Rachael Zimlich is a freelance writer in Cleveland, Ohio. She writes regularly for Contemporary Pediatrics, Managed Healthcare Executive, and Medical Economics.

Rachael Zimlich, RN, BSN

On the surface, it seems the prevalence of food allergies—or at least parents’ awareness of them—is on the rise. The Centers for Disease Control and Prevention reports that from 1997 to 2011, food allergies in children increased by about 50% overall and now affect roughly 2 children in every classroom.

Cow’s milk allergy (CMA) is one of the most common food allergies reported in infants and young children, but estimating its true prevalence has proved difficult. Not all suspected cases are tested and diagnosed, but CMA prevalence is estimated at 2% for children under 4 years of age, with roughly 1.6 million children affected as of 2018.

Despite difficulties in establishing prevalence in children, experts warn that, based on facility-based observations, CMA cases are presumably rising. This makes it all the more important for pediatricians to know how to recognize and treat these allergies.

There are several accepted methods for assessing and diagnosing CMA but no clear standard, and related data are not collected frequently on a national basis. The National Health and Nutrition Examination Survey didn’t uncover significant increases in dairy allergies between the 1990s and mid-2000s, but these figures are estimated only once per decade, and many health facilities continue to report higher numbers of food allergies, including dairy.

Together, these issues present a challenge to establishing overall prevalence and a benchmark for surveillance. Testing methods have improved over the years, too, raising the question of whether more accurate results and a better understanding of gut health may be skewing the perception of a rise in allergy prevalence.

“The American diet has been changing [with more processed foods and less fruits and vegetables], which is affecting the microbiome of the gut,” said Sarah Lowry, MD, a pediatric gastroenterology fellow at Johns Hopkins Medicine in Baltimore, Maryland. “This may be contributing to immunogenicity and allergies, but more studies are needed for this to be identified as a true cause. I think there is a higher prevalence overall—again, based on changes in the gut microbiome, diet, and exposure—but there are also better testing methods.”

Diagnosis begins with a parental history report and recognition, which Lowry said have improved as a process overall. Parent groups on social media have also raised awareness and opened the door to more questions about these allergies, Lowry said.

CMA is the second most common food allergy in children, behind peanut, Lowry said. It presents earlier—around age 2 years—than other food allergies but usually produces a less severe reaction. Considering the limitations of reporting, overall prevalence of dairy allergies in children is estimated at 5%, representing about 20% of all food allergies in children, Lowry said.

Different symptoms and prevalence rates characterize the various types of CMA, said Vivian Hernandez-Trujillo, MD, FAAP, FAAAAI, FACAAI, a pediatric allergist and division director of the allergy and immunology program at Nicklaus Children’s Hospital in Miami, Florida. She offered the following summary:

 This type can affect the skin as urticaria, angioedema, or eczema, as well as cause respiratory symptoms (eg, cough, nasal congestion, rhinorrhea) and gastrointestinal symptoms (nausea, vomiting, diarrhea). A combination of several symptoms can lead to anaphylaxis in patients with severe CMA.

Infants and children with this type of allergy may develop vomiting and blood or mucus in the stool, similar to the symptoms seen with food protein– induced enterocolitis.

This is an enzyme deficiency of lactase as opposed to a true allergy to cow’s milk.

Hernandez-Trujillo noted that CMAs can resolve by adulthood, which also presents a challenge in estimating their true burden. Lowry noted that study results suggest that up to 80% of teenagers develop tolerance and essentially outgrow their CMA allergy.

“While rates of food allergy are increasing, it is not clear whether rates of cow’s milk allergy are increasing,” Hernandez-Trujillo explained. “Because the natural history of cow’s milk allergy leads to resolution in many patients, it is difficult to say whether increases are occurring over time.”

CMA prevalence also appears to depend on the test used for diagnosis, she adds. Current data show prevalence rates based on the following methods

0.2% to 2.5%, skin prick testing (SPT) alone

0% to 2%, symptoms and sensitization (SPT≥3mmorsIgE≥0.35kU/L)

Although data suggest that food allergies overall are rising, Hernandez-Trujillo said, it is not really clear if that includes CMAs, specifically. Geographic locations can alter prevalence too, she added.

