternal Fetal Medicine Units Network’s website for the Vaginal Birth After Cesarean equation — a new calculator that doesn’t include race and ethnicity is being developed.

Dorothy Roberts is excited to see change on the horizon. But she’s also a bit frustrated. The harm caused by race correction is something she’s been trying to tell doctors about for years.

“I’ve taught so many audiences about the meaning of race and the history of racism in America and the audiences I get the most resistance from are doctors,” Roberts says. “They’re offended that there would be any suggestion that what they do is racist.”

Nkinsi and Seah both encountered opposition from colleagues in their fight to change the eGFR equation. Several doctors interviewed for this story argued the change in a race-corrected scores is so small, it wouldn’t change clinical decisions.

If that’s the case, Vyas wonders, why include race at all?

“It all comes from the desire for one to dominate another group and justify it,” says Roberts. “In the past, it was slavery, but the same kinds of justifications work today to explain away all the continued racial inequality that we see in America… It is mass incarceration. It’s huge gaps in health. It’s huge differences in income and wealth.”

It’s easier, she says, to believe these are innate biological differences than to address the structural racism that caused them.



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Concern grows around US health-care workforce shortage: ‘We don’t have enough doctors’ | CNN



CNN
 — 

There is mounting concern among some US lawmakers about the nation’s ongoing shortage of health-care workers, and the leaders of historically Black medical schools are calling for more funding to train a more diverse workforce.

As of Monday, in areas where a health workforce shortage has been identified, the United States needs more than 17,000 additional primary care practitioners, 12,000 dental health practitioners and 8,200 mental health practitioners, according to data from the Health Resources & Services Administration. Those numbers are based on data that HRSA receives from state offices and health departments.

“We have nowhere near the kind of workforce, health-care workforce, that we need,” Vermont Sen. Bernie Sanders told CNN on Friday. “We don’t have enough doctors. We don’t have enough nurses. We don’t have enough psychologists or counselors for addiction. We don’t have enough pharmacists.”

The heads of historically Black medical schools met with Sanders in a roundtable at the Morehouse School of Medicine in Atlanta on Friday to discuss the nation’s health-care workforce shortage.

The health-care workforce shortage is “more acute” in Black and brown communities; the Black community constitutes 13% of the US population, but only 5.7% of US physicians are Black, said Sanders, chairman of the Senate Committee on Health, Education, Labor, and Pensions.

“What we’re trying to do in this committee – in our Health, Education, Labor Committee – is grow the health-care workforce and put a special emphasis on the needs to grow more Black doctors, nurses, psychologists, et cetera,” Sanders said.

At Friday’s roundtable, the leaders of the Morehouse School of Medicine, Meharry Medical College, Howard University and Charles R. Drew University called for more resources and opportunities to be allocated to their institutions to help grow the nation’s incoming health-care workforce.

“Allocating resources and opportunities matter for us to increase capacity and scholarships and programming to help support these students as they matriculate through,” Dr. Valerie Montgomery Rice, president of the Morehouse School of Medicine, told CNN.

“But also, the other 150-plus medical schools, beyond our four historically Black medical schools, owe it to the country to increase the diversity of the students that they train,” Rice said, adding that having a health-care workforce that reflects the communities served helps reduce the health inequities seen in the United States.

Historically Black medical schools are “the backbone for training Black doctors in this country,” Dr. Hugh Mighty, senior vice president for health affairs at Howard University, said at Friday’s event. “As the problem of Black physician shortages rise, within the general context of the physician workforce shortage, many communities of need will continue to be underserved.”

A new study commissioned by the National Institute on Minority Health and Health Disparities estimates that the economic burden of health inequities in the United States has cost the nation billions of dollars. Such inequities are illustrated in how Black and brown communities tend to have higher rates of serious health outcomes such as maternal deaths, certain chronic diseases and infectious diseases.

The researchers, from Johns Hopkins University and other institutions, analyzed excess medical care expenditures, death records and other US data from 2016 through 2019. They took a close look at health inequities in the cost of medical care, differences in premature deaths and the amount of labor market productivity that has been lost due to health reasons.

The researchers found that, in 2018, the economic burden of health inequities for racial and ethnic minority communities in the United States was up to $451 billion, and the economic burden of health inequities for adults without a four-year college degree was up to $978 billion.

“These findings provide a clear and important message to health care leaders, public health officials, and state and federal policy makers – the economic magnitude of health inequities in the US is startlingly high,” Drs. Rishi Wadhera and Issa Dahabreh, both of Harvard University, wrote in an editorial that accompanied the new study in the journal JAMA.

The Covid-19 pandemic “pulled the curtain back” on health inequities, such as premature death and others, Rice said, and “we saw a disproportionate burden” on some communities.

“We saw a higher death rate in Black and brown communities because of access and fear and a whole bunch of other factors, including what we recognize as racism and unconscious bias,” Rice said.

“We needed more physicians, more health-care providers. So, we already know when we project out to 2050, we have a significant physician shortage based on the fact that we cannot educate and train enough health care professionals fast enough,” she said. “We can’t just rely on physicians. We have to rely on a team approach.”

She added that the nation’s shortage of health-care workers leaves the country ill-prepared to respond to future pandemics.

The United States is projected to face a shortage of up to 124,000 physicians by 2034 as the demand outpaces supply, according to the Association of American Medical Colleges.

The workforce shortage means “we’re really not prepared” for another pandemic, Sanders said.

“We don’t have the public health infrastructure that we need state by state. We surely don’t have the doctors and the nurses that we need,” Sanders said. “So what we are trying to do now is to bring forth legislation, which will create more doctors and more nurses, more dentists, because dental care is a major crisis in America.”

In March, Bill McBride, executive director of the National Governors Association, wrote a letter to Sanders and Louisiana Sen. Bill Cassidy detailing the “root causes” of the health-care workforce shortage and potential ways some states are hoping to tackle the crisis.

“Governors have taken innovative steps to address the healthcare workforce shortage facing their states and territories by boosting recruitment efforts, loosening licensing requirements, expanding training programs and raising providers’ pay,” McBride wrote.

“Shortages in healthcare workers is not a new challenge but has only worsened in the past three years due to the COVID-19 pandemic. Burnout and stress have only exacerbated this issue,” he wrote. “The retirement and aging of an entire generation is front and center of the healthcare workforce shortage, particularly impacting rural communities.”

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Kids need to gain weight during adolescence. Here’s why | CNN

Editor’s Note: Michelle Icard is the author of several books on raising adolescents, including “Fourteen Talks by Age Fourteen.”



