by tyler | May 12, 2023 | CNN, health
As the US faces a near-record number of drug shortages, cancer treatments are among the hardest hit.
There is an active shortage of about two dozen chemotherapy drugs, the fifth most of any drug category, according to data from the end of March from the University of Utah Drug Information Service.
“The fact that we have this many chemo drugs in shortage is really concerning,” said Michael Ganio, senior director of pharmacy practice and quality at the American Society of Health-System Pharmacists.
Unlike some other drugs that also rank among the top five categories for shortages, such as antimicrobials, there aren’t often alternatives for chemotherapy drugs, he said. And the shortages are affecting treatment for a broad range of cancers.
“One of the key predictors of how well a patient will respond to treatment is getting a full dose on the right schedule,” Ganio said. “So when we can’t give the drug because we just can’t get the drug, that’s heartbreaking.”
Overall, data from the University of Utah shows that there were more than 300 drugs with an active shortage in the US at the end of March, including nearly 50 new shortages that accumulated in the first three months of the year.
The last time active drug shortages – including both newly reported and ongoing – were this high was in 2014, the data shows.
“Shortages are still happening, and they’re not resolving, or they’re not resolving as quickly as new shortages are starting,” Ganio said.
On Thursday, the US House of Representatives’ Energy and Commerce Subcommittee on Oversight and Investigations held a hearing exploring the root causes of these shortages.
Increased demand is part of it. But experts say that some high-profile shortages – such as amoxicillin during the most recent respiratory virus season and Adderall for ADHD – are the exception.
“They don’t really tell the story of drug shortages,” Ganio said.
Instead, the hearing was more heavily focused on manufacturing issues and the broader structure of the drug market in the US.
The US Food and Drug Administration, in particular, was criticized for falling behind on inspections, especially of international facilities that represent more than half of manufacturers that supply the US.
A report from the Government Accountability Office, a federal watchdog agency, in January 2022 noted “longstanding challenges” facing the FDA’s Foreign Inspection Program and called for more formal steps to improve it.
Effective inspections of both domestic and foreign manufacturing facilities are “absolutely essential for ensuring the quality and the safety of the medicines that US citizens consume,” said Anthony Sardella, chair of the API Innovation Center, a nonprofit focused on building the supply of US-made pharmaceuticals.
“They’re also extremely important in ensuring the stability of the market,” said Sardella, who was a witness at the hearing.
But in a hearing Thursday of the Energy and Commerce Subcommittee on Health, FDA Commissioner Dr. Robert Califf said that the economic issues underlying drug shortages are “not in the purview of the FDA.”
The FDA is “plugging holes in the dike,” he said, but it’s difficult to motivate change when it’s not profitable for drug companies.
“These drug shortages are becoming more prevalent due to a warped marketplace,” said Rep. Kathy Castor, D-Florida, ranking member on the subcommittee.
“The current haphazard approach of addressing crisis episode-by-episode is not working to give American families the certainty and the quality of care they need and deserve.”
Hundreds of impending shortages loom, and Califf called on drug companies to alert the FDA to them.
“Each company doesn’t know what the other company’s doing because they’re competing,” he said. “When there’s a shortage in one company, we need to be able to coordinate across these people.”
Outside of the FDA, there is a small team of officials at the White House focused on bolstering drug supply chains and quality, a senior administration official confirmed to CNN. The team was first reported by Bloomberg News.
The team, the senior official said, has been “meeting for some time” and is made up of “several” White House offices, including the Domestic Policy Council and the National Economic Council.
“The Biden-Harris Administration remains focused on strengthening the resilience of critical supply chains, including for medical products like pharmaceuticals,” the official said, pointing to five executive orders issued by President Joe Biden since taking office aimed at “[catalyzing] whole-of-government action toward these objectives.”
Blame aside, patients remain at the heart of the issue.