Because dairy allergy is a common allergy that is usually first noticed by the parent, Lowry emphasized the importance of a detailed history as part of the assessment. Additional testing and referral to a pediatric allergist are common after dairy allergies are suspected, but even then, avoidance remains the primary treatment strategy, she added.

When a true CMA is confirmed, Hernandez-Trujillo said, it is crucial that the child avoid not only avoid milk but also other dairy products, including butter, yogurt, cheese, and ice cream. “Any product with cow’s milk should be avoided, especially in patients with severe cow’s milk allergy or anaphylaxis,” Hernandez-Trujillo said. “Food-label reading is essential.”

Avoidance isn’t always enough, though. Hernandez-Trujillo emphasized that pediatricians must teach parents how to handle severe reactions when accidental exposure occurs.

It’s important to monitor children with dairy allergies closely, because they have a higher risk of other food allergies too, Lowry said. Dairy allergies also appear to come with a higher tolerance, so monitoring patients as they age and offering food challenges later may help reduce allergy prevalence in later childhood or adulthood, she said.

Managing CMAs in the long run requires vigilance, with individual surveillance and education, Hernandez-Trujillo notes. Many nutritional alternatives to cow’s milk are available, and parents can benefit from having both a pediatrician and an allergist involved in their child’s care. Nuances of CMA can vary among patients, and coordinated care efforts can help identify where exceptions to avoidance might be made. Although some patients must avoid all dairy, others may need to steer clear of only uncooked forms, she said. Baking alters some of the milk proteins and reduces allergenicity.

“Depending on the patient’s clinical presentation and severity, pediatric allergists can work with pediatricians to identify patients who may be able to tolerate some form of cow’s milk,” Hernandez-Trujillo said. “The majority of pediatric patients will outgrow the cow’s milk allergy over time, and follow-up to determine when they outgrow the CMA is essential. For patients who do not outgrow the CMA, continued strict avoidance and immediate access to epinephrine are needed.”

Lakiea Wright, MD, MPH, a board-certified allergist and immunologist at Brigham and Women’s Hospital in Boston, Massachusetts, said that although the main treatment strategy for CMA is avoidance, an epinephrine autoinjector should be prescribed for individuals who have a physician-diagnosed IgE-mediated allergy. She adds that one large study of parent-reported food allergy found that just 26% of children with CMA had a current epinephrine autoinjector prescription.

“Being prepared to treat a severe allergic reaction is also imperative,” Lowry added. “For patients with severe reactions or anaphylaxis, strict avoidance of cow’s milk products and carrying injectable epinephrine at all times is essential.”

Caregivers also need to be educated on milk allergen avoidance, as well as how and when to use an epinephrine autoinjector. Investigators are testing different protocols for CMA immunotherapy to help achieve a maintenance dose and develop a tolerance for milk proteins, according to Wright. Until those tools are available, she said, it’s key to educate parents about CMA, including true allergy vs intolerance, and the importance of learning how to introduce common foods early to prevent common food allergies.

1. Food allergies. Centers for Disease Control and Prevention. Updated February 24, 2022. Accessed February 18, 2022. 

https://www.cdc.gov/healthyschools/foodallergies/index.htm

2. Gupta RS, Warren CM, Smith BM, et al. The Public health impact of parent-reported childhood food allergies in the United States. 

. 2018;142(6):e20181235. doi:10.1542/peds.2018-1235

3. Flom JD, Sicherer SH. Epidemiology of cow’s milk allergy. 

. 2019;11(5):1051. doi:10.3390/nu11051051



Articles

Experts note that, with cow’s milk allergies seemingly on the rise, pediatric health care providers can help parents be vigilant.

Increase in food allergies signals similar rise in cow’s milk allergy

There’s no evidence to suggest that teenagers and adults with normal growth and weight should be routinely screened for eating disorders, according to 

 from the United States Preventive Services Task Force (USPSTF),

 but experts in identifying and treating eating disorders disagree.

