Recently identified inflammatory disease VEXAS syndrome may be more common than thought, study suggests | CNN



CNN
 — 

David Adams spent half a decade fighting an illness he couldn’t name. He was in and out of the hospital several times per year. His inflamed joints made his hands feel like they had been squeezed into gloves – and he could no longer play his beloved classical and jazz guitars.

He had constant fevers and fatigue. He even developed pain and swelling in his genitalia, which was his first sign that something was really wrong.

“At the turn of the year 2016, I started with some really painful effects in the male anatomy,” said Adams, now 70. “After that, again, a lot of fatigue – my primary care physician at that point had blood tests done, and my white blood cell count was very, very low.”

Next, Adams, who lives in Alexandria, Virginia, saw a hematologist, a pulmonologist, a urologist, a rheumatologist and then a dermatologist. Some of them thought he might have cancer.

Adams’ symptoms continued, with even more fatigue, pneumonia and a large rash below his waist. He tried at least a dozen medications, saw about two dozen doctors, and nothing helped.

In 2019, worsening symptoms forced him to retire early from his decades-long career in clinical data systems. But he remained in the dark about what was causing the problems.

Finally, in 2020, scientists at the National Institutes of Health discovered and named a rare genetic disorder: VEXAS syndrome, which wreaks havoc on the body through inflammation and blood problems.

Adams had an appointment with his rheumatologist at the time, and when he walked into the office, he saw that his physician “was giddy like a little kid.”

In his doctor’s hands was a copy of a paper in the New England Journal of Medicine detailing the discovery of VEXAS syndrome.

Adams had his answer.

“For the first time, there was a one-to-one correlation of symptoms,” he said. “It was quite a shock.”

An estimated 1 in about 13,500 people in the United States may have VEXAS syndrome, a new study suggests, which means the mysterious and sometimes deadly inflammatory disorder may be more common than previously thought.

In comparison, the genetic disorder spinal muscular atrophy affects about 1 in 10,000 people and Huntington’s disease occurs in about 1 in every 10,000 to 20,000 people.

Since its discovery, occasional VEXAS cases have been reported in medical research, but the study reveals new estimates of its prevalence.

The research, published Tuesday in the journal JAMA, suggests that about 1 in 13,591 people in the US have mutations in the UBA1 gene, which develop later in life and cause VEXAS syndrome.

“This study is demonstrating that there’s likely tens of thousands of patients in the US that have this disease, and the vast majority of them are probably not being recognized because physicians aren’t really considering this as a diagnosis more broadly,” said Dr. David Beck, an assistant professor in the Department of Medicine at NYU Langone Health and a lead author of the study.

VEXAS syndrome is not inherited, so people who have it don’t pass the disease to their children. But the UBA1 gene is on the X chromosome, so the syndrome is an X-linked disease. It predominantly affects men, who carry only one X chromosome. Women have two X chromosomes, so if they have a mutation in a gene on one X chromosome but not the other, they are generally unaffected.

“It’s present in 1 in 4,000 men over the age of 50. So we think it’s a disease that should be thought about in terms of testing for individuals that have the symptoms,” said Beck, who also led the federal research team that identified the shared UBA1 mutation among VEXAS patients in 2020.

“The benefit of VEXAS syndrome is that we have a test. We have a genetic test that can help directly provide the diagnosis,” he said. “It’s just a question of patients who meet the criteria – who are older individuals with systemic inflammation, low blood counts, who really aren’t responding to anything but steroids – then advocating to their doctors to get genetic testing to get a diagnosis.”

Adams, who became a patient of Beck’s, said that finally getting a diagnosis – and understanding the cause of his symptoms – was life-changing.

“It really was incredibly freeing to have the diagnosis,” he said.

“You can’t fight your enemy unless your enemy has a name,” he added. “We finally had something where we could point to and say, ‘OK, we understand what’s going on. This is VEXAS.’ “

For the new study, Beck and his colleagues at the NIH, New York University, Geisinger Research and other institutions analyzed data on 163,096 patients in a health system in central and northeastern Pennsylvania, from January 1996 to January 2022, including electronic health records and blood samples.

Eleven of the patients had a disease-causing UBA1 variant, and a 12th person had a “highly suspicious” variant.

Only three of the 12 are still alive. A five-year survival rate of 63% has been previously reported with VEXAS.

Among the 11 patients in the new study who had pathogenic variants in UBA1, only two were women. Seven had arthritis as a symptom, and four had been diagnosed with rheumatologic diseases, such as psoriasis of the skin or sarcoidosis, which causes swollen lumps in the body. All had anemia or low blood cell counts.

“None had been previously clinically diagnosed with VEXAS syndrome,” Beck said.

The finding “is emphasizing how it’s important to be able to pick these patients out, give them the diagnosis and start the aggressive therapies or aggressive treatments to keep their inflammation in check,” he said.

VEXAS – an acronym for five clinical characteristics of the disease – has no standardized treatment or cure, but Beck said symptoms can be managed with medications like the steroid prednisone or other immunosuppressants.

“But the toxicities of prednisone over years is challenging. There are other anti-inflammatory medications that we use, but they’re only partially effective at the moment,” he said. “One treatment for individuals that we’ve seen that’s very effective is bone marrow transplantation. That comes with its own risks, but that’s just underscoring the severe nature of the disease.”

Although the new study helps provide estimates of the prevalence and symptoms of VEXAS syndrome, the data is not representative of the entire United States, and Beck said that more research needs to be done on a larger, more diverse group of people.

Some men might be hesitant to seek medical care for VEXAS symptoms, but Adams said that doing so could save their life.

“Eventually, it’s going to get so bad that you’ll end up like my first hospitalization, where you’re on death’s door,” Adams said. “You don’t want to be in that situation.”

Adams has been taking prednisone to ease his symptoms, and it’s helped. But because steroid use can have side effects such as cataracts and weight gain, he has been working with his doctors to find other therapies so he can reduce his intake of the medication.

Beck and his colleagues are studying targeted therapies for VEXAS syndrome, as well as conducting stem cell bone marrow transplant trials at the NIH.

“There are many different facets of the disease,” Dr. Bhavisha Patel, a hematologist and researcher in the National Heart, Lung and Blood Institute’s Hematopoiesis and Bone Marrow Failure Laboratory, said in an NIH news release last month.

“I believe that is what is challenging when we think about treatment, because it’s so heterogeneous,” said Patel, who was not involved in the new study.

“Both at NIH and worldwide, the groups that have dedicated themselves to VEXAS are looking for medical therapies to offer to other patients who don’t qualify for a bone marrow transplant,” she said. “We continue to collaborate on many projects in order to categorize this disease further and ultimately come up with the best treatment options.”

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Many women underestimate breast density as a risk factor for breast cancer, study shows | CNN



CNN
 — 

Dense breast tissue has been associated with up to a four times higher risk of breast cancer. However, a new study suggests few women view breast density as a significant risk factor.

The study, published in JAMA Network Open, surveyed 1,858 women ages 40 to 76 years from 2019 to 2020 who reported having recently undergone mammography, had no history of breast cancer and had heard of breast density.

Women were asked to compare the risk of breast density to five other breast cancer risk factors: having a first-degree relative with breast cancer, being overweight or obese, drinking more than one alcoholic beverage per day, never having children and having a prior breast biopsy.

“When compared to other known and perhaps more well-known breast cancer risks, women did not perceive breast density as significant of a risk,” said Laura Beidler, an author of the study and researcher at the Dartmouth Institute for Health Policy and Clinical Practice.

For example, the authors report that dense breast tissue is associated with a 1.2 to four times higher risk of breast cancer compared with a two times higher risk associated with having a first-degree relative with breast cancer – but 93% of women said breast density was a lesser risk.

Dense breasts tissue refers to breasts that are composed of more glandular and fibrous tissue than fatty tissue. It is a normal and common finding present in about half of women undergoing mammograms.

The researchers also interviewed 61 participants who reported being notified of their breast density and asked what they thought contributes to breast cancer and how they could reduce their risk. While most women correctly noted that breast density could mask tumors on mammograms, few women felt that breast density could be a risk factor for breast cancer.

Roughly one-third of women thought there was nothing they could do to reduce their breast cancer risk, although there are several ways to reduce risk, including maintaining a healthy, active lifestyle and minimizing alcohol consumption.

Breast density changes over a woman’s lifetime, and is generally higher in women who are younger, have a lower body weight, are pregnant or breastfeeding, or are taking hormone replacement therapy.

The level of breast cancer risk increases with the degree of breast density; however, experts aren’t certain why this is true.

“One hypothesis has been that women who have more dense breast tissue also have higher, greater levels of estrogen, circulating estrogen, which contributes to both the breast density and to the risk of developing breast cancer,” said Dr. Harold Burstein, a breast oncologist at the Dana-Farber Cancer Institute who was not involved in the study. “Another hypothesis is that there’s something about the tissue itself, making it more dense, that somehow predisposes to the development of breast cancer. We don’t really know which one explains the observation.”