“There is severe patient impact happening every day,” said Laura Bray, founder of Angels for Change, an advocacy group focused on ending drug shortages. “We also can’t forget the emotional trauma that you’re putting on a family in medical crisis.”
She experienced it firsthand in 2019 when her 9-year-old daughter, Abby, couldn’t get the drug needed to treat her leukemia because there was a shortage.
Abby is doing well now, but 9 out of 10 oncologists say that drug shortages have led to patient harm, including death, said Bray, who was a witness at the Oversight hearing Thursday.
“Patients deserve access to these medicines. The physicians and nurses and care team who are trying to solve these crises and save them deserve easy and equal access to these medicines.”
by tyler | May 9, 2023 | CNN, health
May 10 is World Lupus Day, an annual global event spotlighting the complex disease and ways to improve quality of life for those suffering from it.
Lupus is an autoimmune disease; the body’s immune system attacks healthy cells leading to pain, fever, rashes, organ damage and other symptoms. The Lupus Foundation of America estimates more than 5 million people live with the condition which affects each person differently, making Lupus difficult to treat and particularly hard to diagnose.
“Research has shown that it can take an average of six years to diagnose lupus from the time someone starts experiencing symptoms,” said Mary Crimmings, interim CEO of the Lupus Foundation of America (LFA).
These delays can bring devastating consequences for patients. Since there’s currently no cure for lupus, researchers, advocates, and patients are banding together to improve healthcare services and research into the disease.
Lupus can be managed once it’s identified. But treatment remains challenging. Over the last seven decades, the US Food and Drug Administration has approved just three therapies specifically for lupus.
Many patients take chemotherapy and antimalarial medications off-label to control symptoms, often with serious side effects.
Lupus drug development lags compared to other therapies primarily because of the disease’s unique complexity and variation.
“There are issues in clinical trial design outcome measures, and the community realizes that these are challenges that not one group can solve,” said Hoang Nguyen, Ph.D from Lupus Research Alliance (LRA). “It requires all the stakeholders, including the FDA, to come together.”
The FDA’s Center for Drug Evaluation and Research has partnered with the Lupus Research Alliance (LRA) to launch the Lupus Accelerating Breakthroughs Consortium (Lupus ABC), a first-of-its-kind public-private partnership focused on addressing difficulties with lupus clinical trials and accelerating therapy development.
To address scientific difficulties facing drug research, Lupus ABC brings together medical societies, academics, clinicians, the FDA, and – most importantly– people living with lupus.
“The major goal of the consortium is to bring the voice of people with lupus to the forefront,” said Nguyen.
The input of lupus sufferers is essential for patients like Kaamilah Gilyard, who has participated in four clinical trials.
“This is a big step in the right direction, and I hope things will move faster,” said Gilyard.
“The more people support research for the disease, the better the arsenal of effective treatments that will become available,” added Crimmings.
CNN’s Impact Your World has gathered ways you can help support lupus lupus patients and help fight this disease.
Educate yourself
“You don’t look sick.” That statement, though often intended as a compliment, can feel extremely insensitive and dismissive to people dealing with the condition. .
“Don’t always tell me I’m looking great because inside, my body is feeling like crap. My body is destroying itself,” said Racquel Dozier, lupus warrior and founder of Lupus in Color, an international support group empowering lupus patients.
“It leaves people feeling misunderstood and isolated,” explained Crimmings, “and sometimes it feels like people don’t believe they are actually ill.”
Lupus is often called an “invisible illness” because symptoms are not outwardly obvious. But it’s important to remember that while someone may appear fine on the outside, they may be dealing with painful, chronic and even life-threatening circumstances.
The best way to avoid committing this offense is to educate yourself. LFA’s National Resource Center on Lupus has a wealth of educational content from doctors, scientists, health educators, and people with lupus.
Raise awareness
“The more awareness there is about the devastating impact of lupus, the more support there will be for funding lupus research, education and support programs,” Crimmings told CNN.