The recommendation didn’t claim that patients of normal weight and growth can’t have an eating disorder—only that there is not enough evidence to support a broad screening recommendation for the general public. Advocates, however, say this illustrates a gap in research more than anything.

Almost 5% of women and more than 2% of men in the United States are faced with some variety of eating disorder including anorexia nervosa, bulimia nervosa, binge eating disorder, and more. The isolation and stress of the COVID-19 pandemic has only increased this problem in recent years, 

according to an editorial that accompanied the statement

, causing a spike in the development of severe eating disorders and the need for hospitalization or other intensive treatments—especially in teenagers.

“These disorders commonly begin during adolescence and young adulthood and appear prevalent among individuals who present for general clinical care… Because some individuals with eating disorders conceal core illness symptoms—and avoid or delay seeking specialist care—due to feelings of embarrassment, stigma, or ambivalence toward treatment, screening for these disorders in primary care settings is especially important, as most cases of eating disorders remain undetected and untreated,” writes Evelyn Attia, MD, of the NYS Psychiatric Institute in New York City, New York, in an editorial on the recommendations for the 

Eating disorders are often recognized because of outward signs like weight loss and purging habits. Weight, height, and body mass index measurements are often used in the screening for eating disorders in primary care practice, but even the evidence report that accompanies the recommendation highlights the face that these disorders can also develop without any physical symptoms at all. Regardless of how a disorder presents itself, 

 published with the recommendation also notes that these disorders—whether obvious from weight measurements or not—can lead to a host of adverse effects like

Routine screening could help identify atypical presentations of eating disorders earlier, leading to quicker intervention and reduced mortality, suggests the report. However, none of the studies reviewed in consideration for the recommendation looked closely enough at the benefits and harms of routine screening, and how effective current screening tools might be in the general population.

Erin Harrop, LICSW, PhD, an assistant professor at the University of Denver in Colorado and a licensed medical social worker, called the agency’s decision against making a formal recommendation for screening “unfortunate.”

“We know that early identification is a key predictor of better outcomes long-term,” Harrop said. “Although much of the data supporting early intervention is for those in thinner bodies, I think this overall recommendation speaks much more to the lack of research about those in higher weight bodies rather than screening being not recommended.”

Harrop added that the lack of evidence to support a general screening recommendation also highlights the lack of data on effective interventions for eating disorders in higher weight populations overall. She continued that she is afraid the task force’s statement will be misinterpreted as an indication that eating disorder screenings in normal and higher weight populations are not important, rather than highlighting the need for more high-quality research.

“It is clear from our epidemiological studies that many people who are higher weight struggle with eating and body image issues; to not intervene and screen means these people could be struggling and hurting in silence, without professional supports to help facilitate recovery,” Harrop said.

Harrop shared that her clinical experience in treating patients with 

 has often uncovered a lack of screening—especially for teenagers—in the primary care setting. Symptoms like low blood pressure, weight loss, fainting, and menstrual cycle changes were overlooked by primary care providers and attributed to other causes like athleticism or anxiety, Harrop explained. Harrop and Attia both suggested that, in many cases, it takes a specialist who is trained in recognizing atypical presentations of eating disorders to identify and intervene in these cases.

“Although we do not have much information on treatment rates and timelines for people with atypical anorexia, the research that we do have speaks of people with atypical anorexia waiting longer for treatment than their thinner peers,” Harrop said. “This is problematic, because many are just as sick, physically, and early intervention is key to better outcomes. I worry that the suggestions about not explicitly recommending screening for higher weight folks will have many negative repercussions for people with atypical anorexia: longer treatment delay, more entrenched behaviors, increased feelings of hopelessness and suicidality, psychological distress, and a more difficult medical journey back to health.”

Harrop and other experts who have weighed in on the recommendation of the task force express hope that the obvious lack of data in this area will lead to new research instead of appearing as an endorsement for complacency.

Be sure to check out the May 2022 issue of 

The recent recommendation statement from the United States Preventive Services Task Force (USPSTF) that routine screening for eating disorders aren’t needed for teenagers with normal growth and weight was met with displeasure by experts in the field.