Thirty-eight states currently mandate that women receive written notification about their breast density and its potential breast cancer risk following mammography; however, studies have shown that many women find this information confusing.

“Even though women are notified usually in writing when they get a report after a mammogram that says, ‘You have increased breast density,’ it’s kind of just tucked in there at the bottom of the report. I’m not sure that anyone is explaining to them, certainly in person or verbally, what that means,” said Dr. Ruth Oratz, a breast oncologist at NYU Langone’s Perlmutter Cancer Center who was not involved in the study.

“I think what we’ve learned from this study is that we have to do a better job of educating not only the general public of women, but the general public of health care providers who are doing the primary care, who are ordering those screening mammograms,” she added.

Current screening guidelines recommend women of average risk of breast cancer undergo breast cancer screening every one to two years between ages 50 to 74 with the option of beginning at age 40.

Because women with dense breast tissue are considered to have higher than average cancer risks, the authors of the study suggest women with high breast density may benefit from supplemental screening like breast MRI or breast ultrasound, which may detect cancers that are missed on mammograms. Currently, coverage of supplemental screening after the initial mammogram varies, depending on the state and insurance policy.

The authors warn that “supplemental screening not only can lead to increased rates of cancer detection but also may result in more false-positive results and recall appointments.” They say clinicians should use risk assessment tools when discussing tradeoffs associated with supplemental screening.

“Usually, it’s a discussion between the patient, the clinical team, and the radiologist. And it’ll be affected by prior history, by whether there’s anything else of concern on the mammogram, by the patient’s family history. So those are the kinds of things we discuss frequently with patients who are in such situations,” Burstein said.

Breast cancer screening recommendations differ between medical organizations, and experts say women at higher risk due to breast density should discuss with their doctor what screening method and frequency are most appropriate.

“I think it’s really, really important that everyone understands – and this is the doctors, the nurses, the women themselves – that screening is not a one size fits all recommendation. We cannot just make one general recommendation to the entire population because individual women have different levels of risks of developing breast cancer,” Oratz said.

For the nearly one-third of women with dense breast tissue that reported there was nothing they could do to prevent breast cancer, experts say there are some steps you can take to reduce your risk.

“Maintaining an active, healthy lifestyle and minimizing alcohol consumption address several modifiable factors. Breastfeeding can decrease the risk. On the other hand, use of hormone replacement therapy increases breast cancer risk,” said Dr. Puneet Singh, a breast surgical oncologist at the MD Anderson Cancer Center who was not involved in the study.

The researchers add that there are approved medications, such as tamoxifen, that can be given for those at significantly increased risk that may reduce the chances of breast cancer by about half.

Finally, breast cancer doctors say that in addition to appropriate screening, knowing your risk factors and advocating for yourself can be powerful tools in preventing and detecting breast cancer.

“At any age, if any woman feels uncomfortable about something that’s going on in her breast, if she has discomfort, notices a change in the breast, bring that to the attention of your doctor and make sure it gets evaluated and don’t let somebody just brush you off,” Oratz said.

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Pediatricians are giving out free gun locks to approach the gun violence epidemic as a public health crisis | CNN



CNN
 — 

In a triage waiting room of St. Louis Children’s Hospital in Missouri, a clear basket filled with gun locks sits near the walkway, just noticeable enough to those passing by.

The hospital staff calls it the “No Questions Asked” basket, to encourage gun safety without having to confront gun owners about what can be a sensitive and divisive topic. It holds an assortment of cable gun locks free of charge, available to those who need them, alongside pamphlets explaining how to properly and safely store firearms.

The initiative, aimed at reducing the stigma of addressing gun safety, is part of a growing effort by medical professionals who are treating the country’s gun violence epidemic as a public health crisis.

“It takes standing at the bedside of one child who has been shot to realize that we all have to do more and as the leading cause of death for children in this country, pediatricians need to be front and center of the solution, of all the solutions,” said Dr. Annie Andrews, a professor of pediatrics at the Medical University of South Carolina and an expert on gun violence prevention.

Over the course of two years, thousands of gun locks have been taken from the basket, according to Dr. Lindsay Clukies, a pediatric emergency medicine physician at the hospital.

In the coming weeks, baskets filled with free gun locks will be available at more than 17 locations operated by BJC HealthCare, an organization serving metro St. Louis, mid-Missouri and Southern Illinois, Clukies said. It’s a low-cost and effective way to easily distribute firearm safety devices.

“We’ve had employees as well as patients take our locks, also their families and even a grandmother who took one for her grandson. It’s for anyone who needs them,” Clukies told CNN. In recent years, a rising number of pediatricians across the country have been engaging with the topic of gun safety in medical settings by focusing on safety and prevention, already a natural aspect of their work.

During patient visits, it’s increasingly common for pediatricians to ask the patient’s parents if there are guns at home, and if so, how they are stored. Some hospitals then offer free gun locks, often sourced from donations or police departments and paired with safe storage education.

Some pediatricians, who bear witness to the effects of gun violence on children in their workplace every day, told CNN they see it as their obligation as medical professionals to be part of the solution to the epidemic.

In 2022, 1,672 children and teenagers under 17 were killed by gun violence and 4,476 were injured, according to the Gun Violence Archive, a nonprofit organization tracking injuries and deaths by gunfire since 2014.

“We have just as an important voice in this conversation as anyone else because we’re the ones who have invested our entire careers to protecting children and ensuring that children can grow up to be the safest healthiest version of themselves,” said Andrews.

“It is only natural that we see these things that we understand that they’re preventable, and we want to get involved in finding the solutions,” she added.

So far in 2023, high-profile incidents of children accessing firearms have heeded calls for stronger, more consistent laws nationwide, requiring adults to safely secure their guns out of the reach of children and others unauthorized to use them. They have also highlighted a lack of public education on the responsibility of gun owners to store their guns unloaded, locked and away from ammunition, CNN previously reported.

In early January, a 6-year-old boy was taken into police custody after he took a gun purchased by his mother from his home, brought it to school and shot his teacher at Richneck Elementary School in Newport News, Virginia, police said. Just over a week later, a man was arrested in Beech Grove, Indiana, after video was shown on live TV of a toddler, reportedly the man’s son, waving and pulling the trigger of a handgun, CNN previously reported.

Hundreds of children in the US every year gain access to firearms and unintentionally shoot themselves or someone else, according to research by Everytown for Gun Safety, a leading non-profit organization focusing on gun violence prevention. In 2022, there were 301 unintentional shootings by children, resulting in 133 deaths and 180 injuries nationally, Everytown data showed.

Firearm injuries are now the leading cause of death among people younger than 24 in the United States, according to the Centers for Disease Control and Prevention. The American Academy of Pediatrics released an updated policy statement in October 2022, stating firearms are now the leading cause of death in children under the age of 24 in the US.

The Academy’s statement urged a “multipronged approach with layers of protection focused on harm reduction, which has been successful in decreasing motor vehicle-related injuries, is essential to decrease firearm injuries and deaths in children and youth.”

The Academy has free educational modules for pediatricians to guide them on how to have what can be challenging or uncomfortable conversations about firearms with families, according to Dr. Lois Kaye Lee, a pediatrician and the chair of the Academy’s Council on Injury, Violence and Poison Prevention.

“This shouldn’t be considered as something extra; it should be considered as part of the work that we do every day around injury prevention, be it around firearms, child passenger safety and suicide prevention,” Lee said.

Dr. Georges Benjamin, executive director of the American Public Health Association, told CNN the public health approach to addressing gun violence removes the politics from the issue and “puts it into a scientific evidence-based framework.”

“Physicians have a unique opportunity to engage their patients, the parents of kids or the parents themselves as individuals to make their homes safer,” Benjamin said. “We already do this for toxins under our kitchen cabinets, razor blades and outlets in the wall.”

In the emergency department at St. Louis Children’s Hospital, all patients are screened for access to firearms and offered free gun locks, as well as safe storage education, Clukies said. Gun locks can also be mailed to families, free of cost, through the hospital’s website.

“Every patient that comes into our emergency department, whether it’s for a fever or a cold or a broken arm, is asked about access to firearms,” said Clukies, adding 5,000 locks have been given out since the initiatives were started in 2021.

In a collaborative effort between trauma nurses, physicians, social workers, violence intervention experts and family partners, the hospital created a “nonjudgmental” script for doctors to follow as they ask patients about access to firearms, Clukies said.

During the screening process, pediatricians will ask parents or caretakers questions such as: Do you have access to a firearm where your child lives or plays? How is it stored? Is it stored unloaded or loaded?

“When I first started doing this, I would say, ‘Are there any guns in the home? Yes, or no?’ But I have found and learned from other experts that if you just say, ‘If there are any guns in the home, do you mind telling me how they’re secured?’ it takes away the judgment,” said Andrews, a pediatrician whose hospital, the Medical University of South Carolina, also offers free gun locks to patients.