CNN
 — 

I’ve worked with middle schoolers, their parents and their schools for 20 years to help kids navigate the always awkward, often painful, sometimes hilarious in hindsight, years of early adolescence.

Most of the social and development stretch marks we gain during adolescence fade to invisibility over time. We stop holding a grudge against the kid who teased us in class for tripping, or we forgive ourselves our bad haircuts, botched friendships and cringy attempts at popularity.

But one growing pain can be dangerously hard to recover from, and ironically, it’s the one that has most to do with our physical growth.

Children are supposed to keep growing in adolescence, and so a child’s changing body during that time should not be cause for concern. Yet it sends adults into a tailspin of fear around weight, health and self-esteem.

Kids have always worried about their changing bodies. With so many changes in such a short period of early puberty, they constantly evaluate themselves against each other to figure out if their body development is normal. “All these guys grew over the summer, but I’m still shorter than all the girls. Is something wrong with me?” “No one else needs a bra, but I do. Why am I so weird?”

But the worry has gotten worse over the past two decades. I’ve seen parents becoming increasingly worried about how their children’s bodies change during early puberty. When I give talks about parenting, I often hear adults express concern and fear about their children starting to gain “too much” weight during early adolescence.

Parents I work with worry that even kids who are physically active, engaged with others, bright and happy might need to lose weight because they are heavier than most of their peers.

Why are parents so focused on weight? In part, I think it’s because our national conversations about body image and disordered eating have reached a frenzy on the topic. Over the past year, two new angles have further complicated this matter for children.

Remember Jimmy Kimmel’s opening monologue at the Oscars making Ozempic and its weight-loss properties a household name? Whether it’s social media or the mainstream press, small bodies and weight loss are valued. It’s clear to young teens I know that celebrities have embraced a new way to shrink their bodies.

Constant messages about being thin and fit are in danger of overexposing kids to health and wellness ideals that are difficult to extract from actual health and wellness.

Compound this with the American Academy of Pediatrics recently changing its guidelines on treating overweight children, and many parents worry even more that saying or doing nothing about their child’s weight is harmful.

The opposite is true. Parents keep their children healthiest when they say nothing about their changing shape. Here’s why.

Other than the first year of life, we experience the most growth during adolescence. Between the ages of 13 and 18, most adolescents double their weight. Yet weight gain remains a sensitive, sometimes scary subject for parents who fear too much weight gain, too quickly.

It helps to understand what’s normal. On average, boys do most of their growing between 12 and 16. During those four years, they might grow an entire foot and gain as much as 50 to 60 pounds. Girls have their biggest growth spurt between 10 and 14. On average, they can gain 10 inches in height and 40 to 50 pounds during that time, according to growth charts from the US Centers for Disease Control and Prevention.

Boys do most of their growing between ages 12 and 16 on average. They may even grow an entire foot.

“It’s totally normal for kids to gain weight during puberty,” said Dr. Trish Hutchison, a board-certified pediatrician with 30 years of clinical experience and a spokesperson for the American Academy of Pediatrics, via email. “About 25 percent of growth in height occurs during this time so as youth grow taller, they’re also going to gain weight. Since the age of two or three, children grow an average of about two inches and gain about five pounds a year. But when puberty hits, that usually doubles.”

The American Academy of Pediatrics released a revised set of guidelines for pediatricians in January, which included recommendations of medications and surgery for some children who measure in the obese range.

In contrast, its 2016 guidelines talked about eating disorder prevention and “encouraged pediatricians and parents not to focus on dieting, not to focus on weight, but to focus on health-promoting behaviors,” said Elizabeth Davenport, a registered dietitian in Washington, DC.

“The new guidelines are making weight the focus of health,” she said. “And as we know there are many other measures of health.”

Davenport said she worries that kids could misunderstand their pediatricians’ discussions about weight, internalize incorrect information and turn to disordered eating.

“A kid could certainly interpret that message as not needing to eat as much or there’s something wrong with my body and that leads down a very dangerous path,” she said. “What someone could take away is ‘I need to be on a diet’ and what we know is that dieting increases the risk of developing an eating disorder.”

Many tweens have tried dieting, and many parents have put their kids on diets.

“Some current statistics show that 51% of 10-year-old girls have tried a diet and 37% of parents admit to having placed their child on a diet,” Hutchison said in an email, adding that dieting could be a concern with the new American Academy of Pediatrics guidelines.

“There is evidence that having conversations about obesity can facilitate effective treatment, but the family’s wishes should strongly direct when these conversations should occur,” Hutchison said. “The psychological impact may be more damaging than the physical health risks.”

It’s not that weight isn’t important. “For kids and teens, we need to know what their weight is,” Davenport said. “We are not, as dietitians, against kids being weighed because it is a measure to see how they’re growing. If there’s anything outstanding on an adolescent’s growth curve, that means we want to take a look at what’s going on. But we don’t need to discuss weight in front of them.”

In other words, weight is data. It may or may not indicate something needs addressing. The biggest concern, according to Davenport, is when a child isn’t gaining weight. That’s a red flag something unhealthy is going on.

“Obesity is no longer a disease caused by energy in/energy out,” Hutchison said. “It is much more complex and other factors like genetics, physiological, socioeconomic, and environmental contributors play a role.”

It’s important for parents and caregivers to know that “the presence of obesity or overweight is NOT an indication of poor parenting,” she said. “And it’s not the child or adolescent’s fault.”

It’s also key to note, Hutchison said, that the new American Academy of Pediatrics guidelines, which are only recommendations, are not for parents. They are part of a 100-page document that provides information to health care providers with clinical practice guidelines for the evaluation and treatment of children and adolescents who are overweight or obese. Medications and surgery are discussed in only four pages of the document.

Parents need to work on their own weight bias, but they also need to protect their children from providers who don’t know how to communicate with their patients about weight.

“Working in the field of eating disorder treatment for over 20 years, I sadly can’t tell you the number of clients who’ve come in and part of the trigger for their eating disorder was hearing from a medical provider that there was an issue or a concern of some sort with their weight,” Davenport said.

Hutchison said doctors and other health providers need to do better.

“We all have a lot of work to do when it comes to conversations about weight,” Hutchison said. “We need to approach each child with respect and without (judgment) because we don’t want kids to ever think there is something wrong with their body.”

The right approach, according to American Academy of Pediatrics training, is to ask parents questions that don’t use the word “weight.” One example Hutchison offered: “What concerns, if any, do you have about your child’s growth and health?” 

Working sensitively, Hutchison said she feels doctors can have a positive impact on kids who need or want guidance toward health-promoting behaviors.