Calls for better research after USPSTF issues recommendation statement against routine eating disorder screening

When it comes to infant feeding, national and global health experts acknowledge that breast milk is the ideal source of nutrition for at least the first few months of life. Yet, according to the World Health Organization (WHO), just 2 out of 3 babies are breastfed for the recommended 6 months.

“If there are no contraindications to breastfeeding or breast milk, then there is no reason to use infant formula, as long as the mother is able to breastfeed and/or provide breast milk,” said Lori Feldman-Winter, MD, MPH, chair of the American Academy of Pediatrics (AAP) Section on Breastfeeding and a professor of pediatrics at Cooper Medical School of Rowan University in Camden, New Jersey. “If for some reason the mother cannot breastfeed or provide her baby breast milk, then infant formula is the recommended feeding source until 1 year of age.”

If mothers choose not to breastfeed even though they are able, infant formula is a viable option, though Feldman-Winter called it “a recognized and significantly substandard method of feeding.”

Both AAP and the WHO recommend exclusive breastfeeding for at least the first 6 months of life. Beyond that, continued breastfeeding is recommended until at least age 1 but in conjunction with the introduction of complementary nutritious solid foods.

Because there is no defined reason to transition from breastfeeding or use of breast milk to formula, Feldman-Winter said, there really is no official recommendation on the best time to make that move. “The only thing that may impact timing is if a mother becomes unable to continue breastfeeding or breast milk feeding for some reason, and at that time, infant formula is recommended,” she said. “The longer the mother breastfeeds or provides her milk for the baby, the better the health outcomes.”

Pediatricians should base guidance on the infant’s overall health and nutrition and counsel parents on the options and best practices for feeding.

There is no clinical evidence that 1 type of infant formula is better than another, according to Feldman-Winter. “If and when infant formula is introduced, it really does not matter which formula is selected, as long as it is commercially available and meets US Department of Agriculture [USDA] standards and is reconstituted according to guidelines developed by the USDA, the Centers for Disease Control and Prevention [CDC], and AAP,” she said.

Giving a bottle should be done with responsive feeding practices, following the baby’s cues to avoid overfeeding, Feldman-Winter said. “Bottle-feeding should follow the AAP guidance on responsive feeding, using bottles until about 6 months, and the infants may transition to staged cup feeding depending on development,” she said. “If feeding formula, the formula should be mixed according to guidelines provided by the manufacturer and not altered. Some babies prefer warm breast milk or formula to mimic the temperature of direct breastfeeding.”

The CDC echoes AAP’s position that breast milk is the healthiest option for both infants and mothers in the first few years of life, but the agency also acknowledges that both mothers and babies may decide to stop breastfeeding at any point.

According to the CDC, common reasons parents stop breastfeeding early include:

insufficient infant nutrition or weight gain,

concerns about medications the mother is taking,

challenges related to work or parental leave policies,

lack of support from health care providers and/or hospitals.

The timing of weaning, from breast milk to both formula and solid foods, is a personal decision, the CDC states.

 The agency suggests that parents interested in weaning an infant from breast milk to formula substitute 1 formula feeding for a breast milk feeding per day to start, gradually increasing the frequency of substitutions.

Breastfeeding rates have not risen much in the past few decades, but the push to increase the practice really took hold in the mid-2010s. That is when the Breast Is Best initiative launched a campaign to encourage hospitals to achieve a Baby-Friendly designation and support breastfeeding mothers. By the end of the campaign, overall breastfeeding rates grew by about 4%, and exclusive breastfeeding increased from 39% to 61%.

However, in the years since the campaign’s launch, some researchers and advocacy groups have questioned the “breast is best” narrative, suggesting that proper nutrition, not how it is provided, is key.

The Fed Is Best Foundation, a national nonprofit group staffed by volunteer health care professional and parents, suggests that research findings point to a rise in hospitalizations of exclusively breastfed infants due to feeding complications from poor milk production or constitution. In 2018, a paper in the 

 called the Breast Is Best campaign into question, arguing that anxiety, depression, and mental health complications mothers face in the breastfeeding process should be considered when weighing the risks vs benefits of breastfeeding.