Most people don’t know what lupus is or how it affects the body, and you can change that using your voice person-to-person or through social media. LFA is campaigning to make lupus visible, and you can help using their toolkit and your social media accounts to spread awareness.
You can also post a photo of yourself wearing purple on social media with #LupasAwarenessMonth and #WorldLupusDay along with a brief reason why you support the cause.
There’s also the Team Make Your Mark™ Virtual 6 Challenge. Between June 23 and June 28, you can run, hike, bike, paddle or swim in any location for 6 days to raise awareness and funds to fight lupus.
Become an advocate
Advocates work for all people with lupus, their families, and the health professionals who care for them. They educate government officials and industry leaders on expanding investment in lupus research, education programs, and support services.
Most advocacy around lupus focuses on stimulating federal support for treatment, research and, ultimately, a cure. The latest push resulted in the Lupus ABC partnership with the LRA and the FDA.
Gilyard, who was diagnosed with lupus at 17, is determined to change the lives of future generations living with lupus.
“When I was diagnosed, I had no role model, no one to call, nowhere to look.”
Much of Gilyard’s advocacy centers around engaging her community to participate in lupus research, to help overcome the lack of diversity in trials and to promote equity in healthcare among populations of color.
“I like to speak to people, and I like to clear the air and address the issues from a grassroots perspective,” Gilyard expounded.
“I want people to have options when I felt like I had none.”
Your voice can be an asset too. Meet with, email, or tweet your elected officials and tell them about the important lupus policy issues. If you or someone you love has lupus, share your story; it could help save lives.
Volunteer
Racquel Dozier knows the power of volunteering. After being permanently disabled by lupus in her 30’s, she fell into a spiral.
“It had to become an inside job to change the feelings of pain, sorrow, and guilt that I had because I had to stop working.”
The Henrico County, Virginia resident searched for a support group but struggled to find one with patients who looked like her.
“I decided to start Lupus in Color to make sure that Black women were represented and so that I could help others – and we can help each other,” Dozier told CNN.
The former social worker and educator now harnesses many of the skills from her former career.
“I took all the skills I learned through college and work experience, and I use all of it through Lupus in Color,” Dozier said.
“I’m still working; I’m just not getting the dollars.”
Crimmings suggest those interested volunteering contact a local lupus charity and share their skillset to see how to help. There are opportunities ranging from clerical work to support groups to organizing events.
Make a donation
We all know how crucial funding is regarding research, but little is said about patients’ financial burdens.
“Lupus can have a significant economic impact,” shared Crimmings.
“Many people don’t realize that people with lupus are having infusions or may be on dialysis for kidney disease, and sometimes people are unable to work,” Crimmings said. A recent study in the Journal of Rheumatology revealed a high cost for people with severe lupus ($52,951 average per year), compared with moderate disease ($28,936) and mild disease ($21,052). For the underinsured, this can be a substantial financial burden that discourages some people from seeking treatment.
Organizations like Patient Advocate Foundation and the Healthwell Foundation are helping patients bear the costs. Unfortunately, Healthwell’s fund specifically for Systemic Lupus Erythematosus had to close to new applicants because of insufficient funding.
Participating in a walk, whether alone or as part of a group, is a fun way to help fund important research. Both LFA and LRA sponsor walks throughout the year.
“Lupus is more pervasive than people think and impacts people on a scale that the public does not realize,” said Crimmings.
Click the button below to donate to any of the organizations mentioned above and others supporting patients living with lupus.
by tyler | May 9, 2023 | CNN, health
Black and Hispanic people who grew up in Chicago were exposed to gun violence at a “significantly and persistently higher rate” by age 40 than their White counterparts, a new report shows.
The findings were published Tuesday in the journal JAMA Network Open and stem from a survey that followed the lives of thousands of children in Chicago since the mid-1990s. In the new report, researchers examined the exposure that some of the survey’s participants had to gun violence from 1995 to 2021.