An assortment of cable gun locks offered free of charge by the Medical University of South Carolina.

Families are asked about firearms in the “social history” phase of a patient visit, during which pediatricians will ask who lives in the home, what grade the child is in, what activities they engage in and where the child goes to school, according to Andrews. When parents indicate their firearms are not safely stored, like on the top of a shelf or in a nightstand drawer, Andrews said those are important opportunities for intervention and education about storage devices such as keypad lockboxes, fingerprint biometric safes and other types of lock systems.

It’s also important for pediatricians to understand the parents’ or caretakers’ motivation for owning a firearm to “inform the conversation about where they’re willing to meet you as far as storage goes,” she added.

Andrews and Clukies said they were pleasantly surprised by the willingness of families to discuss firearm safety, most of whom recognize it is an effort to protect their children.

“I expected more pushback than we received, which is attributed to us really focusing on how we properly word these questions,” Clukies said. “I think it’s because we turn it into a neutral conversation, and we focus on safety and prevention.”

Andrews added it is uncommon for medical schools or residencies to discuss gun violence prevention, which she says is due to the “politics around the issue.”

“Thankfully, that has evolved, and more and more pediatricians are realizing that we have to be an integral part of the solution to this problem,” Andrews said.

At the St. Louis Children’s Hospital, pediatricians followed up with patients who received a free gun lock in a research study roughly two months after they launched the initiative in the fall of 2021 to see if their storage practices changed.

The study found two-thirds of families reported using the gun lock provided to them by the hospital and there was a “statistically significant decrease” in those who didn’t store their firearms safely, as well as an increase in those who stored their firearms unloaded, according to Clukies.

But there is still much more work to be done in the medical community to fight the gun violence epidemic and scientific research on the issue is “woefully underfunded,” Andrews contended.

According to the American Public Health Association’s Benjamin, a multidisciplinary approach by policymakers, law enforcement and the medical community is essential to fostering a safer environment for children.

“Injury prevention is a core part of every physician’s job,” Benjamin said. “It’s clearly in our lane.”

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Flu, Covid-19 and RSV are all trending down for the first time in months | CNN



CNN
 — 

A rough respiratory virus season in the US appears to be easing, as three major respiratory viruses that have battered the country for the past few months are finally all trending down at the same time.

A new dataset from the US Centers for Disease Control and Prevention shows that the number of emergency department visits for the three viruses combined – flu, Covid-19 and RSV – have dropped to the lowest they’ve been in three months. The decline is apparent across all age groups.

Measuring virus transmission levels can be challenging; health officials agree that Covid-19 cases are vastly undercounted, and surveillance systems used for flu and RSV capture a substantial, but incomplete picture.

But experts say that tracking emergency department visits can be a good indicator of how widespread – and severe – the respiratory virus season is.

“There’s the chief complaint. When you show up to the emergency room, you complain about something,” said Janet Hamilton, executive director at Council of State and Territorial Epidemiologists. “Being able to look at the proportion of individuals that seek care at an emergency department for these respiratory illness concerns is a really good measure of the respiratory disease season.”

In the week following Thanksgiving, emergency department visits for respiratory viruses topped 235,000 – matching rates from last January, according to the CDC data.

While the surge in emergency department visits early in the year was due almost entirely to Omicron, the most recent spike was much more varied. In the week ending December 3, about two-thirds of visits were for flu, about a quarter were for Covid-19 and about 10% were for RSV.

Grouping the impact of all respiratory viruses together in this way offers an important perspective.

“There’s a strong interest in thinking about respiratory diseases in a more holistic way,” Hamilton said. “Transmission is the same. And there are certain types of measures that are good protection against all respiratory diseases. So that could really help people understand that when we are in high circulation for respiratory diseases, there are steps that you can take – just in general.”

Now, Covid-19 again accounts for most emergency department visits but flu and RSV are still the reason behind about a third of visits – and they’re all trending down for the first time since the respiratory virus season started picking up in September.

More new data from the CDC shows that overall respiratory virus activity continues to decline across the country. Only four states, along with New York City and Washington, DC, had “high” levels of influenza-like illness. Nearly all states were in this category less than a month ago.

Whether that pattern will hold is still up in the air, as vaccination rates for flu and Covid-19 are lagging and respiratory viruses can be quite fickle. Also, while the level of respiratory virus activity is lower than it’s been, it’s still above baseline in most places and hospitals nationwide are still about 80% full.

RSV activity started to pick up in September, reaching a peak in mid-November when 5 out of every 100,000 people – and 13 times as many children younger than five – were hospitalized in a single week.

RSV particularly affects children, and sales for over-the-counter children’s pain- and fever-reducing medication were 65% higher in November than they were a year before, according to the Consumer Healthcare Products Association. While “the worst may be over,” demand is still elevated, CHPA spokesperson Logan Ramsey Tucker told CNN in an email – sales were up 30% year-over-year in December.

But this RSV season has been significantly more severe than recent years, according to CDC data. The weekly RSV hospitalization rate has dropped to about a fifth of what it was two months ago, but it is still higher than it’s been in previous seasons.

Flu activity ramped up earlier than typical, but seems to have already reached a peak. Flu hospitalizations – about 6,000 new admissions last week – have dropped to a quarter of what they were at their peak a month and a half ago, and CDC estimates for total illnesses, hospitalizations and deaths from flu so far this season have stayed within the bounds of what can be expected. It appears the US has avoided the post-holiday spike that some experts cautioned against, but the flu is notoriously unpredictable and it’s not uncommon to see a second bump later in season.

The Covid-19 spike has not been as pronounced as flu, but hospitalizations did surpass levels from the summer. However, the rise in hospitalizations that started in November has started to tick down in recent weeks and CDC data shows that the share of the population living in a county with a “high” Covid-19 community level has dropped from 22% to about 6% over the past two weeks.

Still, the XBB.1.5 variant – which has key mutations that experts believe may be helping it to be more infectious – continues to gain ground in the US, causing about half of all infections last week. Vaccination rates continue to lag, with just 15% of the eligible population getting their updated booster and nearly one in five people remain completely unvaccinated.

Ensemble forecasts published by the CDC are hazy, predicting a “stable or uncertain trend” in Covid-19 hospitalizations and deaths over the next month.

And three years after the first Covid-19 case was confirmed in the US, the virus has not settled into a predictable pattern, according to Dr. Maria Van Kerkhove, the World Health Organization’s technical lead for the Covid-19 response.

“We didn’t need to have this level of death and devastation, but we’re dealing with it, and we are doing our best to minimize the impact going forward,” Van Kerkhove told the Conversations on Healthcare podcast this week.

Van Kerkhove says she does believe 2023 could be the year in which Covid-19 would no longer be deemed a public health emergency in the US and across the world, but more work needs to be done in order to make that happen and transitioning to longer-term respiratory disease management of the outbreak will take more time.

“We’re just not utilizing [vaccines] most effectively around the world. I mean 30% of the world still has not received a single vaccine,” she said. “In every country in the world, including in the US, we’re missing key demographics.”

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Rest isn’t necessarily best for concussion recovery in children, study says | CNN



CNN
 — 

Sending kids back to school rather than isolating and resting may be a better way to help them recover faster from a concussion, a new study finds.

The study, published in JAMA Network Open on Friday, finds that an earlier return to school was associated with better outcomes for some children.

The study looked at data from 1,630 children ages 5 to 18 who went to nine different emergency rooms across Canada. The study found that for kids ages 8 to 18 who were recovering from a concussion, an early return to school, in two days or fewer, was associated with children experiencing fewer symptoms 14 days after their injury. That was not the case in children ages 5 to 7.

Patients who followed recommendations for a slower return to activity in the study, including being restricted from school and their electronics, took longer to recover and had more symptoms at 10 days post-injury on average than those that did not follow these steps.

Prolonged restrictions after a concussion is thought to increase a child’s risk of depression and anxiety, earlier studies have shown. The researchers believe that socialization, reduced stress from not missing too much school, and returning to a normal sleep and school schedule may play a role in helping kids recover faster. Light to moderate physical activity may also help a child recover faster.

Dr. Chris Vaughan, an author of study, said that about a decade ago doctors encouraged parents to have their kids rest and limit their brain activity to help them heal for a longer period of time.

“We didn’t have good data for that. But it seemed like the thing to do because we were helping kids avoid activities that were triggering symptoms, and so we’re trying to do our best to manage symptoms and that became the sort of standard for treatment,” said Vaughan, a neuropsychologist at Children’s National Hospital.

In the last five or six years, though, there has been a shift, Vaughan said, and the thinking is that after the first day or two of rest, some activity is good for recovery.

“We continue to need to take concussions very seriously,” Vaughan said.

In the past, “we were doing what a lot of people refer to as cocoon therapy, where you essentially put your child in a dark room and try and take away the stimulation and just have them rest. But what we learned is that shutting kids down to that extent actually slowed recovery from concussion,” said Dr. Susannah Briskin, a sports medicine doctor at UH Rainbow Babies & Children’s Hospital in Cleveland, who did not work on this study.