La Leche League International suggests that parents who plan to switch from breastfeeding to bottle-feeding breast milk wait until about the fourth week of breastfeeding.

 If supplementation is needed, several types of manufactured formulas, including cow’s milk, soy based, and hypoallergenic, are available to meet infants’ needs.

Pediatricians should be sure that formulas offered to infants are USDA approved and warn parents never to use homemade formulas or stray from the manufacturer’s mixing guidelines.

1. World Health Organization. Breastfeeding. Accessed February 15, 2022.


https://www.who.int/health-topics/breastfeeding#tab=tab_1

2. Recommendations and benefits: breastfeeding. Centers for Disease Control and Prevention. Updated July 9, 2021. Accessed February 15, 2022.


https://www.cdc.gov/nutrition/infantandtoddlernutrition/breastfeeding/recommendations-benefits.html

3. Facts: key breastfeeding indicators. Centers for Disease Control and Prevention. Updated August 24, 2021. Accessed February 15, 2022.


https://www.cdc.gov/breastfeeding/data/facts.html

4. Weaning. Centers for Disease Control and Prevention. Updated July 9, 2021. Accessed February 15, 2022.


https://www.cdc.gov/nutrition/infantandtoddlernutrition/breastfeeding/weaning.html

5. Feldman-Winter L, Ustianov J, Anastasio J, et al. Best fed beginnings: a nationwide quality improvement initiative to increase breastfeeding. 

. 2017;140(1):e20163121. doi:10.1542/peds.2016-3121

6. About/FAQs. Fed Is Best Foundation. Accessed February 15, 2022. 

7. McIntyre LM, Griffen AM, BrintzenhofeSzoc K. Breast is best…except when it’s not. 

. 2018;34(3):575-580. doi:10.1177/0890334418774011

8. Introducing a bottle to a breastfed baby. La Leche League International. August 2018. Accessed February 15, 2022.


https://www.llli.org/breastfeeding-info/introducing-a-bottle-to-a-breastfed-baby/

9. Nemours KidsHealth. Formula feeding FAQs: getting started. Updated November 2021. Accessed February 2022.


https://kidshealth.org/en/parents/formulafeed-starting.html

Experts still advocate for breast milk, but pediatricians must be able to offer advice on all options for feeding babies

Breast may be best, but bottles do the job too

Early recognition and intervention are 2 of the most important tools in the pediatrician’s arsenal when it comes to developmental delays. However, because best practices for developmental surveillance and official guidelines have never been developed, there are missed opportunities for some children who may be falling behind their peers.

The Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) recently joined efforts through the CDC-funded “Learn the Signs, Act Early” Program to review and revise checklists for developmental surveillance.

The group’s goal was to use evidence-informed milestones to help pediatricians know when and how to screen children between recommended ages. The result of their efforts was the creation of new resources that can help open conversations about development timelines.

Jennifer Zubler, MD, FAAP, a pediatrician based in Atlanta, Georgia, and lead author of the report, said the goals of the new checklists are to identify and help children with developmental delays or disabilities sooner.

“Developmental delays and disabilities are common,” Zubler said. “Evidence shows that starting supports as early as possible is best. The earlier a child is identified; the sooner targeted intervention and family supports can start.”

These surveillance tools are just 1 part of the effort to identify children with delays early, she aded. Development surveillance already occurs at each well-child visit, but these are different that the screenings addressed in this report.

“The revisions were designed to alert parents and early childhood professionals on when to act and do additional developmental screening, beyond the universal developmental screenings,” Zubler explained.

Historically, developmental checklists have listed average or median ages when children were expected to reach certain milestones, but they gave little guidance for clinicians or caregivers on when to be concerned about deviations from those norms. The report explained that most clinicians take a “wait-and-see” approach when encountered with children who miss milestones, assuming they are just on the later end of the “average” spectrum. However, the report points out that CDC focus groups with parents of children with disabilities reveal they often face treatment delays because they have been told that missed milestones are common as children develop at different rates.