Researchers from Harvard University, the University of Cambridge and the University of Oxford analyzed the answers of 2,418 participants – including Black, Hispanic and White people who were born in 1981, 1984 and 1996 – and found that witnessing or becoming a victim of gun violence varied by race or ethnicity and age.
By the time the participants turned 40, about 56% of Black respondents and nearly 55% of Latinos said they had seen someone else get shot, compared with nearly 26% of White respondents, the report says.
While only 6.4% of all respondents said they had been shot by age 40, the report shows a disparity among the racial and ethnic groups. About 7% of Black and Latino participants said they had been shot, compared with 3.1% of White participants.
Researchers said changes in society were key factors on whether and at what stage a person was exposed to gun violence. Those who were born in 1987, they said, had the lowest incidence of being shot because they were teenagers when gun violence was “at its lowest point in the past 3 decades.”
The findings may not be representative of the entire country as they are centered in the experiences of people in Chicago, the report says, but violence rates and trends in the city – America’s third largest – may be parallel to those in other major cities.
The report does not offer details on the consequences of gun violence exposure, but a commentary by Dr. Jonathan Jay that was published Tuesday along with the new study says exposure to it has lasting impacts for youths and their loved ones.
Indirect or direct exposure “can influence mental and physical health outcomes over the life course” and “it is crucial to continue scaling up public health programs to halt the violence surge and deal with its aftermath, especially through community-based outreach programs and trauma-informed services,” said Jay, an assistant professor of community health sciences at the Boston University School of Public Health who was not involved In the new research.
by tyler | May 9, 2023 | CNN, health
The American Psychological Association is calling for teens to undergo training before they enter the sometimes fun but sometimes fraught world of social media, according to new recommendations released Tuesday.
“Social media is neither inherently harmful nor beneficial to our youth,” said Dr. Thema Bryant, the APA’s president. “Just as we require young people to be trained in order to get a driver’s license, our youth need instruction in the safe and healthy use of social media.”
Bryant assembled an advisory panel to review the scientific literature on social media use and formulate recommendations for healthy adolescent use, according to an APA news release.
The American Psychological Association Health Advisory on Social Media Use in Adolescence released 10 recommendations to guide educators, parents, policymakers, mental health and health practitioners, technology companies and adolescents.
The recommendations emphasize that adolescents should have instruction in social media literacy and psychological development before joining social media as well as occasional training to bolster their knowledge as they go along, all to minimize potential harm.
They also advise that social media use should be tailored to the child’s developmental stage — and monitored by adults in the case of younger children.
Imposing limitations is also important when it comes to content that promotes self-harm, eating disorder behavior, discrimination, hate, cyberbullying, or that is primarily beauty focused, the release said.
The recommendations also encourage limitations on when adolescents use social media, so as not to interfere with sleep or physical activity.
Optimal social media use won’t look the same in every child, which is why the panel said recommendations need to be paired with knowledge of individual strengths, weaknesses and context.
“Age-appropriate use of social media should be based on each adolescent’s level of maturity (e.g., self-regulation skills, intellectual development, comprehension of risks) and home environment,” the release said.
As a clinician, Ohio-based psychologist Dr. Lisa Damour said she often recommends families make different rules even for the different kids in their household.
“The number one guideline in making rules for kids is that it’s important to know your child,” she said.
There was also a lack of sufficient research into social media use of “youth from racial, ethnic, sexual, gender, socioeconomic or differently abled populations, and/or youth with chronic developmental or health conditions,” the release said.
The APA also called for more investment in research funding to access more data.
Given the research available, the APA cannot say if social media is helpful or harmful to young people, especially considering both the risks of harmful content and the rewards of healthy socialization.
“Some parents villainize all social media by claiming it offers zero value in a young person’s life, when it’s clear that there are many upsides to learning how to use social media tools creatively, appropriately, and responsibly,” said Michelle Icard, parenting educator and author of “Fourteen Talks by Age Fourteen: The Essential Conversations You Need to Have With Your Kids Before They Start High School.”