The pendulum has swung back to where doctors are trying to get kids to stay engaged as much as possible, and get them back to school sooner.

“I tell families the most important thing is to avoid any activities where the child could have their head struck again while they’re recovering, but it is important to get moving and not just sit around,” Briskin said.

The study, she says, supplements what some doctors are already doing, but “this was probably the earliest return that we’ve seen be helpful.” Often, Briskin said, kids are out of school about a week with a concussion.

“Based on this study that would actually be detrimental to their recovery,” Briskin said.

Most kids with a concussion will feel better within a couple of weeks, according to the US Centers for Disease Control and Prevention, but for some symptoms can last for a month or longer.

Just because they have some symptoms doesn’t mean they have to stay isolated, doctors said, but children may need accommodations. Children are often sensitive to light and noise after a concussion, thinking and concentrating can make kids feel worse, Briskin said.

“We really try to ease the burden by having kids take breaks from classes if they need to step out. We have individuals wear sunglasses if they’re having a lot of light sensitivity. If they’re having a lot of noise sensitivity, we try and avoid loud environments, such as music class, or even the lunch room or a loud assembly,” Briskin said.

In the study, the link between an early return to school and a lower number of problem symptoms was stronger in those who reported having a higher number of symptoms at first. Typical symptoms include feeling dizzy, having a headache and feeling nauseated.

Most guidance recommends people who get a concussion get a day or two of physical and mental rest and then gradually return to regular activities with some accommodations and support.

Dr. Britt Marcussen, a sports medicine physician who works with teams at the University of Iowa and who did not work on the study, said prior to this study, there’s little data to back up how to handle when students should go back to school post-concussion. Marcussen said this is one of the first papers to show that kids getting back to the classroom earlier seem to have fewer symptoms at 14 days out.

“Really this is the first paper that I’ve seen that says that early reintegration into school activities and cognitive activities may have some beneficial effect,” Marcussen said.

it is hard to know why it would be different for younger children, as the study suggested; Marcussen said it may be that the littlest kids are at a different developmental period, or just that younger children aren’t as clear about describing their symptoms. The American Academy of Pediatrics suggests doctors use a check list to ask kids about their symptoms and their severity.

“It may be just it’s harder for them to fill out the checklists and to identify how they’re feeling,” Marcussen said.

Every individual may be a little different, and not everyone who has a concussion should be back at school within two days, Vaughan said.

But generally, there are things people can do to help children, or anyone for that matter, recover from a concussion: First, people need to be protected from re-injury or activities that could do their head further harm. Vaughan said people should get good quality sleep at night, hydration and nutrition; they should even get a little bit of exercise, like going for a walk.

“Keeping a kid or student in their normal routine, as best we can, and trying to get them back into the normal routine as soon as their symptoms allow, seems to fit that model where healthy lifestyle factors really seem to support the brain’s efforts to recover and get better,” Vaughan said. “Finding the balance is really important.”

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Millions have the same ‘bendy body’ disease as my daughter. Why isn’t the medical profession paying more attention? | CNN



CNN
 — 

One day in July 2021, my then 15-year-old daughter Poppy stumbled and fell while walking down some stairs, grazing her knee. It wasn’t a serious wound, but over the weeks it didn’t heal.

Around the same time, her wrists and knees became sore; her ankles started rolling when she walked; her hands began shaking; her headaches and stomach aches became more frequent and intensely painful. She was always exhausted.

Before her health declined, Poppy had enjoyed horse riding and gymnastics, she’d competed in cross country races and been a fearless goalkeeper for the school hockey team.

But within a couple of months, as walking became increasingly difficult, she asked me for a walking stick. We found one that folds up and fits neatly in her school bag.

I took Poppy to doctors who conducted tests, but they couldn’t find out what was wrong with her. Then, in October, a breakthrough.

A podiatrist who was measuring Poppy for insoles to support her aching feet asked if Poppy could bend her thumb to reach her forearm. She could. Could she pull her little finger back to form a 90-degree angle with the back of her hand? She could do that, too.

“Have you heard of Ehlers-Danlos syndrome?” the podiatrist asked me. I hadn’t – so as soon as I got home, I went looking on the internet.

There are 13 types of Ehlers-Danlos syndrome (EDS), according to research and advocacy organization The Ehlers-Danlos Society. Most types are very rare, and can be diagnosed using genetic tests. However, the genes that cause hypermobile EDS (hEDS) – the most common form, accounting for about 90% of cases – are unknown, so diagnosis is based on a checklist of symptoms. The list includes a hypermobility rating, known as the Beighton Score.

Poppy had enough symptoms to qualify for hEDS, and the diagnosis was confirmed by a doctor one year ago, on Christmas Eve. He told us that although we can do our best to alleviate some symptoms, there is no cure.

Poppy reacted to the news better than I did. She had known for some time that something was fundamentally wrong. The diagnosis was upsetting but identifying her illness also gave her a sense of relief. I felt shocked and overwhelmed, and I cried for weeks.

Reading about EDS was like a dreadful slow reveal.

I learned that it’s a genetic disorder that causes the body to make faulty connective tissue, and connective tissue is everywhere – in the tendons, ligaments, skin, heart, digestive system, eyes and gums.

Weak connective tissue leads to hypermobility, which may sound like a good thing, but some people with bendy bodies suffer a mind-boggling array of symptoms, including joint dislocations and subluxations (like a mini dislocation, when the joint partially slips out of place), soft stretchy skin, abnormal scarring, poor wound healing, gastrointestinal disorders, chronic pain and fatigue.

The severity of symptoms varies wildly. Patients with milder cases can lead relatively normal lives, while others become housebound, and some can’t digest food and must be fed through tubes.

What’s more, people with hEDS are prone to other conditions, including POTS (postural orthostatic tachycardia syndrome, which makes you dizzy when you stand up) and MCAS (mast cell activation syndrome, which gives you allergy-type symptoms).

I learned a lot of new acronyms and they all spelled bad news.

I initially thought hEDS was rare, because all forms of EDS are commonly referred to as rare. But within a few weeks, I felt like I was seeing references to hEDS everywhere. Actor, writer and director Lena Dunham; actor and presenter Jameela Jamil; and drag queen Yvie Oddly live with it. I deep dived into EDS Twitter and EDS Instagram, while Poppy found it comforting to watch TikTok videos made by teenagers with the condition.

I discovered multiple patient groups on Facebook, each with tens of thousands of members, which turned out to be great sources of support. I asked questions (what kind of shoes are best for weak ankles? Which knee braces are easiest to pull on and off?) and kind strangers sent helpful advice. At the same time, scrolling through countless personal stories of pain, despair and shattered dreams made me feel terrified about what might lie ahead.

I noticed common themes. Many EDS patients had spent years seeking the correct diagnosis; others felt they’d been neglected and gaslit by doctors.

There was also a lot of talk of zebras.

Linda Bluestein, a Colorado-based physician who specializes in EDS and other hypermobility conditions, and has hEDS herself, explains why.

“I was told in medical school, ‘when you hear hoofbeats think horses, not zebras,’” she says. Many trainee doctors receive the same advice – when a patient presents with symptoms, “look for the common thing.” That’s why EDS patients commonly refer to themselves as zebras – and also use the fabulous collective noun “dazzle.” The name represents rarity and evokes the stripy stretch marks that are a common feature on EDS skin.

But if people with hEDS are medical zebras, why am I encountering so many of them?

Bluestein says that for many years it was thought that one in 5,000 people had Ehlers-Danlos syndrome. But she says the limited research that’s been carried out into the prevalence of hEDS suggests the true number of cases is “much, much higher” than that.

Dr. Linda Bluestein has treated hEDS patients  who have been searching for a diagnosis for decades.

Bluestein points me to a 2019 study carried out in Wales – a country of 3.1 million people. An examination of primary care and hospital records from 1990 to 2017 found that one in 500 people there has either hEDS or joint hypermobility syndrome (a similar condition with a slightly different set of symptoms). She says it’s “a good study” but believes it’s still an underestimate. The Ehlers-Danlos Society says more population studies need to be done to give a more accurate view of its incidence elsewhere.

But despite this possible prevalence, and how debilitating hypermobility disorders can be, the average time to diagnosis from the onset of symptoms is 10 to 12 years, according to The Ehlers-Danlos Society.

Bluestein has firsthand experience of this. Growing up, she wanted to become a ballet dancer and trained six days a week. When puberty hit, she started experiencing joint pain and migraines, and at 16 had her first orthopedic surgery. She realized she wouldn’t succeed in the ballet world and instead pursued her “back-up plan,” to become a doctor. But despite her career choice, Bluestein only received her hEDS diagnosis when she was 47 – more than 30 years later.

“I told my doctor on numerous occasions, ‘there is something wrong with me, I don’t heal well, I get injured more easily than other people’,” she says. “And he just never, never listened.”

Why, for so many patients, does it take so long to get diagnosed?