In 2004, the CDC developed a series of free checklists for parents to help them identify warning signs when it comes to missed milestones. These checklists featured signs that development may indeed be delayed and not just a result of natural variation. Although these lists were a good start, the CDC/AAP efforts identified several areas for improvement, including additional surveillance periods and clarification on what percentiles are considered for each milestone.

For example, the group suggests that all milestones should be easily observed in the natural setting in 75% or more of children at a given age. Previous versions of the checklists used the 50th percentile as a cutoff.

The group ended up adding milestones for the 15-month and 30-month well visits, reducing about a quarter of CDC’s previous milestones, and replacing another 40%. A third of the milestones in the previous checklist were moved around to different ages, with most of them—about 67%—being moved from lower to higher age groups.

Development surveillance is important for all children, but especially for those with developmental delays or disabilities. Regular screening plus additional screening based on clinical judgment is an important way to identify and act early when these delays are identified.

In the end, the group took the CDC’s previous 216 milestones across 10 checklists and transformed them into 159 milestones across 12 checklists. About 60% of the milestones in the final version were based on CDC’s original milestones, and about 40% were added as a result of the work of the research group. A third of the CDC’s milestones that were left in the final checklists were moved to older age groups considering that 75% or more of children were now expected to be able to meet these milestones instead of 50%.

When looking at the changes by category, the group made the following changes:

A 27.5% decrease in social-emotional milestones

These checklists are not intended to be a firm guidance tool when it comes to development, but an opportunity to prompt discussion between parents and clinicians.

These health communication tools can increase awareness of development delays and encourage parents and clinicians to ask more open-ended questions about a child’s development.

“The revisions attempt to provide families and early childhood providers with actionable milestones that, if missing, would encourage providers and families to take the next step and do developmental screening,” Zubler noted. “These are not guidelines or standards and never have been. They are part of health communication tools specifically designed to support developmental surveillance.”

The use of milestone checklists in pediatric practice has increased from 53% in 2003 to 89.6% in 2016, but they are intended to complement—not replace—universal developmental screening guidelines.

According to the report, early identification and intervention improves outcomes for the 1 in 6 children with development disability, yet less than a quarter of these children have their needs identified and get help before age 3 years. In many cases, children with emotional, behavioral, and development conditions don’t receive intervention services until around age 5 years. Although developmental screening is important, ongoing surveillance as outlined in these checklists may be able to help pediatricians get these children the help they need sooner.

Zubler said there are additional features of these checklists that can help parents and families, too. These include:

Informing parents that routine developmental screening is recommended at specific ages and any time there are concerns

Encouraging caregivers to attend well visits

Informing families about how to access early intervention programs in their state

Supporting families with tips and activities to encourage their child’s development

“The hope is that more children will receive additional developmental screening, when developmental surveillance indicates concern, whether those concerns are based on developmental milestones, answers to open-ended questions, or other developmental concerns families or early childhood professionals may have,” Zubler added.

1. Zubler J, Wiggins L, Macias M, et al. Evidence-informed milestones for developmental surveillance tools. 

. February 2022;149(3):e2021052138. doi:10.1542/peds.2021-052138.

The “Learn the Signs, Act Early” Program, an effort of the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP), updates developmental surveillance tools to promote timely surveillance and intervention.

CDC, AAP update developmental surveillance tools

Novel therapies are constantly being developed—with dozens of new treatments predicted for approval over the next decade. What isn’t moving as quickly is the ability to offer these therapies in a timely way to the children who need them most because newborn assessments failed to identify the conditions they are designed to treat.

Newborn screening (NBS) tests are used to screen for about 35 core disorders at birth, but many novel treatments target disorders that are not included in the screening and go untreated as a result.

 industry experts highlight the need for better screening tools that offer quicker review and implementation of standards as novel treatments are developed.1 The study called for significant changes to current screening tools, as well as an overhaul of the way new disorders are added to these assessments.