“At the same time, without proper mentoring and guidance, of course it can be harmful,” she added.
But the APA will continue to monitor developments in research on current and future platforms, said Dr. Arthur C. Evans Jr., the APA CEO.
“We hope these recommendations will be helpful as we all try to keep pace with the rapidly shifting social media ecosystem,” he said.
When it comes to teens, safety is something we need to do with them – not to them, said Damour, author of “The Emotional Lives of Teenagers: Raising Connected, Capable, and Compassionate Adolescents.”
“I think this advisory gives parents a roadmap for the kind of helpful conversations they could be having with their teenagers about how to use social media safely,” she said.
But how do you convince a teenager to get on board with safer social media use? It’s all about collaboration, Damour said.
“It’s critically important that we help tweens and teens understand that social media platforms have a single aim, which is to harness their attention in the interest of making money,” she said. “We have excellent research showing that when teens are alerted to how they’re being manipulated by adults, they become more resistant.”
It’s the job of adults to keep up with teens social media practices to make sure the content they are seeing on these platforms is appropriate, she added. Social media feeds can push dangerous content, so it is important to know what you need to talk with your teen about.
“We want as adults to be very aware of the content and norms in the digital environments where kids are spending time,” Damour said.
Teens are experiencing much of their social life on social media, and rather than shame it, we should collaborate with the younger generation, she said.
“Rather than being against social media, the advisory supports parents and being for the activities that we know promote healthy growth and kids,” Damour added.
by tyler | May 9, 2023 | CNN, health
For decades after returning home from World War II, my grandfather did not talk about his wartime experiences.
Frank Murphy flew 21 perilous missions as a navigator of a B-17 for the Eighth Air Force’s 100th Bomb Group, nicknamed “the Bloody Hundredth.” The day his plane was shot down in 1943, two of the men in his crew died, and my grandfather considered himself lucky to have parachuted out of his burning aircraft and be captured by the Nazis.
For the next 18 months, he would endure deplorable conditions as a German prisoner of war, take part in a harrowing death march in subzero temperatures and by the time US Gen. George S. Patton’s troops liberated him, he had lost over 50 pounds and was riddled with dysentery, pneumonia and lice.
Everyone could see the physical toll of war on his body, but we didn’t know about his invisible wounds.
That is until 2001, more than 50 years after returning home, when my grandfather wrote a memoir, “Luck of the Draw: My Story of the Air War in Europe,” for our family. He originally self-published the book for our family but as I got older, I felt his story needed to reach a wider audience. After several years of gathering his original materials and photographs, I partnered with St. Martin’s Press to release the book in February and it is now a New York Times bestseller.
In his book, he wrote, “I often wonder why Providence allowed me to survive when so many others did not.”
My mother and his other three children said that their dad never spoke about the war during their childhood. It wasn’t until my mom read his book that she truly knew what he had gone through.
Even my grandmother Ann, his wife of 50 years, told me that she did not even know that her soon-to-be-husband had been a prisoner of war until right before they were married.
Researching my grandfather’s time during the war, I’ve often wondered if he had post-traumatic stress disorder. I may never know whether he had PTSD or not — but in the 78 years since World War II ended, it’s so vital that the national conversation around this important topic is moving forward.
It’s had different names throughout history. After World War I, it was “shell shock”; post-World War II it was known as “combat fatigue,” and after Vietnam it was called “post-Vietnam syndrome.” In 1980, the American Psychiatric Association officially recognized it as post-traumatic stress disorder, or PTSD.
Post-traumatic stress disorder “is a psychiatric disorder that may occur in people who have experienced or witnessed a traumatic event, series of events or set of circumstances. An individual may experience this as emotionally or physically harmful or life-threatening and may affect mental, physical, social, and/or spiritual well-being,” according to the American Psychiatric Association’s website. “Examples include natural disasters, serious accidents, terrorist acts, war/combat, rape/sexual assault, historical trauma, intimate partner violence and bullying.”