In 2014 a leading EDS expert, Professor Rodney Grahame, remarked at a conference that “no other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”

Far more women than men are diagnosed with EDS, which could help to explain the neglect, because the medical profession has a long history of overlooking health complaints made by women.

A 2009 study, conducted by the European Organisation for Rare Diseases, surveyed 414 families of EDS patients from five countries and found that the average delay to an EDS diagnosis was four years for men – but 16 years for women.

The report states that women with EDS tend to be “diagnosed later because their pain and hypotonia (poor muscle tone) aren’t considered as physical symptoms but rather as psychological symptoms or common complaints.”

“We tend to get dismissed a lot more easily,” says Bluestein. “People jump to the conclusion that we’re histrionic females.”

Anxiety is very common in patients with hypermobility issues, says Bluestein, which can cloud the picture. “When people with anxiety present to a physician, it can suck all the air out of the room, so that the physician almost can’t see anything else.”

This can ramp up the patient’s anxiety further “because people aren’t validating our symptoms, and then we start to doubt ourselves,” she says.

What’s more, medicine is divided into silos which creates the “worst possible model” for EDS patients, says Bluestein.

VIDEO THUMBNAIL Ehlers-Danlos Syndrome 1

‘We’re born with this and will never be free:’ Hear stories from people with Ehlers-Danlos syndrome

She explains that undiagnosed patients might consult a neurologist for their migraines, a rheumatologist for joint pain, a cardiologist for palpitations, a gastroenterologist for digestive issues and a urologist for bladder symptoms. Each doctor focuses on the symptoms that fall within their specialty but doesn’t consider the other ailments. “Nowhere along the way does somebody realize that there are certain conditions that could tie all of these things together and explain everything,” says Bluestein.

The 2009 rare diseases study found that during the quest for a diagnosis, 58% of EDS patients consulted more than five doctors, and 20% consulted more than 20.

The consequences of not getting diagnosed for years can be devastating.

Melissa Dickinson, a psychotherapist in Atlanta, Georgia, says she experienced symptoms of a “mystery illness” since childhood. Then in 2013, she “went on honeymoon to Mexico, relatively healthy, and came back disabled and with a dislocated neck.”

While on vacation, Dickinson says she got food poisoning and was prescribed ciprofloxacin, an antibiotic that can pose a serious risk of aortic aneurysm to people with EDS. Instead, she says it triggered significant nerve damage, digestive issues that almost made her go blind because her body wasn’t absorbing nutrients, and put her in a wheelchair.

Dickinson, who finally received her hEDS diagnosis in 2014, says taking the wrong medication “wrecked me from head to toe.” Now that she’s receiving treatment, “I can walk with mobility aids, but most of my body has to have constant support to function.”

Lara Bloom, president and CEO of The Ehlers-Danlos Society, who herself has hEDS, says many patients have “medicalized PTSD.”

“They have had to stop their careers, they’ve had to drop out of school, their relationships have broken down.” The delay inevitably results in worsening symptoms and a declining quality of life, she says. In worst-case scenarios, patients “are dying by suicide, they’re self-harming.”

Sometimes, the failure to diagnose EDS has led to children being taken away from their parents.

In 2010, Americans Rana Tyson and her husband Chad were falsely accused of harming their 4-week-old twin daughters, who had unexplained fractures in their legs.

Along with their older sister, the baby girls were taken by state authorities in Texas and sent to live with relatives. “It was the worst day of my life,” Tyson tells me in a phone call.

Five months later, a geneticist identified the twins as having a connective tissue disorder, and they were subsequently diagnosed with EDS and a vitamin D deficiency. The family was reunited but “12 years later, it still hurts,” says Tyson.

Bloom says some other parents of children with EDS have been wrongly accused of “fabricated or induced illness (FII)” – a rare form of abuse, formerly known as Munchausen’s syndrome by proxy, in which a parent or care giver deliberately causes symptoms or tries to convince doctors that a healthy child is ill.

Ellie Pattison, who has hEDS, has been repeatedly misdiagnosed as having an eating disorder.

Ellie Pattison, a 19-year-old student who lives in County Durham, England, suffers from severe digestive issues linked to hEDS.

Throughout her childhood, Ellie was repeatedly misdiagnosed as having an eating disorder, she says, while her mother Caroline was accused of FII on three separate occasions. Caroline successfully fought to keep her daughter at home, says Ellie, but the ordeal has left the whole family with “an unimaginable amount of trauma.” Ellie says she suffered from PTSD and endured years of horrific nightmares, triggered by living with the fear from a young age that she could be forcibly separated from her family.

This underlines why prompt diagnosis is so important, says Bloom. “Our hope and dream is for people to get diagnosed when their symptoms begin.”

In the case of hEDS, a crucial first step is to find out what causes it.

Cortney Gensemer, a biomedical scientist in the Norris Lab at the Medical University of South Carolina’s department of Regenerative Medicine and Cell Biology, is trying to solve this mystery. She and research mentor Russell Norris, head of the lab, have been studying a gene mutation they believe causes hEDS (the results of the study are currently under peer review).

Like Poppy, Gensemer was diagnosed with hEDS as a teenager. She says the disease affects every aspect of her work. Looking down a microscope is particularly painful at times – her neck is unstable because of her hEDS, and she’s had metal screws put into some of her neck vertebrae to fuse them.

Cortney Gensemer working in the Norris Lab and recovering from neck surgery earlier this year.

Norris kitted the lab out with special equipment, including motion sensor doors (standard lab doors are very heavy), adjustable chairs and ergonomic pipettes that are gentle on the hands. “If I didn’t have all that stuff, I don’t think I’d be able to do it,” says Gensemer.

To find a hEDS-causing gene, Gensemer says she and Norris sampled DNA from a large family with cases spanning four generations and looked for a mutation that appears only in relatives who have the disease. They identified a “strong candidate gene” and inserted it into mice using gene editing tools.

Gensemer and Norris found that the hEDS mice had significantly more lax tissues, and floppier tails than regular rodents. “You can tie a loose knot into the mutant mouse tail. With a normal mouse tail, you can (only) bend it into a circle,” Gensemer says.

The gene that Gensemer and Norris found won’t account for all hEDS cases, she says. They believe that eventually multiple genes will be identified, and hEDS may be split into different subtypes. This would help to explain why different patients have different symptoms. Crucially, if genetic information sheds light on how the connective tissue is “messed up,” it could lead to effective treatments, says Gensemer.

The Ehlers-Danlos Society is also looking for genes as well as blood markers, working with a team of experts to sequence and analyze the DNA of 1,000 hEDS patients from around the world. And at the UK’s University of Warwick, Ph.D. candidate Sabeeha Malek, another scientist with hEDS, has proposed that EDS might be caused by a fault in the way that collagen binds to cell membranes in connective tissue. If she’s right, she hopes her work will lead to a skin biopsy test that could identify all forms of the disease.

Sabeeha Malek is working to identify biomarkers that could make EDS diagnosis easier.

Progress is being made but on a very small scale. “If you look at any major academic institution, there are multiple labs studying cancer, multiple labs studying heart disease. When you look at a disease that affects one in 500 people, and probably more than that, there should be a lab studying it at every single academic institution,” says Gensemer.

Gensemer hopes that as more discoveries are made and data is accumulated it will “change the way the medical community looks at the disease” – and that it will be taken more seriously.

A year has passed since Poppy’s diagnosis. The initial shock has subsided, and while I’m still grieving the loss of her health, we’ve both learned to accept our new reality and have adjusted to living with EDS.

I’ve assembled a team of supportive doctors and therapists and acquired an arsenal of paraphernalia to fight pain and manage symptoms, including braces and kinesiology tape to hold her joints in place; ice packs, heat pads, tiger balm and arnica gel for sore muscles; and a cupboard full of medications and supplements.

With Poppy often stuck at home, I also got her a giant kitten that she calls Bagel, and he provides the best therapy.

Poppy with Bagel.

Writing this article has taught me a lot more about EDS: It’s been upsetting to report on the terrible experiences some have suffered, but I’ve been awestruck by the dedication of people, many with the condition themselves, who are working to find solutions.

I don’t know what the future holds for Poppy. Some patients’ symptoms improve with age; others experience an increase in pain and a loss of mobility. I’ve learned there’s a limit to what we can control but there’s a lot we can do, to tackle symptoms and make life easier. And I believe that change is coming.

With a better understanding of the condition and diagnostic tools on the horizon, my biggest hope is that there will be a cure one day – and that it will come in time for Poppy.

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New 988 mental health crisis line sees ‘eye-opening’ rise in calls, texts, chats in first 6 months, data shows | CNN



CNN
 — 

Since the summer launch of the 988 Suicide and Crisis Lifeline, the new three-digit number has seen a significant rise in call volume – routing more than 2 million calls, texts and chat messages to call centers, with the majority being answered in under a minute.