Kids can misunderstand doctors' discussions about their weight and internalize incorrect information.

Davenport and her business partner in Sunny Side Up Nutrition, with input from the Carolina Resource Center for Eating Disorders, have gotten more specific. They have created a resource called Navigating Pediatric Care to give parents steps they can take to ask health care providers to discuss weight only with them — not with children.

“Pediatricians are supposed to ask permission to be able to discuss weight in front of children,” Davenport said. “It’s a parent’s right to ask this and advocate for their child.”

Davenport advises parents to call ahead and schedule an appointment to discuss weight before bringing in a child for a visit. She also suggests calling or emailing ahead with your wishes, though she admits it may be less effective in a busy setting. She said to print out a small card to hand to the nurse and physician at the appointment. You can also say in front of the child, “We prefer not to discuss weight in front of my child.” 

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US cigarette smoking rate falls to historic low, but e-cigarette use keeps climbing | CNN



CNN
 — 

The percentage of adults who smoked cigarettes in the United States fell to a historic low last year, the US Centers for Disease Control and Prevention found. However, e-cigarettes are becoming even more popular.

About 11% of adults told the CDC last year that they were current cigarette smokers, according to the latest preliminary data from the National Health Interview Survey, a biannual survey that provides general information about health-related topics. The survey includes responses from 27,000 people age 18 and older. In 2020 and 2021, about 12.5% of adults said they smoked cigarettes.

This is a significant drop from when surveys like these started. Surveys of Americans in the 1940s found that about half of all adults said they smoked cigarettes. Rates began to decline in the 1960s, and more recently, in 2016, 15.5% of adults said they smoked cigarettes.

Recent studies have shown some groups are still at higher risk. While the latest CDC survey doesn’t capture this level of detail, cigarette smoking rates among some communities – including Native Americans, Alaska Natives and members of the LGBTQ community remain “alarmingly high” according to the 2023 State of Tobacco Control report from the American Lung Association.

The general drop in cigarette smoking among adults should have a positive impact on public health.

Cigarette smoking is still the leading cause of preventable death and disability in the US. So many people have died from smoking, the CDC finds, that more than 10 times as many US citizens have died prematurely from cigarette smoking than have died in all the wars fought by the US.

Smokers are 90% of the lung cancer cases in the United States, but smoking can also cause someone to have a stroke, coronary heart disease, and COPD, as well as other cancers including bladder, colon, kidney, liver, stomach and other cancers. People who live with smokers also are at a greater risk of death, because of secondhand smoke.

This latest survey does not capture why fewer people smoked cigarettes, but the number has been on the decline since the 1960s, after the US surgeon general released the first report on smoking and health that concluded that smoking causes serious health problems.

Experts credit a variety of efforts for the decline in cigarette smoking – anti-smoking campaigns, programs that educate children about the danger of smoking, laws that severely restrict where people could smoke and where cigarette companies could advertise, as well as better access to smoking cessation programs and higher taxes that make cigarettes expensive.

However, Congress hasn’t raised federal tobacco taxes in 14 years. The federal cigarette tax remains $1.01 per pack, and taxes vary for other tobacco products. No state increased its cigarette taxes in 2022.

The pandemic may also have had an influence. Smokers were much more vulnerable to the severe consequences of Covid-19 and that gave some people the extra motivation they needed to quit – and may have given doctors the extra motivation they needed to help them too, according to Dr. Panagis Galiatsatos, a volunteer medical spokesperson with the American Lung Association. At some level, the pandemic also made the medical establishment easier to access.

“The pandemic, I think, really allowed physicians time they never probably had in the past to conduct these telemedicine visits that were appropriate just for smoking cessation strategies, helping them help patients quit and stay quit,” said Galiatsatos, who is a pulmonary and critical care medicine physician and is director of the Tobacco Treatment Clinic with Johns Hopkins Medicine.

Galiatsatos points to the US Surgeon General report released during the Trump administration, just prior to the start of the pandemic. The report detailed that of the patients they have now that smoke, the few that are left are going to be the most resistant to quitting. Then-Surgeon General Jerome Adams’ report encouraged more doctors to help their patients quit. The report found that 40% of smokers are not routinely told by their doctors to stop.

Still, the culture has changed. Smoking is much less socially acceptable in some cultures in the US.

E-cigarette use, though, seems to be more socially acceptable, especially among younger people studies show, and that may explain why those numbers are up.

The current survey found that e-cigarette use rose to nearly 6% last year, that’s up from about 4.9% the year before.

Some argue that e-cigarettes are a good substitute for regular cigarettes, and in some countries they are even promoted as a smoking cessation devices, but the CDC says that “e-cigarettes are not safe for youth, young adults, and pregnant women, as well as adults who do not currently use tobacco products.”

A BMJ study published in February found that people who used e-cigarettes to quit smoking found them to be less helpful than more traditional smoking cessation aids.

The US Food and Drug Administration says there is not enough evidence to support claims that these products are effective tools to help people quit smoking. None are approved for this purpose. The FDA says there are no safe tobacco products, including e-cigarettes, vapes, and other electronic nicotine delivery systems.

“I always hold no stigma or judgment when anyone wants to smoke a traditional cigarette or use electronic cigarettes, but as a lung doctor, I will always promote only air to come into the lungs,” said Galiatsatos. “From my standpoint, I think we should still have a public health mindset around e-cigarette usage because for some individuals, they’re going to have health consequences from this product.”

He said people may choose to vape instead of smoke cigarettes, but clinicians should be prepared to help this population if they do want to quit.

E-cigarettes can, though, produce a number of chemicals that are not good for human health, including acrolein, acetaldehyde, and formaldehyde. Studies show these chemicals are known as aldehydes and can cause lung and heart disease, according to the American Lung Association.

Among teens, nicotine exposure can harm the developing brain, according to the US surgeon general.

E-cigarettes are much more popular than cigarettes among teens, so the adult e-cigarette user numbers will likely continue to grow.

About 14% of high school students said they used e-cigarettes, and 2% of high school students smoked cigarettes last year, according to separate CDC data.

The rate of kids that use e-cigarettesis high, the American Academy of Pediatrics says.

Specifically, in 2022, nearly 5% of middle school and about 17% of high school students reported some form of current tobacco use, according to CDC data from an earlier survey. In 2021, about 11% of middle schoolers and 34% of high schoolers said they had ever tried tobacco.

These “try rates” are important because most adult smokers started at young ages, according to the CDC.

The AAP continues to encourage pediatricians to screen for tobacco use as part of a child’s regular checkup. A talk about tobacco should start no later than age 11 or 12, the report says.