Now professionals such as psychologist Shauna Springer and psychiatrist Frank Ochberg are advocating calling it post-traumatic brain injury.
“I refer to it as an injury because I’ve seen that there’s a biological component to being exposed to trauma as well as a psychological component that has always been with us,” Springer, chief psychologist at the Stella Center, told me. “And now I think we’re on the cusp of evolving the term further.”
Post-traumatic brain injury has always existed, Springer said, and people are finally talking about it.
“It’s kind of like saying that because the divorce rate was so much lower in previous generations that everybody had these great marriages,” she said, “but actually that was a factor of how much stigma there was about divorce and how dependent women were financially at that time without their own career options.”
Forty percent of medical discharges during WWII were for psychiatric conditions, most for combat stress, according to the National World War II Museum In New Orleans.
But veterans didn’t always mention their trauma when they came home from the war.
“When your grandfather and my grandfather served in World War II, they didn’t talk about it,” Paul Rieckhoff, founder and CEO of Iraq and Afghanistan Veterans of America, told me.
“They came home and too often, you know, their therapy was drinking,” he said. “There was a generation of folks who had tremendous trauma and pain, and that overflowed into their families in ways that we still can’t even quantify.”
My grandfather was in the infamous Stalag Luft III prison camp, where “The Great Escape” took place. In his memoir, he writes about going to bed hungry, freezing and terrified of never knowing when the war would end.
“A prisoner of war experiences real-time feelings of helplessness and you’re on-your-own that cannot be imagined unless you have been there,” my grandpa relates in “Luck of the Draw.”
“It is difficult to put into words the sense of powerlessness and vulnerability one experiences when standing completely defenseless before a formidable armed wartime enemy of your country, knowing that the entire might of the United States is of no benefit to you.”
I have his book to remind me, but it’s hard to imagine what else he must have gone through, and the struggles he went through alone, once he was back home.
With so many US troops fighting abroad in Iraq and Afghanistan over the past 20 years, the problems my grandpa faced haven’t gone away.
About 16 veterans commit suicide each day in the United States, according to a report by the US Department of Veterans Affairs. Asked for comment by CNN, the VA did not specify how many of those suicides were related to post-traumatic stress.
I became active in the fight for our veterans when I joined the board of directors for the National Museum of the Mighty Eighth Air Force near Savannah, Georgia, in 2015 in honor of my grandfather’s service.
I found allies in the cause when I joined the board, including former Texas Gov. Rick Perry. Perry, who has been a vocal supporter of our nation’s veterans, was a pilot in the Air Force before entering politics and eventually becoming the US secretary of energy. His father, like my grandfather, served in the Eighth Air during WWII.
“My instinct here is warriors are very proud, and showing weakness in any form has historically been frowned upon,” he told me.
Perry’s attention to the emotional toll of war became heightened when he met Navy SEAL Marcus Luttrell. Luttrell had just returned home from a harrowing experience participating in Operation Red Wings in Afghanistan in 2005. (It went on to become a best-selling book and a 2013 film starring Mark Wahlberg called “Lone Survivor.”) Perry and his wife took Luttrell into their home and got him the psychological support he needed.
At same time, Perry was introduced to Amber and Marcus Capone, a couple who had started an organization called Veterans Exploring Treatment Solutions, or VETS, which provides resources, research and advocacy for US military veterans seeking treatment with psychedelic-assisted therapies.
They started the group after Marcus Capone returned home from multiple combat deployments in Iraq and Afghanistan and was having suicidal thoughts.
“He didn’t understand why he couldn’t get better,” Amber Capone said. “He was trying so hard. I just thought of our kids and them living the rest of their lives without a father and how this would impact generations to come, and I just thought, I can’t stop fighting for him.”
Six years later, VETS says it has provided funding for more than 700 veterans to get access to psychedelic treatments at centers outside the country due to issues with legalization.