“The average speed to answer year-over-year was about three minutes in 2021. It’s now 44 seconds in December of 2022,” said Dr. John Palmieri, a senior medical advisor at the US Department of Health and Human Services’ Substance Abuse and Mental Health Services Administration, who serves as 988’s deputy director.

The 988 Suicide and Crisis Lifeline, formerly known as the National Suicide Prevention Lifeline, launched last July, transitioning the former 1-800-273-TALK phone number to the three digits of 988. The new number is intended to be easy to remember, similar to how people can dial 911 for medical emergencies.

Since that transition, in the past six months, about 2.1 million calls, texts and chats to the new 988 number have been routed to a response center and, of those, around 89% were answered by a counselor, according to a CNN analysis of data from SAMHSA, which oversees 988. Many of the calls that went unanswered were due to callers hanging up before reaching a counselor.

“We know that there are many individuals in this country who are struggling with suicidal concerns, with mental health or substance use concerns, who aren’t able to access the care that they need. And in many respects, historically, because of funding limitations or other limitations, the system has let them down,” Palmieri said. “So, this is truly an opportunity with 988 – as a catalytic moment – to be able to transform the crisis care system to better meet those needs in a less restrictive, more person-centered, more treatment- and recovery-oriented way.”

Since the summer launch of 988, more than 300,000 calls, texts and chats have come in each month. SAMHSA data on the new lifeline show that in December 2022 versus December 2021, calls answered increased by 48%, chats answered increased by 263% and texts answered increased by 1,445%.

“We see the uptick in volume as an indicator that more people are aware of the service and able to access it,” Kimberly Williams, CEO and president of Vibrant Emotional Health, the nonprofit administrator and operator of the 988 lifeline, said in an email Thursday.

She added that Vibrant was “not surprised” by the increase in volume and has been “working strategically” with the more than 200 call centers in the 988 network to respond.

“In December of 2022 compared to December of 2021, over 172,000 more contacts were answered as part of the lifeline system,” Palmieri said.

The average amount of time counselors spent talking, chatting or texting with contacts was about 21 minutes and 55 seconds.

“It’s really eye-opening to see the increase in the texts, chats and calls that are coming in. But to see that more states have a more than 90% answer rate for contacts coming from their state – and that average speed of answering is down, so people are getting help more quickly,” said Hannah Wesolowski, the chief advocacy officer for the National Alliance on Mental Illness.

She added that before the launch of 988, there were likely many people seeking mental health support but didn’t feel like there was a call service available for them.

“With the National Suicide Prevention Lifeline, even though they did answer a range of crises, it was billed as the ‘National Suicide Prevention Lifeline.’ So a lot of people who are not feeling suicidal but were in distress didn’t feel like that was a resource for them,” Wesolowski said.

“I think awareness of 988 continues to grow each month,” she said. “This country is in a mental health crisis at large. I believe that many more people are feeling that they’re approaching a crisis situation or are in crisis.”

The 988 lifeline also has been testing a pilot program specifically for the LGBTQ+ community, in partnership with the Trevor Project, in which calls, texts or chats from LGBTQ+ youth have the option of being connected with counselors specially trained in LGBTQ-inclusive crisis care services.

The pilot program began around the end of September, and “there has been a lot of demand and a lot of utilization of that service,” Palmieri said. He added that LGBTQ+ youth are at a higher risk of suicide.

“With that pilot program, it is so important that particularly a young person who’s feeling alone, who’s feeling isolated, is able to connect to somebody that they feel can share their experience and that comes from a similar place of understanding,” Wesolowski said. “I’m very anxious to see what the data shows when the pilot ends in March, but I feel very encouraged by my conversations with the Trevor Project and others involved in this.”

Since its launch, the 988 lifeline also has increased the number of call centers taking Spanish calls from a total of three to seven. Spanish language options will increase for text and chat messaging as well, Palmieri said.

“We are also implementing video phone capabilities for people who are deaf and hard of hearing,” he said.”In addition to that, in Washington state, there’s a pilot currently providing specialized care access for individuals who are American Indian/Alaskan Natives to be able to be connected to an organization that’s focused more specifically on their needs.”

HHS announced in December that through SAMHSA, more than $130 million has been awarded in grants to support the 988 Suicide and Crisis Lifeline. The funding comes from the Bipartisan Safer Communities Act. The federal spending omnibus bill includes about $500 million for the 988 Suicide & Crisis Lifeline, according to SAMHSA.

In total, the Biden administration has invested nearly $1 billion in the 988 lifeline.

“Our country is facing unprecedented mental health and substance use crises among people of all ages and backgrounds,” HHS Secretary Xavier Becerra said in the announcement last month.

“Although rates of depression and anxiety were rising before the pandemic, the grief, trauma, and physical and social isolation that many people experienced during the pandemic exacerbated these issues. Drug overdose deaths have also reached a historic high, devastating individuals, families, and communities,” he said. “The significant additional funding provided by the Bipartisan Safer Communities Act will have a direct positive impact on strengthening the behavioral health of individuals and communities across the country.”

The 988 lifeline is just one tool in the ongoing effort to improve our nation’s mental health, which Lori Tremmel Freeman, chief executive officer of the National Association of County and City Health Officials, calls “a key concern of public health” right now.

“It is also one of the root causes of substance abuse and misuse, which is fueling the national epidemic that we have. We’re also concerned about, of course, rates of suicide and what we can do to alleviate and lower those rates,” Freeman said.

“This is very much also a primary public health crisis of concern and leads to many other public health issues that need to be addressed: homelessness, food insecurity, substance misuse, and poor health outcomes,” she said. “We need to get people healthy and well, and connected to the right resources and professionals that can help them overcome their mental health crises.”

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Decreasing rates of childhood immunization are a major concern. Our medical analyst explains why | CNN



CNN
 — 

Vaccine rates for measles, polio, diphtheria and other diseases are decreasing among US children, according to a new study from the US Centers for Disease Control and Prevention.

The rate of immunizations for required vaccines among kindergarten students declined from 95% to approximately 94% during the 2020-21 school year. It dropped further — to 93% — in the 2021-22 school year.

That’s still a high number, so why is this drop in immunization significant? What accounts for the decline? What might be the consequences if these numbers drop further? If parents are unsure about vaccinating their kids, what should they do? And what can be done on a policy level to increase immunization numbers?

To help us with these questions, I spoke with CNN Medical Analyst Dr. Leana Wen, an emergency physician, public health expert and professor of health policy and management at the George Washington University Milken Institute School of Public Health. She is also author of “Lifelines: A Doctor’s Journey in the Fight for Public Health.”

CNN: Why is it a problem that childhood immunization rates are declining?

Dr. Leana Wen: The reduction of vaccine-preventable diseases is one of the greatest public health success stories in the last 100 years.

The polio vaccine was introduced in the United States in 1955, for example. In the four years prior, there were an average of over 16,000 cases of paralytic polio and nearly 2,000 deaths from polio each year across the US. Widespread use of the polio vaccine had led to the eradication of polio in the country by 1979, according to the CDC, sparing thousands of deaths and lifelong disability among children each year.

The measles vaccine was licensed in the US in 1963. In the four years before that, there were an average of over 500,000 cases and over 430 measles-associated deaths each year. By 1998, there were just 89 cases recorded — and no measles-associated deaths.

These vaccines are very safe and extremely effective. The polio vaccine, for example, is over 99% effective at preventing paralytic polio. The measles vaccine is 97% effective at preventing infection.

We can do this same analysis for other diseases for which there are routine childhood immunizations.

It’s very concerning that rates of immunization are declining for vaccines that have long been used to prevent disease and reduce death. That means more children are at risk for severe illness — illness that could be averted if they were immunized. Moreover, if the proportion of unvaccinated individuals increases in a community, this also puts others at risk. That includes babies too young to be vaccinated or people for whom the vaccines don’t protect as well — for example, patients on chemotherapy for cancer.

CNN: What accounts for the decline in vaccination numbers?

Wen: There are probably many factors. First, there has been substantial disruption to the US health care system during the Covid-19 pandemic. Many children missed routine visits to the pediatrician during which they would have received vaccines due to pandemic restrictions. In addition, some community health services offered also became disrupted as local health departments focused on Covid-19 services.

Second, disruption to schooling has also played a role. Vaccination requirements are often checked prior to the start of the school year. When schools stopped in-person instruction, that led to some families falling behind on their immunizations.

Third, misinformation and disinformation around Covid-19 vaccines may have seeded doubt in other vaccines. Vaccine hesitancy and misinformation were already major public health concerns before the coronavirus emerged, but the pandemic has exacerbated the issues.

According to a December survey published by the Kaiser Family Foundation, more than one in three American parents said vaccinating children against measles, mumps, and rubella shouldn’t be a requirement for them to attend public schools, even if that may create health risks for others. This was a substantial increase from 2019, when a similar poll from the Pew Research Center found only 23% of parents opposed school vaccine requirements.

CNN: What are some consequences if immunization rates drop further?