For adult smokers, the CDC encourages encourages people to call 1-800-QUIT-NOW where people can get free confidential coaching. The government also offers free online resources and even text programs that can help people quit.

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Amid contradictory laws, hospitals in one state were unable to explain policies on emergency abortion care, study finds | CNN



CNN
 — 

Oklahoma’s laws restricting abortions have created a confusing, contradictory environment that may have a chilling effect on health care, new research says.

After the US Supreme Court overturned the right to an abortion last year with the Dobbs v. Jackson Women’s Health Organization decision, several states quickly passed laws that restricted such procedures. A report released Tuesday and described in the medical journal the Lancet finds that the laws in at least one state left workers at many hospitals confused about how to proceed.

When the court made its decision, the Oklahoma law that criminalized abortion in 1910 went back into effect, according to the state’s attorney general. Lawmakers then created multiple overlapping laws that further criminalized abortion and increased penalties for those who performed or assisted in an abortion procedure, according to the new report from Physicians for Human Rights, Oklahoma Call for Reproductive Justice and the Center for Reproductive Rights.

The Oklahoma laws allow abortion in the case of a medical emergency, but one doesn’t define a medical emergency. Another says it allows for the “preservation of life in a medical emergency,” defined as causing “substantial and irreversible body of bodily impairment” – which is not a medical term, experts say.

To understand exactly how well Oklahoma hospitals understood the laws, the researchers used a “secret shopper method,” study co-author Dr. Michele Heisler said.

Researchers posed as prospective patients and called 34 hospitals to ask about the emergency pregnancy care they offered.

Heisler said that when the researchers designed the study, she expected the hospitals to tell the patients that they could get help in an emergency but that a second provider might have to sign off on an abortion or that a doctor would have to get the decision past an “onerous” hospital oversight committee.

“What we weren’t expecting is that there would be so much confusion and contradictory information and really not clear information,” said Heisler, who is medical director at Physicians for Human Rights and a professor of internal medicine and public health at the University of Michigan.

The researchers said that none of the hospitals they contacted in Oklahoma was totally able to articulate clear, consistent policies for emergency obstetric care to potential patients.

Specifically, 65% – 22 of the 34 hospitals – were unable to provide information about policies, procedures or the support provided to doctors when it is clinically necessary to terminate a pregnancy to save the life of a pregnant patient.

In 14 of the 22 cases, hospital representatives provided unclear and/or incomplete answers about whether doctors require approval to perform a medically necessary abortion.

Three of the hospitals said they do not provide abortions at all, even though it remains legal in the case of a medical emergency or to “preserve the life” of the pregnant person. Four others provided information that was factually wrong, the report says.

Four hospitals said they had formal approval processes that clinicians must go through if they have a situation in which it is medically necessary to terminate a pregnancy; they cannot make that decision on their own.

Three hospitals indicated that they have policies for these situations but refused to share any information about them.

“Unfortunately, it is being just left up to individual health systems and clinicians to try to make sense of these laws and provide guidance and support,” Heisler said.

The Oklahoma Hospital Association said it has been in conversations with Oklahoma’s medical licensure boards to seek clarity about the state’s conflicting abortion laws.

The association sent guidance to its members in September to explain what it interpreted as “saving the life of a pregnant woman” and what the laws would mean for a person made pregnant through rape or incest, among other issues. The guidance explains that the state’s criminal laws do not make an exception for these circumstances unless it is to save the life of someone who is pregnant in a medical emergency.

The guidance also warns that a person convicted of “administering, prescribing, advising, or procuring a woman to take any medicine drug or substance, or a person convicted of using or employing any instruction or ‘other means whatever,’ with the intent to procure an abortion, shall be guilty of a felony punishable by two (2) to (5) years imprisonment. From August 27, 2022, forward, a person convicted of performing or attempting to perform an abortion shall be guilty of a felony punishable by a fine not to exceed One Hundred Thousand ($100,000.00) and/or imprisonment not to exceed ten (10) years.”

The guidance says the “persons potentially liable” are the provider, not the pregnant person.

Study co-author Rabia Muqaddam, a senior staff attorney at the Center for Reproductive Rights who is working on multiple cases challenging the abortion bans in Oklahoma, called the overlapping laws a “bizarre” situation.

“Aside from the fact that there are so many of them is that they all conflict,” she said. “All of the laws have inconsistent definitions, which is where a lot of the confusion comes from for health care providers. What’s most dangerous for patients is the fact that the definitions of medical emergency and life-preserving abortions is unclear and inconsistent.”

“If I was the hospital general counsel and I was looking at these laws, I have absolutely no idea what my physician could or could not do in any particular circumstance,” she said.

When there is a lack of clarity and when penalties are involved, “what you get is massive chill.”

“Physicians are terrified. They’re terrified that if they make the wrong decision, they’re going to go to jail. They’re going to lose their license. And at the other end of that is that patients are being seriously harmed,” Muqaddam said.

Sonia M. Suter, a professor of law at George Washington University who was not involved in the new research, said recent abortion laws have created “such a mess.”

“You are telling physicians that they have two conflicting obligations,” said Suter, whose scholarship focuses on issues at the intersection of law, medicine and bioethics, with a particular focus on reproductive rights.

There is an obligation to stabilize patients in emergencies that may not always qualify as “life-threatening,” but doctors and hospitals could also risk being sued because the doctors are not following the standard of care, “which you can’t do with how some of these exceptions are worded.”

She said hospitals also don’t know how the laws will be applied. Lawyers typically will instruct institutions to interpret the law as conservatively as possible, and physicians may be equally conservative because they don’t want to risk their licenses or face stiff penalties.

“It’s just devastating for everybody,” Suter said. “It’s just cruel.”

Molly Meegan, general counsel for the American College of Obstetricians and Gynecologists, said state laws to restrict abortion with emergency exceptions are not comprehensive.

“They can’t be applied in a medical situation. They just aren’t practical,” she said. “They have an ethical and personal duty to their patients to do what is best for their patients. It can at times be in direct conflict with whatever the laws are, especially if they’re vague, and most of the ob/gyns throughout the country, including in Oklahoma, are in an impossible situation.”

Meegan and Suter both believe the confusion will lead to the deaths of more women. Those who survive may be left with dire health problems, including losing the ability to have children in the future.

“They already have horrific maternal mortality and infant mortality rates,” Suter said. “It feels like the end of evidence-based medicine.”

According to the US Centers for Disease Control and Prevention, Oklahoma persistently ranks among the states with the worst rates of maternal deaths, even before the new abortion laws went into effect. The state had a maternal mortality rate of 25.2 deaths per 100,000 live births for 2018-20, well above the national average.