“NBS will soon need to adapt to 2 major forces—advanced technologies such as genome sequencing, and a new generation of therapies,” said lead author Donald B. Bailey Jr., PhD, a distinguished fellow in the Genomics, Bioinformatics, and Translational Research Center at RTI International in Research Triangle, North Carolina. “Although each poses a different set of challenges, they are inextricably linked and the needed system-level changes are similar. We chose to focus on the treatment side of things, to limit the discussion.”

A new screening tool is critical to address the large and “growing pipeline” of novel treatments already in development across many different companies, Bailey added.

The current NBS tool is really just a recommendation created jointly by the US Department of Health and Human Services Recommended Uniform Screening Panel (RUSP) and the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). States use this guidance to create their own screening tools, which generally include about 30 disorders that may appear at birth and benefit from early treatment. However, the new report argued that these recommendations aren’t keeping pace with novel therapies, and as a result there are missed opportunities for meaningful intervention.

Only 6 new disorders have been added to the RUSP/ACHDNC recommendations since 2006. Part of the problem, the report notes, is that even with the shortest timeline, it takes about 2 years for new conditions to be considered, reviewed, and recommended by the panel. After that step, it takes states about 3 to 5 years on average to add those recommendations to their screening tools.

The paper provided a significant example in the case of a treatment for spinal muscular atrophy. Nusinersen was first suggested to the RUSP/ACHDNC organization in 2008, but was not recommended until 2018. This means that more than a decade likely passed when infants when this condition could have potentially benefitted from including a screening for this disorder at birth.

“Disorders previously lacking treatments could soon have interventions that are curative or significantly disease-modifying,” the report authors noted. “Their efficacy almost certainly will be maximized if provided early, underscoring the necessity of early screening and diagnosis.”

Even if a national recommendation is made more quickly, the report authors argued that it sometimes takes states several years more to add these screenings to their own assessments—if they are added at all.

“Families, patient advocacy groups, and clinicians are frustrated by what they consider an unnecessarily long process of decision-making and implementation, resulting in preventable death, disability, or a lifetime of needed care,” the report noted. “Policy makers, on the other hand, are concerned about adding new disorders without adequate evidence. Additionally, most state NBS laboratories cannot add new disorders without legislative approval, funding, and time to ensure adequate implementation.”

The problem, however, is that most newborn assessments don’t look deeply enough to identify the needs that many of these novel therapies could treat. Some of these challenges new therapies could pose in regard to screening is that many of them will require some form of genetic testing and ultimately genome sequencing.

“These would-be new technologies that would require a major shift in screening methods for most states,” Bailey said.

The program needs a substantial overhaul, the report continues, since its current setup is that of a loosely interconnected web of independent state programs. As new therapies evolve, this system is not equipped to be able to readily adapt to changes and updates. The paper stops short of suggesting a better system, but spells out the urgent need to develop a more responsive, next-generation system. The report authors call for things like extensive stakeholder engagement, the cooperation of federal and state agencies, and national legislation in developing a new screening system.

The main goal of establishing a new system for creating and updating guidelines would be to ultimately bring the benefits of new treatments to babies who need them more quickly, Bailey explained.

“Pediatricians could potentially be caring for more children with rare disorders who need specialized treatments,” he said. “Although some of these treatments will need to be provided at a specialty clinic, pediatricians will always remain the most trusted source of information for families.”

1. Bailey DB, Porter KA, Andrews SM, Raspa M, Gwaltney AY, Peay HL. Expert evaluation of strategies to modernize newborn screening in the United States. 

 2021;4(12):e2140998. doi:10.1001/jamanetworkopen.2021.40998

Many new therapies have been developed over the past decade to treat disorders that are often present at birth and early treatment can lead to better outcomes. However, the screenings for newborns have been slow to adapt.

Experts call for better newborn screening to take advantage of novel therapies

Patients are still confused about the flu shot, but vaccination rates seem to be higher for this emerging flu season.

 found that misconceptions about the flu vaccine are at a three-year high. The microsurvey, conducted for the third year by InCrowd, polls primary care physicians on perceptions about the flu vaccine.