Wen: If immunization rates drop further, we could see more widespread outbreaks. Diseases that were virtually eliminated in the US could reemerge, and more people can become severely ill and suffer lasting consequences or even die.

We are already seeing some consequences: Last summer, there was a confirmed case of paralytic polio in an unvaccinated adult in New York. It’s devastating that a disease like polio has been identified again in the US, since we have an extremely effective vaccine to prevent it.

There is an active measles outbreak in Ohio. As of January 17, 85 cases have been reported. Most of the cases involved unvaccinated children, and at least 34 have been hospitalized.

CNN: If parents are unsure of vaccinating their kids, what should they do?

Wen: As parents, we generally trust pediatricians with our children’s health. We consult pediatricians if our kids are diagnosed with asthma and diabetes, or if they have new worrisome symptoms of another illness. We should also consult our pediatricians about childhood immunizations; parents and caregivers with specific questions or concerns should address them.

The national association of pediatricians, the American Academy of Pediatrics, “strongly recommends on-time routine immunization of all children and adolescents according to the Recommended Immunization Schedules for Children and Adolescents.”

CNN: What can be done to increase immunization numbers?

Wen: There needs to be a concerted educational campaign to address why vaccination against measles, mumps, rubella, chickenpox, polio and so forth is so crucial. One of the reasons for vaccine hesitancy, in my experience, is that these diseases have been rarely seen in recent years. Many people who are parents now didn’t experience the devastation of these diseases growing up, so may not realize how terrible it would be for them to return.

Specific interventions should be targeted at the community level. In some places, low immunization levels may be due to access. Vaccination drives at schools, parks, shopping centers, and other places where families gather can help increase numbers. In other places, the low uptake may be because of vaccine hesitancy and misinformation. There will need to be different strategies implemented in that situation.

Overall, increasing immunization rates for vaccine-preventable childhood diseases needs to be a national imperative. I can’t underscore how tragic it would be for kids to suffer the harms of diseases that could be entirely prevented with safe, effective and readily available vaccines that have been routinely given for decades.

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ER on the field: An inside look at how NFL medical teams prepare for a game day emergency | CNN



CNN
 — 

When Buffalo Bills safety Damar Hamlin dropped to the ground from a cardiac arrest earlier this month, help was by his side in under 10 seconds to administer CPR.

It wasn’t coincidence or luck. Rather, it’s the result of careful planning and practice – the execution of detailed choreography performed by the medical personnel present at every National Football League game.

Saving Hamlin’s life was the ultimate test.

“What we want is that the players are getting the same care here that they would if they were in a hospital or health care facility and that’s what the system has been set up to do,” NFL Chief Medical Officer Dr. Allen Sills told CNN Chief Medical Correspondent Dr. Sanjay Gupta on Saturday.

About 30 medical personnel are at every game, including orthopedic and trauma specialists, athletic trainers, paramedics and dentists. Sills gave CNN a rare behind-the-scenes look at the league’s medical personnel during Saturday’s playoff game between the Jacksonville Jaguars and the Los Angeles Chargers. The goal, Sills said, is to deliver hospital-quality care on the gridiron.

When Hamlin collapsed on January 2, speed was of the essence. Studies find that for every minute someone who experiences cardiac arrest and doesn’t receive CPR, their chances of survival decrease 7 to 10%.

Hamlin’s heart was restarted on the field. The 24-year-old spent more than a week in the hospital in Cincinnati, then transferred to a hospital in Buffalo before he was released home last week.

Sills said that being on the field was likely a factor for Hamlin: Survival is more likely for someone who experiences cardiac arrest in the hospital. One study found that 10 to 12% those who have cardiac arrest outside of the hospital survive to discharge, but that survival rate more than doubled for those who experienced cardiac arrest in the hospital.

“I think he was being resuscitated as he would have been in an emergency room at that moment,” Sills said.

Hear audio of medical personnel treating Damar Hamlin after he collapsed

The NFL requires all teams to have an emergency action plan, or EAP, for all player facilities, including practice fields.

The plans are filed by the teams every year and are approved by the League as well as the NFL Players Association, the players’ union, Sills said. They run drills on the plan, so when an event like Hamlin’s cardiac arrest occurs, the medical team’s choreography is close to automatic.

“The EAP was followed to a letter that night,” Sills said. “In that moment everyone knew what they needed to do, how they needed to do it and had the equipment to do it and felt comfortable.”

These plans include details about where ambulances are located, the quickest route to the hospital, where medical equipment is stored, and even what radio and hand signals will be used in case of a medical event.

While the teams are all connected by radio, the sound from the game and the crowd can be overwhelming.

“It gets loud and so having those nonverbal signs is a way for us to communicate,” explained Dr. Kevin Kaplan, Jacksonville Jaguars’ head physician. For example, using two hands as if driving a steering wheel indicates needing the medical cart, while crossing arms to make an “X” is an all-call for medical personnel.

The home team sends the plan to the visiting team a week before the game. Then, an hour before kickoff, medical teams from both teams gather to review and confirm the details in what’s known as a “60-minute meeting.”

Medical teams from the Los Angeles Chargers and Jacksonville Jaguars gathered for the 60-minute meeting ahead of kickoff on Saturday.

It’s like the NFL’s version of what happens in a hospital: Before doctors perform a procedure, the medical team gathers for a “timeout” to review who is responsible for what.

Before the football game, they identify the team physicians, athletic trainers and key trauma personnel, including an airway specialist who can place a breathing tube in moments, if needed.

In the excitement of game day, there needs to be a simple, clear way to identify who can help in case of an emergency. At any NFL game, you’ll see it: a red hat.

Dr. Justin Deaton, NFL airway management physician, wears a red hat on the sideline of the Jacksonville Jaguars-Los Angeles Chargers game on Saturday.

“That signifies me as the emergency physician, the airway physician, so that even the other team knows when I come out what my role is,” Dr. Justin Deaton told Gupta. “Once I come out onto the field, I kind of take over, I identify if the patient is either unconscious or has an airway obstruction.”

At every game, Deaton stands along the 30 yard line, just like his counterparts at other games.

“We standardize the location so that everybody knows where our airway physician is going to be located,” said Sills.

If the player isn’t breathing, it’s up to Deaton to identify who will administer CPR. If the player’s breathing is blocked and he can’t breathe on his own, Deaton may have to intubate the player on the field. In order to do so, he carries a videoscope to look down someone’s throat and an ultrasound machine.

In the event Deaton can’t get the patient to breathe through their mouth, he’s prepared to essentially do surgery on the field.

“If someone has an obstruction or significant trauma to the face and we can’t secure an airway by the mouth, we’re able to make an incision and insert that way,” he told Gupta. “I really have all the resources available here that I would have in an emergency room.”

The challenge is that they’re surrounded by chaos – not the more controlled environment of the emergency department or operation room.

“When you have a larger-than-average-sized person that’s laying flat on the ground and not able to be elevated to a certain level with extra equipment, plus cameras and other people around, those are really the confounders and things that make it more difficult to manage,” Deaton said.

In football, it’s not just about executing in the moment – it’s about anticipating. The same is true for medical personnel.

The NFL includes certified athletic trainers on its medical team to serve as spotters. They’re positioned throughout the stadium, including a booth that oversees the entire stadium, to watch the game in real time and again in replay – sometimes over and over – to immediately catch any injuries or assess those that might have been overlooked. They have around 30 different angles of the field at their fingertips.

“We watch every play probably minimally four times and then we’ll go back and watch it again,” said Sue Stanley-Green, one of the athletic trainer spotters assigned to Saturday’s game. “We just want to make sure we don’t miss anything.”

Spotters around the field at every game have different views of plays -- and potential injuries.

The spotters who sit in a stadium booth above the field are able to communicate directly with the medical team on the sidelines and direct them to concerning plays and possible injuries. They also have a unique line of communication to the referees, and the ability to stop the game for a medical timeout.

Sills acknowledges that there is always room for improvement and need to evolve.

In September, Miami Dolphins quarterback Tua Tagovailoa experienced an apparent head injury while playing against the Bills. He stumbled after being hit, but was allowed to return to the game. The incident put new scrutiny of the NFL and its policies.

Afterward, the league changed its concussion policy. Now, Sills says, “if we see something that looks like ataxia on video, (players) are done.”

Sills said he believes the NFL’s network of practices is working to keep players safe, and the league is currently reviewing the moments around Hamlin’s cardiac arrest. One aspect of emergencies that Sills wants to see more work on is privacy.

In the moments after Hamlin fell, his teammates formed “kind of a shield,” Sills said, which limited the view of Hamlin.

“I think there’s some things there that we may look at,” Sill said. “Obviously any of us would want some privacy in a moment like that.”

But when facing a test like saving a life on the field, “everything went really as well as you could have asked to have gone in the moment,” Sills said. “It’s always about the right people, the right plan and the right equipment.”