For communities of color, the rate is significantly worse, according to the Oklahoma Health Department.

White women had 23.2 maternal deaths per 100,000 live births for 2018-20, the lowest rate overall in Oklahoma. The rates for Black women and Native American women were about twice as high: 49.4 and 44.4, respectively.

Oklahoma is not alone. The 13 states where most abortions are banned generally have some of the highest infant and maternal mortality rates in the country, Heisler said. Even more states could be restricting abortion access soon, the experts believe, with potentially more problems to come.

“The hostile climate many states are creating for the health care field by enacting criminal and other penalties for abortion care is an outcome whose reverberations we are only just beginning to see,” said Kelly Baden, vice president for public policy at the reproductive health nonprofit Guttmacher Institute.

Heisler noted that the researchers don’t blame the hospitals or the doctors for this confusion. Overall, she said, the staffers who talked to the researchers “were wonderful,” despite the circumstances.

“They were empathetic. They said, ‘I completely understand.’ They tried to give answers. They acted in good faith. But really, none of the hospitals were really able to say what we were hoping for, which is to unequivocally state that they would stand behind their clinicians and that clinicians at their facilities would be able to use their best clinical judgment for the individual case and that it would be made as medical decisions should be in collaboration with the patient, taking into account to their needs, their preferences and their values,” she said.

“We are recognizing that hospitals and clinicians are in an untenable situation,” Heisler added.

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More people with Down syndrome are living longer, but medical systems aren’t keeping up | CNN


Montrose, Missouri
KFF
 — 

It took Samantha Lesmeister’s family four months to find a medical professional who could see that she was struggling with something more than her Down syndrome.

The young woman, known as Sammee, had become unusually sad and lethargic after falling in the shower and hitting her head. She lost her limited ability to speak, stopped laughing, and no longer wanted to leave the house.

General-practice doctors and a neurologist said such mental deterioration was typical for a person with Down syndrome entering adulthood, recalled her mother, Marilyn Lesmeister. They said nothing could be done.

The family didn’t buy it.

Marilyn researched online and learned the University of Kansas Health System has a special medical clinic for adults with Down syndrome. Most other Down syndrome programs nationwide focus on children, even though many people with the condition now live into middle age and often develop health problems typically associated with seniors. And most of the clinics that focus on adults are in urban areas, making access difficult for many rural patients.

The clinic Marilyn found is in Kansas City, Kansas, 80 miles northwest of the family’s cattle farm in central Missouri. She made an appointment for her daughter and drove up.

The program’s leader, nurse practitioner Moya Peterson, carefully examined Sammee Lesmeister and ordered more tests.

“She reassured me that, ‘Mom, you’re right. Something’s wrong with your daughter,’” Marilyn Lesmeister said.

With the help of a second neurologist, Peterson determined Sammee Lesmeister had suffered a traumatic brain injury when she hit her head. Since that diagnosis about nine years ago, she has regained much of her strength and spirit with the help of therapy and steady support.

Sammee, now 27, can again speak a few words, including “hi,” “bye,” and “love you.” She smiles and laughs. She likes to go out into her rural community, where she helps choose meals at restaurants, attends horse-riding sessions at a stable, and folds linens at a nursing home.

Without Peterson’s insight and encouragement, the family likely would have given up on Sammee’s recovery. “She probably would have continued to wither within herself,” her mother said. “I think she would have been a stay-at-home person and a recluse.”

The Lesmeisters wish Peterson’s program wasn’t such a rarity. A directory published by the Global Down Syndrome Foundation lists just 15 medical programs nationwide that are housed outside of children’s hospitals and that accept Down syndrome patients who are 30 or older.

The United States had about three times as many adults with the condition by 2016 as it did in 1970. That’s mainly because children born with it are no longer denied lifesaving care, including surgeries to correct birth defects.

Adults with Down syndrome often develop chronic health problems, such as severe sleep apnea, digestive disorders, thyroid conditions, and obesity. Many develop Alzheimer’s disease in middle age. Researchers suspect this is related to extra copies of genes that cause overproduction of proteins, which build up in the brain.

“Taking care of kids is a whole different ballgame from taking care of adults,” said Peterson, the University of Kansas nurse practitioner.

Sammee Lesmeister is an example of the trend toward longer life spans. If she’d been born two generations ago, she probably would have died in childhood.

She had a hole in a wall of her heart, as do about half of babies with Down syndrome. Surgeons can repair those dangerous defects, but in the past, doctors advised most families to forgo the operations, or said the children didn’t qualify. Many people with Down syndrome also were denied care for serious breathing issues, digestive problems, or other chronic conditions. People with disabilities were often institutionalized. Many were sterilized without their consent.

Such mistreatment eased from the 1960s into the 1980s, as people with disabilities stood up for their rights, medical ethics progressed, and courts declared it illegal to withhold care. “Those landmark rulings sealed the deal: Children with Down syndrome have the right to the same lifesaving treatment that any other child would deserve,” said Brian Skotko, a Harvard University medical geneticist who leads Massachusetts General Hospital’s Down Syndrome Program.

The median life expectancy for a baby born in the U.S. with Down syndrome jumped from about four years in 1950 to 58 years in the 2010s, according to a recent report from Skotko and other researchers. In 1950, fewer than 50,000 Americans were living with Down syndrome. By 2017, that number topped 217,000, including tens of thousands of people in middle age or beyond.

The population is expected to continue growing, the report says. A few thousand pregnant women a year now choose abortions after learning they’re carrying fetuses with Down syndrome. But those reductions are offset by the increasing number of women becoming pregnant in their late 30s or 40s, when they are more likely to give birth to a baby with Down syndrome.

Skotko said the medical system has not kept up with the extraordinary increase in the number of adults with Down syndrome. Many medical students learn about the condition only while training to treat pediatric patients, he said.

Few patients can travel to specialized clinics like Skotko’s program in Boston. To help those who can’t, he founded an online service, Down Syndrome Clinic to You, which helps families and medical practitioners understand the complications and possible treatments.

Charlotte Woodward, who has Down syndrome, is a prominent advocate for improved care. She counts herself among the tens of thousands of adults with the condition who likely would have died years ago without proper treatment. Woodward, 33, of Fairfax, Virginia, had four heart surgeries as a child and then a heart transplant in her 20s.

Woodward, who is an education program associate for the National Down Syndrome Society, has campaigned to end discrimination against people with disabilities who need organ transplants.

She said her primary care doctor is excellent. But she has felt treated like a child by other health care providers, who have spoken to her parents instead of to her during appointments.