This is one of the reasons Perry has devoted years to supporting veterans and bipartisan legislation for psychedelic therapy for veterans.
“I know this whole concept, Rick Perry’s name and psychedelics in the same sentence, five years ago I would’ve kind of looked at you and said, ‘What are you talking about?’ ” Perry told me. “But I know kids that were really sick that are now about as close to normal as you can get.”
The legalization of psychedelic treatments varies in the United States. Only a handful of states such as New York, California and Arizona have active legislation proposed to decriminalize plant-based hallucinogens, such as psilocybin, the active ingredient in “magic mushrooms,” and dimethyltryptamine, which is found in some plants used to brew ayahuasca.
While Oregon and Colorado are the only two US states to have decriminalized psychedelic mushrooms for those over 21, other states such as Texas and Maryland are conducting clinical trials with MDMA and ibogaine for those suffering from issues such as PTSD and depression.
Dr. David Rabin, a neuroscientist and board-certified psychiatrist, has been studying the effects of chronic stress on mental and physical health for nearly 20 years.
“We know that hugs feel good. We know that music makes us feel good if we like listening to our favorite songs, right? That is intuitive, but we don’t necessarily remember to breathe when we’re stressed out,” Rabin said.
“Psychedelic medicine is interesting because it works when it’s used properly,” he said. “It works as a therapy amplifier because it molecularly seems to do something in the brain that amplifies the neural pathways of safety that are set up by the therapeutic environment.”
Springer cofounded the Stella Center, a network of clinics that offer ketamine infusion therapy and dual sympathetic reset for those suffering from post-traumatic stress. Dual sympathetic reset is a procedure involving a local anesthetic injected next to a mass of sympathetic nerves in the neck called the stellate ganglion to help regulate an overactive sympathetic nervous system, according to Stella’s website.
“For some, it’s medication; for some, it’s a service dog,” said Rieckhoff of Iraq and Afghanistan Veterans of America. “And I think everybody’s got to figure out what their right prescription is to meet their unique situation.”
Another individual bringing resources to veterans and their families is ABC News journalist Bob Woodruff.
While reporting in the field in Iraq in 2006, Woodruff had a near-death experience that changed the course of his life. An improvised explosive device struck him and his cameraman, and Woodruff was subsequently kept in a medically induced coma for 36 months.
During his recovery, he and his wife, Lee Woodruff, were inspired to launch their nonprofit, the Bob Woodruff Foundation, after getting to know veterans who were dealing with the impact of hidden injuries such as traumatic brain injuries.
“I would say almost every American wants to do something for veterans who served, but many don’t really know exactly where that support should go because it’s very complicated,” Bob Woodruff said. “We just kind of help people who want to do something, find the right direction to help people.”
To date, the foundation says it’s invested over $124 million in these programs and has given over 585 grants to veterans and their families
As for the future, Perry said it’s about continuing the conversation.
“I think mental health is the most undiagnosed and unknown malady that we have in modern society, potentially,” he said. “It was there all along.”
by tyler | May 9, 2023 | CNN, health
US health officials may soon ask states to notify them of any cases of infants with serious infections caused by Cronobacter sakazakii, bacteria that can contaminate infant formula.
Cronobacter infections typically strike infants who are less than 2 months old, and they can be fatal or permanently disabling.
In an outbreak that the US Centers for Disease Control and Prevention investigated last year, four babies were sickened, including two who died. All the infants had been fed baby formula manufactured at the same factory in Sturgis, Michigan, triggering an extensive investigation by the US Food and Drug Administration and ultimately stopping production at the facility for months. The shutdown worsened ongoing supply chain issues and threw the country into a nationwide shortage.
Ultimately, the FDA and the CDC could find no genetic links between Cronobacter samples from the facility and the bacteria found in the water and powder used to mix the formula that the infants had consumed.