Bob Costas Damar Hamlin split for video

Bob Costas: Hamlin collapsing is not an indictment of NFL safety

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Study shows convalescent plasma works for immune-compromised Covid-19 patients, but it can be hard to find | CNN



CNN
 — 

Convalescent plasma – a once-celebrated treatment for Covid-19 that has largely fallen out of favor – does work well for people who are immune-compromised, according to a study published Thursday.

The report in the journal JAMA Network Open analyzed the results of nine studies and found that immune-compromised Covid-19 patients were 37% less likely to die if they got convalescent plasma, an antibody-rich blood product from people who’d recovered from the virus.

Although it’s legal to use convalescent plasma to treat Covid patients who are immune-compromised, as inpatients or outpatients, government guidelines are neutral about whether the treatment works, so some hospitals offer it but others do not.

“Our concern is that many patients who need [convalescent plasma] are not getting it,” said Dr. Arturo Casadevall, an infectious disease expert at Johns Hopkins University and a co-author of the new study. “This is really important because these people can be treated, and they could have better outcomes with this material if we can just get the word out.”

He said it’s to everyone’s advantage to treat immune-compromised patients quickly.

Immune-compromised people sometimes have “smoldering Covid” for months because they lack the antibodies to fight it off, which gives the virus plenty of opportunities to mutate in the person’s body.

“These immune-compromised patients are essentially variant factories,” said Dr. Michael Joyner, an anesthesiologist at the Mayo Clinic and another study co-author. “And you do not want a bunch of people running around out there making weird variants.”

There are about 7 million immune-compromised people in the US, and treating them if they contract Covid-19 has proved challenging.

Many of them can’t take the antiviral drug Paxlovid because it interferes with other medicines they take.

Monoclonal antibodies, once popular for prevention and treatment for this group, aren’t used anymore because coronavirus variants have changed over time. One of the advantages of convalescent plasma is that as long as it’s been donated recently, there’s a high likelihood it will have antibodies to currently circulating variants, according to advocates for the treatment.

But the National Institutes of Health’s Covid-19 treatment guidelines say there’s not enough evidence to recommend either for or against the use of convalescent plasma in people with compromised immune systems.

Three times last year – in May, August and December – Casadevall, Joyner and dozens of other doctors from Harvard, Stanford, Mayo, Columbia and other academic medical centers wrote emails to scientists at the National Institutes of Health, sending them research materials and urging them to revise the guidelines. They say they have not received a response.

Joyner said he’s “frustrated” with the NIH’s “bureaucratic rope-a-dope,” calling the agency’s guidelines a “wet blanket” that discourages doctors from trying convalescent plasma on these people.

Some patient advocates say they’re angry.

“This lack of response to the researchers is infuriating,” said Janet Handal, co-founder of the Transplant Recipient and Immunocompromised Patient Advocacy Group.

Several large randomized clinical trials on the general population, including one in India and one in the UK, have found that convalescent plasma did not reduce Covid-19 deaths or prevent severe illness, and the treatment is no longer authorized in the US for people who have healthy immune systems.

The nine studies analyzed in the new report are much smaller and looked only at immune-compromised patients.

Dr. Peter Horby, a professor at the University of Oxford and the co-principal investigator of the large UK study, said that a large randomized clinical trial should be done on immune-compromised patients before clinical practice guidelines for this group are changed.

He said that support for convalescent plasma to treat Covid-19 has been based on “an emotional feeling that something had to be done.”

“We’ve seen time and again that people’s beliefs and emotions about what works can be wildly wrong, and so the best thing to do is to evaluate these things properly in trials,” he said.

At the beginning of the pandemic, there was great enthusiasm for convalescent plasma as Covid-19 survivors sought to save lives, donating antibodies against the virus to people who were sometimes at death’s door.

In August 2020, the US Food and Drug Administration granted emergency use authorization for the treatment, but some questioned whether it was politically motivated and whether the data really showed that it worked.

Then, the large clinical trials suggested convalescent plasma didn’t work.

“We didn’t see a benefit,” said Horby, director of Oxford’s Pandemic Sciences Institute.

But there was one exception.

Horby said his study did find “some evidence of some benefit” in Covid-19 patients who had not developed antibodies against the virus. This would most likely include immune-compromised patients because their faulty immune systems don’t always generate antibodies the way they should, even after infection.

When this group of patients received convalescent plasma, Horby said, they had a slightly shortened hospital stay and a slightly lower risk of ending up on a ventilator compared with similar patients who did not receive convalescent plasma.

Joyner and Casadevall, the Mayo and Hopkins doctors, point to that finding – and a similar one in a large trial in Australia, Canada, the UK and the US, as well as results of smaller studies – as an indication that convalescent plasma is worth trying in immune-compromised patients.

Immune-compromised patients who catch Covid-19 can get convalescent plasma relatively easily if they’re patients at Hopkins, Mayo or several other medical centers.

But many other people might have a difficult time accessing it.

It took Bernadette Kay of Manhattan Beach, California, months to get it, and she had to be “relentless” and call in the help of several “angels” in New York, Maryland, Minnesota and California to finally make it work.

Kay, 64, who has a compromised immune system because of a drug she takes for rheumatoid arthritis, got Covid-19 in July. She took two monoclonal antibodies, as well as remdesivir and Paxlovid – twice. But she still tested positive on and off for months and had fatigue, congestion and headaches.

“I felt like half a person,” she said. “I was not an able-bodied person. I was disabled because of lack of energy. It feels dark – a heavy feeling in your forehead and your face.”

Kay said she saw several doctors and none of them suggested convalescent plasma. That’s where her first angel came in: her daughter, who had signed her up for the Transplant Recipient and Immunocompromised Patient Advocacy Group.

That group, as well as the CLL Society, an advocacy organization for cancer patients, have been helping immune-compromised people when they get infected with Covid-19, connecting them with experts and offering guidance on how to arrange to have the plasma ordered.

Kay says Handal, the co-founder of the immune-compromised patients’ group, was her second angel, because she pointed her to angels No. 3 and 4: Joyner, the Mayo doctor, and Dr. Shmuel Shoham, an infectious disease expert at Hopkins.

Joyner and Shoham pointed Kay to her fifth angel: Chaim Lebovits, a businessman, leader in the New York’s Hasidic Jewish community and co-founder of the Covid Plasma Initiative.

Lebovits reached out to a hospital and blood bank near Kay that could procure the plasma once a doctor ordered it. Kay then reached out to six local doctors, most of them infectious disease experts, inquiring about convalescent plasma, but she didn’t make any progress.

“I think they thought it was quack medicine,” she said.

By this time, it was November, four months after she initially tested positive for Covid. She sought out a seventh doctor, sending him information from plasma experts, including a slide presentation by Joyner and Casdevall. She said that doctor, after conferring with someone at the blood bank that Libovits had suggested, agreed to order the plasma.

That’s where her sixth angel came in: Robert Simpson, vice president for hospital services at the San Diego Blood Bank, who arranged to have the blood flown in from Stanford University Medical Center.

“Robert watched the flight on Flight Tracker and had a courier waiting to bring it to the hospital,” Kay said, adding that she calls her angels collectively her “circle of love.”

Two to three weeks after her infusion, she began to feel better. She tested negative on January 4 and has continued to feel well and test negative since then.

“My energy level is back to normal. I don’t feel like half a person,” she said.

She said she’ll never know for sure exactly what spurred her recovery, but “I think it was plasma that made the difference, because in six months, nothing else made a difference.”

Kay, who works in health care, said most other people wouldn’t have known how to navigate the system like she did or might have given up in frustration.

“With the help of Janet [Handal] and her team of scientists, I’ve been able to get where I am today,” she said. “But it was not easy. This was driven by my bullheaded advocacy, because that’s who I am. I think I’m a total anomaly. No one has the persistence that I have.”

Joyner said that while he and his colleagues wait for a response from their emails to the NIH, they’ve formed the National Covid-19 Convalescent Plasma Project, and they have a phone meeting every Thursday night to discuss their progress.

“We’ve encountered many roadblocks,” said Dr. Liise-anne Pirofski, chief of the Division of Infectious Diseases at the Albert Einstein College of Medicine. “It’s just not viewed as part of the Covid-19 treatment armamentarium, and it should be.”

Pirofski, Joyner and Casadevall say they receive no financial benefit from convalescent plasma. They think one reason convalescent plasma isn’t more widely used is that there isn’t a pharmaceutical company spending money to advocate for it.

Handal, who runs the Facebook group for people who are immune-compromised, said that after she sent several emails to the NIH, agency scientists wrote back, inviting her and other leaders of her group to a meeting next week.

She plans to tell them that they need to review their Covid-19 plasma guidelines and fund more research on the coronavirus and the immune-compromised, as they have few treatment options and so often isolate at home with their families to avoid the virus.

“It is unconscionable that the NIH has let stand for months its guideline on Covid convalescent plasma, which says there is not enough information to make a recommendation, while we who are immune-compromised see our treatments dwindle,” she said. “The NIH needs to speak to the clinician researchers who are experts, prioritize the immune-compromised and fund the research needed to keep us safe.”

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