She said many general-practice doctors seem to have little knowledge about adults with Down syndrome. “That’s something that should change,” she said. “It shouldn’t just be pediatricians that are aware of these things.”

Woodward said adults with the condition should not be expected to seek care at programs housed in children’s hospitals. She said the country should set up more specialized clinics and finance more research into health problems that affect people with disabilities as they age. “This is really an issue of civil rights,” she said.

Advocates and clinicians say it’s crucial for health care providers to communicate as much as possible with patients who have disabilities. That can lead to long appointments, said Brian Chicoine, a family practice physician who leads the Adult Down Syndrome Center of Advocate Aurora Health in Park Ridge, Illinois, near Chicago.

“It’s very important to us that we include the individuals with Down syndrome in their care,” he said. “If you’re doing that, you have to take your time. You have to explain things. You have to let them process. You have to let them answer. All of that takes more time.”

Time costs money, which Peterson believes is why many hospital systems don’t set up specialized clinics like the ones she and Chicoine run.

Peterson’s methodical approach was evident as she saw new patients on a recent afternoon at her Kansas City clinic. She often spends an hour on each initial appointment, speaking directly to patients and giving them a chance to share their thoughts, even if their vocabularies are limited.

Her patients that day included Christopher Yeo, 44, who lives 100 miles away in the small town of Hartford, Kansas. Yeo had become unable to swallow solid food, and he’d lost 45 pounds over about 1½ years. He complained to his mother, Mandi Nance, that something “tickled” in his chest.

During his exam, he lifted his shirt for Peterson, revealing the scar where he’d had heart surgery as a baby. He grimaced, pointed to his chest, and repeatedly said the word “gas.”

Peterson looked Yeo in the eye as she asked him and his mother about his discomfort.

The nurse practitioner takes seriously any such complaints from her patients. “If they say it hurts, I listen,” she said. “They’re not going to tell you about it until it hurts bad.”

Nurse practitioner Moya Peterson speaks to Christopher Yeo of Hartford, Kansas. Peterson leads an rare clinic for adults with Down syndrome.

Yeo’s mother had taken him to a cardiologist and other specialists, but none had determined what was wrong.

Peterson asked numerous questions. When does Yeo’s discomfort seem to crop up? Could it be related to what he eats? How is his sleep? What are his stools like?

After his appointment, Peterson referred Yeo to a cardiologist who specializes in adults with congenital heart problems. She ordered a swallowing test, in which Yeo would drink a special liquid that appears on scans as it goes down. And she recommended a test for Celiac disease, an autoimmune disorder that interferes with digestion and is common in people with Down syndrome. No one had previously told Nance about the risk.

Nance, who is a registered nurse, said afterward that she has no idea what the future holds for their family. But she was struck by the patience and attention Peterson and other clinic staff members gave to her son. Such treatment is rare, she said. “I feel like it’s a godsend. I do,” she said. “I feel like it’s an answered prayer.”

Peterson serves as the primary care provider for some of her patients with Down syndrome. But for many others, especially those who live far away, she is someone to consult when complications arise. That’s how the Lesmeisters use her clinic.

Mom Marilyn is optimistic Sammee can live a fulfilling life in their community for years to come. “Some people have said I need to put her in a home. And I’m like, ‘What do you mean?’ And they say, ‘You know ― a home,’” she said. “I’m like, ‘She’s in a home. Our home.’”

Sammee’s sister, who lives in Texas, has agreed to take her in when their parents become too old to care for her.

Marilyn’s voice cracked with emotion as she expressed her gratitude for the help they have received and her hopes for Sammee’s future.

“I just want her to be taken care of and loved like I love her,” she said. “I want her to be taken care of like a person, and not a condition.”

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To protect kids from tobacco, pediatricians say, focus should be on quitting — or never starting | CNN



CNN
 — 

Although smoking rates for adults in the US are at their lowest recorded levels, more must be done to stop children from using tobacco, according to a new set of policy statements from the American Academy of Pediatrics.

The statements, published Monday, are the association’s first tobacco policy update since 2015. They’re based on newer science and better reflect how many children now use e-cigarettes as more kid-friendly products have flooded the market.

AAP policy statements are created by expert pediatricians to help leaders craft more effective public health policy and to guide physicians on how to keep kids safe – in this case, from tobacco.

Researchers have been telling Americans for generations that tobacco products are bad for them, yet nearly 200 US children take up smoking every day, according to the US Centers for Disease Control and Prevention.

Tobacco use is the No. 1 cause of preventable death in the United States, the CDC says.

The rates of kids who use e-cigarettes are high, the AAP says, and the use of hookahs and cigars has not declined. However, the pediatricians note, traditional cigarette smoking has declined over the years.

Specifically, in 2022, nearly 5% of middle school and about 17% of high school students reported some form of current tobacco use, according to the CDC. In 2021, about 11% of middle schoolers and 34% of high schoolers said they had ever tried tobacco.

These “try rates” are important because most adult smokers started at young ages, according to the CDC.

And in smoking rates remain disproportionately high in certain communities, including those who are Black, Hispanic, Native American, Alaska Native or LGBTQ+.

In its updated policy statements, the AAP continues to encourage pediatricians to screen for tobacco use as part of a child’s regular checkup. A talk about tobacco should start no later than age 11 or 12, the report says.

For kids who want to quit tobacco, pediatricians should refer them to behavioral interventions like counseling or prescribe nicotine replacement therapy, which has been shown to be effective with children who have moderate or severe tobacco addiction.

That practice has shifted over the years, according to Dr. Susan Walley, co-author of the new policy statements. In medical school, she said, her professors didn’t talk much about smoking except to tell people to quit.

“Now, we know it’s an addiction and a chronic medical disease. Telling someone just to quit would be like telling somebody who’s diabetic, ‘you just need to think about making your blood sugar better.’ We’ve learned so much,” said Walley, a pediatrician at Children’s National in Washington, D.C.

The new report notes that children who smoke cigarettes should not be encouraged to use e-cigarettes as an alternative. Some experts have argued that e-cigarettes are a good smoking cessation tool, but the AAP says evidence is lacking.

At the checkup, pediatricians should also ask caregivers about their tobacco habits and make recommendations. Nearly 40% of kids are regularly exposed to secondhand smoke, the AAP says, and caregiver use is the biggest reason children are exposed to secondhand smoke.

In children, secondhand smoke can lead to respiratory and ear infections and asthma attacks. Since 1964, more than 2.5 million nonsmokers who didn’t smoke have died from health problems caused by exposure to secondhand smoke, according to the CDC.