This year’s report revealed that while most patients are agreeing to the flu shot this year, 51 percent of the physicians polled reported having to clear up patient misconceptions about the flu, up from about 44 percent in previous years. Overall, the survey found that 61 percent patients were agreeing to receive the vaccine this year, up from 57 percent in 2017 and 55 percent in 2016, and 18 percent were vaccinated at a pharmacy or grocery store rather than a physician’s office.

Margot Savoy, MD, MPH, chair of family and community medicine at the Lewis Katz School of Medicine at Temple University and one of the 

Center for Disease Control and Prevention’s designated “flu fighters,”

 said this year’s flu season is off to a slower start than last year, when many deaths and hospitalizations were already being observed by this point a year ago. But as flu cases start to rise, it’s not too late to talk about vaccination.

Savoy was not involved in the creation of the poll, but after reviewing it agreed that there is still a lot of room for educating patients.

While Savoy said hasn’t seen so much of an increase in misconceptions, there are misconceptions that seem to never go away. Getting young, healthy patients vaccinated remains a challenge, she said, because they don’t see the flu as a big threat, but it’s the friends and family members they could infect that remain at the biggest risk.

“Few elderly ever get back to baseline after admission for flu,” Savoy said. “They often get the shot, but are infected by healthy, young family members.”

Savoy said there are steps clinicians can take to help patients overcome misperceptions about the flu vaccine. This starts with educating patients about the vaccine early on, and being prepared for vaccination season when the time comes.

“Plant seeds! Don’t wait until October to start talking about influenza. During the routine visits in the summer use anticipatory guidance to give patients a heads up that when you see them next it will be time for their flu vaccine,” Savoy said, adding that clinicians should pay special attention to high-risk patients. “Pay attention to the patients with chronic diseases. They often have a lot going on to cover in 15 minutes, but these are the patients who need influenza and other vaccines the most. If they get sick their chance of being hospitalized or dying is significantly higher.”

She said practices should prepare to be stocked with the vaccine when flu season rolls around, and have reminders ready for both staff and patients about administration.

“Use the known best-practices. Stock vaccine. Use standing orders. Offer immunization walk-in clinics. Promote the vaccine on your phone message, website and in the waiting room. Send reminder messages,” Savoy said.

For patients who still hesitate despite being educated, remain vigilant and don’t give up.

“Respect the patient’s concerns and leave the door open for them to change their minds. Not every patient is going to agree to be immunized. I know that is hard for us to see people taking unnecessary risks for a disease that we know can be devastating,” Savoy said. “Don’t get discouraged or angry. Thank the patient for sharing their concerns with you. Offer information for them to take home. Most importantly, offer them the opportunity to come back. Many patients who initially told me no have returned to be vaccinated once they had time to think about it more.”

Savoy said the end of a visit that doesn’t include a vaccine doesn’t also have to be the end of the conversation.

“I document our conversation in my note so I can pick up where we left off when I see them next,” she said. “There is a reason marketing folks show you the same commercial 10 times in an hour. If at first I don’t succeed I try again next visit.”

It is interesting to note that patients who in the past expressed concerned about getting the flu from the flu shot have now shifted to saying that they will simple get sick, Savoy said.

“I now find myself explaining a lot more about how the immune system works. That you are supposed to feel that way when the body reacts to the vaccine, and that those are signs of the immune system working,” Savoy said. “Actually, it’s not bad if you are sick for a day or two. For some people, I’ve convinced them to come back on a Friday and get it so they feel sick over the weekend instead of during the work week.”

Savoy said also asks patients about big events coming up and work with them to schedule their shot at the most convenient time in order to increase compliance.

“I have had a lot more people who in the past have told me ‘no’ who were able to be persuaded this year,” Savoy said, adding that she believes last year’s severe flu season may have had a positive impact on vaccination rates this year.

“The part people miss is that while the efficacy of the vaccine itself is fairly low, but some protection is still better than no protection, and that’s the message that hasn’t really gotten across,” Savoy said.

This article was originally published by sister publication Medical Economics.

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