These infections are thought to be infrequent, but the true burden in the US is unknown because Cronobacter is not currently part of the National Notifiable Diseases Surveillance System, a list of about 120 illnesses given special priority by the CDC because they’ve been deemed to be important to public health.
The Council of State and Territorial Epidemiologists, a nonprofit organization that advocates for effective disease surveillance, identified Cronobacter as a priority area for investigation this year.
A work group was formed in the winter to assess conditions, risks and surveillance processes related to the bacterial infection, and it will present recommendations to advance Cronobacter surveillance in June.
Adding Cronobacter infections to the national watchlist is among the strategies being considered.
“When we look back at large-scale outbreaks over the course of the last year, many of those outbreaks were associated with diseases and conditions that were nationally notifiable, but not all of them,” said Janet Hamilton, executive director of the council – and Cronobacter was one of the exceptions.
“So whenever we have something like that, that prompts the council to determine and assess whether we need to potentially be doing more.”
Adding an illness to the national list can have a sizable impact. After E. coli O157 was added to the notifiable disease list in 1994 and most states required doctors to report cases by 2000, the number of reported outbreaks tripled.
However, it would take quite some time for any changes to take effect.
If the Council of State and Territorial Epidemiologists votes in favor of adding Cronobacter infections to the national list of notifiable diseases, the recommendation will go to the CDC for approval. If the CDC deems an illness to be notifiable, it’s up to state and local governments to adjust their reporting laws and develop processes for doctors to report cases to health departments, which then forward those reports to the CDC.
The soonest that data collection could start is the beginning of 2024, and it would most likely be well into the year, depending on state legislative sessions.
Currently, only two states, Minnesota and Michigan, require doctors to report Cronobacter cases, which may be diagnosed more generically as sepsis or meningitis, conditions that can result from an infection.
“Unless detailed studies are done, the diagnosis as a Cronobacter illness may be missed,” FDA Commissioner Dr. Robert Califf wrote in a blog post last week. “The lack of mandatory reporting significantly hampers the ability to fully understand Cronobacter’s public health impact.”
Dr. Peter Lurie, executive director of the Center for Science in the Public Interest, applauded the potential move.
“I think it’s a necessary step. It is difficult to prevent diseases that you can’t count,” Lurie said.
In addition, Lurie says, manufacturers should be required to notify the FDA when a batch of baby formula tests positive for Cronobacter before it leaves the plant. The FDA has asked manufacturers to tell it about positive tests, but such reporting is voluntary.
Lurie says the FDA should also be doing more sampling and testing for Cronobacter in the environment to get a better understanding of where the bacteria can turn up.
“I think we have a lot to learn there,” he said.
Mitzi Baum, CEO of the group Stop Foodborne Illness, which has been advocating for the change, said she was grateful the Council of State and Territorial Epidemiologists was moving toward a vote on it.
She said greater awareness of the infection was long overdue.
“It’s always prefaced by ‘this is rare,’ but we don’t know how rare it is because it’s not reportable. And there needs to be a lot more education about this pathogen and a lot more research,” Baum said.
Baum said her group is working with the council to create an education campaign to raise awareness of the infection among doctors. The next step, she says, is getting funding.
The council’s Hamilton points out that “simply making something nationally notifiable doesn’t necessarily translate into awareness and recognition on the prevention side. If people don’t have the right set of information and education, by the time we’re doing public health surveillance for it, the disease or infection has already occurred.”
According to the FDA, Cronobacter sakazakii is a common natural pathogen that can enter homes and other spaces on hands, shoes and other contaminated surfaces. It is “especially good at surviving in dry foods,” such as powdered baby formula.
Infections are harmless for most people, but it can be life-threatening for infants, especially those who are born prematurely or with weakened immune systems. It’s particularly important to be sure that parents of high-risk infants know how to keep them safe, Hamilton said.
“Providing good education around how to stop infections is really what leads to the level of change that we would love to see,” she said.