The AAP is urging the US Food and Drug Administration to better regulate all tobacco and nicotine products and the federal government to fund child-specific tobacco prevention, screening and treatment programs.

Despite getting nearly $27 billion from a tobacco settlement and tobacco taxes this year, states shortchange programs designed to prevent kids from using tobacco products and help people quit, according to the Campaign for Tobacco-Free Kids.

The AAP recommends raising the prices on tobacco products, as higher prices can act as a deterrent for young users.

Taxes are also considered one of the most effective ways to reduce smoking, particularly among children, studies have found. However, Congress hasn’t raised federal tobacco taxes in 14 years. The federal cigarette tax remains $1.01 per pack, and taxes vary for other tobacco products. No state increased its cigarette taxes in 2022, either.

The AAP policy statements on tobacco recommend a total flavor ban, including menthol.

In April, the FDA proposed eliminating two tobacco products popular with children: flavored cigars and menthol cigarettes. But it could be years before that becomes a reality, as even if that rule is finalized this year, manufacturers will probably sue to keep it from going into effect.

Tobacco companies have long used menthol to mask the unpleasant flavors of their products. Studies show that it makes the products more attractive to new users and makes it harder for people to quit.

Tobacco companies are also frequently introducing flavored products in child-friendly disposable vapes in flavors like blue raspberry and sour apple.

“Sadly, they also have very, very high levels of nicotine. Just the tobacco products themselves, they have really exploded. Part of it is the lack of regulation, and then on top of that, there’s these new oral nicotine products that are unfortunately gaining a lot of popularity from our youth,” Walley said.

Walley is optimistic that more children can quit tobacco or not start in the first place, but she knows that pediatricians have their work cut out for them, based on what her sons tell her about school.

“I’m a parent of three boys, and when I hear from my boys [that] they don’t want to go to the bathroom because people will be vaping in there, it just breaks my heart that they’re not having a bathroom break all day because of that,” she said. “That kids are so addicted that they have to sneak away to the bathroom, or they are vaping in class using some covert pieces of clothing, shows this really is a public health crisis.

“We at the AAP want to make sure that people remember, this is one of the most modifiable things in terms of social determinants of health,” Walley said. “A lot of the social determinants of health, we really can’t control, but whether you use tobacco or whether you start using tobacco is something that we can do something about.”

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‘Big step forward’: New lab tests may accelerate Parkinson’s diagnosis and research | CNN



CNN
 — 

A lab test that can tell doctors if someone has Parkinson’s disease is a long-sought goal of researchers.

Doctors currently diagnose the progressive condition by looking for telltale physical symptoms: tremors, a halting gait, stiffness or trouble balancing. About 90,000 Americans are diagnosed on the basis of these symptoms each year, according to a recent study.

These signs can be subtle at first, and it can be difficult to discriminate Parkinson’s from other disorders until the disease is more advanced and affects more of the brain.

The lack of a lab test that can pick up the disease in its early stages has also stymied the search for new treatments. Studying a group of people with the same movement symptoms could mean inadvertently including those whose condition could be caused by something else.

It also means people are usually studied when the disease process is well under way. Many therapies work best when they’re given at the first sign of symptoms, or even before.

All this may soon change, thanks to new tests that are able to detect traces of a key protein that misfolds and gums up specific areas of the brain, called alpha-synuclein.

One test, SYNTap, which looks for seeds of this misfolded protein in spinal fluid, was just vetted in the Parkinson’s Progression Marker’s Initiative, a large study undertaken by the Michael J. Fox Foundation. Several companies are developing versions of this type of test.

It joins another test called Syn-One, which detects traces of the protein in skin. Syn-One has been available since 2019 and is being studied with funding from the National Institutes of Health.

When they return positive results, the new tests don’t diagnose Parkinson’s disease but rather point to a group of disorders caused by abnormal clumping of the alpha-synuclein protein. Those include dementia with Lewy bodies and multiple system atrophy, a rare disorder that causes damage to several areas of the brain. Parkinson’s is the most common of these disorders.

Parkinson’s affects the nervous system and, in addition to movement-related symptoms, can cause problems such as depression, anxiety, cognitive impairment, trouble sleeping, hallucinations and loss of smell. It’s not fatal, but it can have serious complications. The exact cause is largely unknown.

The tests usher in “a bit of a new chapter for us in Parkinson’s disease, where we can really focus on biology,” said Dr. Kathleen Poston, a professor of neurology and neurological sciences at Stanford University, who participated in a study of the SYNTap test.

“I think that will very hasten our engagement and clinical trials and, I hope, allow us to have more successful therapeutic clinical trials in in the next five years,” Poston said.

The test is available to doctors, but it had not been shown to be reliable in a large clinical trial.

In a study published Wednesday in the journal Lancet Neurology, the SYNTap test proved to be accurate when given to 1,100 participants, including people with Parkinson’s, people with genetic or clinical risk factors who had not been diagnosed, and healthy controls. Overall, the test correctly identified people with Parkinson’s disease 88% of the time and correctly ruled it out 96% of the time.

“It shows that this method is fairly accurate for detecting Parkinson’s disease, even in patients who do not yet have symptoms,” said Dr. Andrew Ko, a neurosurgeon at the University of Washington School of Medicine who was not involved in the research. “This is a big step forward showing that this type of test is accurate.”

The test was most accurate in people without any known genetic risks for Parkinson’s disease, who also had loss of their sense of smell. In this group, the test correctly detected the disease 99% of the time. If they didn’t have a loss of smell, the accuracy dropped to 78%.

In people with the most common genetic risk, a mutation in their LRRK2 gene, the test correctly flagged Parkinson’s only about 67% of the time.

That means the test is very good at ruling out Parkinson’s, but it will miss some people who actually do have it.

“If you had this test and it was ‘normal’ or negative … it doesn’t mean you don’t have Parkinson’s disease,” said Dr. Kelly Mills, a neurologist and director of the Movement Disorders Division at Johns Hopkins University, who was not involved in the research.

For the time being, that means the test itself won’t be so helpful to individual patients.

“I think it’s a big deal for research, which is going to be a huge deal for patients,” Mills said.

The study’s authors agree.

“Right now, the test has sort of only a modest utility in routine clinical care,” said study author Dr. Andrew Siderowf, a neurologist at the University of Pennsylvania’s Perlman School of Medicine.

Parkinson’s treatment is based on relieving symptoms, and all the test can do is to help a doctor refine a diagnosis. It won’t change how a patient is treated, but it might bring some people peace of mind that their diagnosis is correct, Siderowf said.

It’s also a very invasive test that requires a painful procedure called a spinal tap, although researchers hope to soon translate their results to other kind of biological samples, such as blood or saliva, that would be easier to collect.

One of the most promising results of the study was in people who had early changes that are known to be strongly tied to the development of Parkinson’s disease. In 18 people who had lost their sense of smell, the test detected alpha-synuclein in 16. In another group of 33 people with REM sleep behavior disorder, which makes people kick, punch or hit in their sleep as they act out their dreams, the test detected alpha-synuclein in 28.

Because this group was so small, the researchers say, those tests will have to be repeated to learn whether it can detect the disease before movement is impaired.

But that is the goal, according to the study’s funders at the Michael J. Fox Foundation, who believe that this test will revolutionize research.

“We have a really robust current pipeline of therapeutics that are looking to interfere with the the biology and the disease,” said Deborah Brooks, CEO of the foundation. “We will continue at a rapid and aggressive pace,” she said.

Brooks said that when they learned the results of the SYNTap tests, she flew out to see actor and philanthropist Fox, who was vacationing with his family, to tell him personally. Fox has been living with Parkinson’s since 1991.

Together, they called one of the foundation’s scientists, Dr. Todd Sherer, a neuroscientist who is also the foundation’s chief mission officer.

“I said, ‘so, you know, Todd’s calling in, but he’s gonna tell you all the details. I’m just gonna give you the headline: We’ve had a breakthrough,’ ” Brooks said.

Fox and Sherer had been searching for a biomarker for the condition for over a decade.

When Sherer finished his presentation, Brooks said, Fox leaned over, picked up the laptop and kissed him on the head.

“This is awesome,” he said.

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Clinics and doctors brace for more restrictions on women’s health care after court ruling on abortion drug | CNN



CNN
 — 

Less than a year after the US Supreme Court ended legal protection for abortions nationwide, clinics that provide reproductive health care across the United States are bracing for more restrictions on the care they provide to women.

If a judge’s ruling takes effect Friday, it may soon be illegal for doctors to prescribe mifepristone, the first in a two-drug regimen that can help women terminate a pregnancy at home – and that has other uses.

At Northeast Ohio Women’s Center, staffers are calling patients who expected to get medication abortions next week, telling them to change their plans.

“They’re scrambling to change their schedules to get in to see us earlier,” said Dr. David Burkons, the physician who runs the clinics.

About half of abortions in the US use mifepristone, which is sold under the brand name Mifeprex.

Mifeprex blocks the hormone progesterone, which effectively stops a pregnancy from continuing. For an abortion, women take mifepristone first, followed one or two days later by misoprostol, a drug that causes the uterus to contract, cramp and bleed, similar to a heavy period. It empties out the uterus, ending the pregnancy. It can be used up to 10 weeks of pregnancy.

But the uses of mifepristone go beyond abortion.

The drug helps soften and open the cervix, the neck of the uterus, and doctors depend on it to help when women are having a miscarriage and when a pregnancy needs to be terminated quickly if the life of the mother is at stake.

In certain situations, when a pregnancy has become too risky, time is of the essence, says Dr. Alison Edelman, who directs the division of Complex Family Planning at Oregon Health and Sciences University.

“The more expediently that we can have somebody not be pregnant, the better, and mifepristone helps us speed that process up and make it safer for patients,” she said.

Doctors also use mifepristone before procedures in which they need to go into the uterus, such as to remove bleeding polyps. Studies have shown that the drug helps reduce the amount of force needed to open the cervix and reduces the amount of blood loss associated with the procedure.

Studies also show that mifepristone has moderate to strong benefits for inducing labor and treating uterine fibroids and endometriosis, sometimes helping avoid surgery, according to the American Society of Health Systems Pharmacists.

It can be used to prevent bleeding between periods and to control hyperstimulation of the ovaries during in-vitro fertilization, the society said in a statement.

Doctors say they still have other ways to treat those problems, but when considering the needs of individual patients, they will be missing a valuable tool.

“We have our gold standard of what we provide – the safest, most effective regimen – and then if it’s not available, we use the next best one. And that’s what we would be left with,” Edelman said.

Mifepristone has been approved by the US Food and Drug Administration for 23 years, and it has been used by over 5 million women in the United States. FDA data shows that less than 1% of women who take it have significant adverse events. A CNN analysis of FDA data found that mifepristone was even less risky than some other common medications, including Viagra and penicillin.

Medication abortions have become an increasingly important option for women in states that restricted abortion access after the Supreme Court’s ruling last year that ended legal protections for abortions in every state. They are also sometimes the only kind of abortion many women can get in rural areas that have lost abortion providers.

This ease of access has also made the medication regimen a target for abortion opponents.

“They want to see a national ban, and this is in fact what they are going for in this case,” said Kristen Moore, director of the EMAA Project, a nonprofit that is seeking to make it easier to get abortion medications in the US.

What will happen next is far from settled. Appeals have been filed to stop the ruling in Texas from taking hold, and higher courts will have to weigh in.

Even if the court does take mifepristone off the market in the US, doctors say, they will still be able to provide medication abortions using misoprostol alone.

In fact, some abortion providers have been planning on using misoprostol by itself in case mifepristone is isn’t available.

Carafem, which provides telehealth abortion care, has been offering a misoprostol-only regimen since the Covid-19 pandemic began, Chief Operating Officer Melissa Grant says.

“In 2020, we started to use misoprostol alone as an option,” she said. Workers have since been tweaking the regimen and gathering data.

“We now feel confident that, even though we would much prefer to use both, that we can use misoprostol alone effectively and are ready to switch gears to have a higher percentage of our clients or even 100% of our colleagues use that option if necessary,” Grant said.

Still, some providers said it’s not ideal.

The misoprostol-only regimen is slightly less effective than the one that uses both drugs, and it causes more cramping and bleeding, which can mean more complications.

“We’re more likely to see failures and therefore more likely to need surgical intervention after misoprostol alone,” said Dr. Erika Werner, chair of the Department of Obstetrics and Gynecology at Tufts Medical Center.

Still, doctors want women to know that medication abortions and miscarriage care will still be available even if mifepristone isn’t. And they hope that higher courts will intervene to keep this medication on pharmacy shelves.

“The clinicians would have to use these other options instead of choosing based on their own expertise, knowledge and judgment when rendering such care,” Dr. Iffath Hoskins, president of the American Congress of Obstetricians and Gynecologists, said Monday. “Frankly, as a clinician, I do not want to be in that position.”

Correction: This story has been updated to include the correct name of Tufts Medical Center.

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