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How confusion about textured hairstyles can prevent some patients from getting necessary medical imaging | CNN

KFF Health News
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Sadé Lewis of Queens, New York, has suffered migraines since she was a kid, and as she started college, they got worse. A recent change in her insurance left the 27-year-old looking for a new neurologist. That’s when she found West 14 Street MedicalArts in New York.

MedicalArts recommended that she get an electroencephalogram (EEG) and an MRI to make sure her brain was functioning properly.

An EEG is a test to measure the electrical activity of the brain. It can find changes in brain activity that can help in diagnosing conditions including epilepsy, sleep disorders, and brain tumors. During the procedure, electrodes consisting of small metal discs with attached wires are pasted onto the scalp using adhesive, or attached to an electrode cap that you wear on your head.

A little over a week before her EEG, Lewis was given instructions that she didn’t remember getting before a previous EEG appointment.

To Lewis’ surprise, patients were told to remove all hair extensions, braids, cornrows, wigs, etc. Also, she was to wash her hair with a mild shampoo the night before the appointment and not use any conditioners, hair creams, sprays, oils, or styling gels.

“The first thing I literally did was text it to my best friend, and I was, like, this is kind of anti-Black,” Lewis said. “I just feel like it creates a bunch of confusion, and it alienates patients who obviously need these procedures done.”

The restrictions could discourage people with thick, curly, and textured hair from going forward with their care. People with more permanent styles like locs — a hairstyle in which hair strands are coiled, braided, twisted, or palm-rolled to create a rope-like appearance — might be barred from getting the test done.

Kinky or curly hair textures are typically more delicate and susceptible to damage. As a result, people with curlier hair textures often wear protective hairstyles, such as weaves, braids, and twists, which help maintain hair length and health by keeping the ends of the hair tucked away and minimizing manipulation.

After receiving the instructions, Lewis scoured the internet and social media channels to see if she could find more information on best practices. But she noticed that for people with thick and textured hair, there were few tips on best hairstyles for an EEG.

Lewis has thick, curly hair and believed that explicitly following the instructions on the preparation worksheet would make it harder, not easier, for the technician to reach her scalp. Lewis decided that her mini-twists — a protective style in which the hair is parted into small sections and twisted — would be the best way for her to show up to the appointment with clean and product-free hair that still allowed for easy access to her scalp.

Lewis felt comfortable with her plan and did not think about it again until she received a reminder email the day before her EEG and MRI appointment that restated the restrictive instructions and added a warning: Failure to comply would result in the appointment being rescheduled and a $50 same-day cancellation fee.

To avoid the penalty, Lewis emailed the facility with her concerns and attached photos.

“I got kind of worried, and I sent them pictures of my hair thinking that it would go well, and they would be, like, ‘Oh yeah, that’s fine. We see what you see,’” said Lewis.

Soon after, she received a call from the facility and was told she would not be able to get the procedure done with her hair in the twists. After the call, Lewis posted a TikTok video detailing the conversation. She expressed her frustration and felt that the person on the phone was “close-minded.”

“As a Black woman, that is so exclusionary for coarse and thick hair. To literally have no product in your hair and show up with it loose, you’re not even reaching my scalp with that,” Lewis said in her video.

The comments section on Lewis’ TikTok video is full of people sharing in her frustration and confusion or recounting similar experiences with EEG scheduling.

West 14 Street MedicalArts declined to comment for this article.

The New York medical center is not the only facility with similar EEG prep instructions. The Neurology Center, which has several locations in the Washington, D.C., area, provides EEG pretest instructions for patients reading, “Please remove any hair extensions or additions. Do not use hair treatment products such as hair spray, conditioners, or hair dressing, nor should you fix your hair in tight braids or corn rows.”

Marc Hanna, the neurophysiology supervisor at the center’s White Oak location in Silver Spring, Maryland, has more than 30 years of experience performing EEGs. He oversees 10-12 EEG technicians at the facility.

Hanna said the hair rules are meant to help a technician get an accurate reading from the test. “The electrodes need to sit flat on the scalp, and they need to be in precise spots on the scalp that are equally apart from each other,” Hanna said.

For people with thick and curly hair, this can be a challenge.

A 2020 article from Science News detailed a study that measured how much coarse, curly hair could interfere with measuring brain signals. A good EEG signal is considered to have less than 50 kilo-Ohms of impedance, but the researchers found unbraided, curly hair with standard electrodes yielded 615 kilo-Ohms.

Researchers are working to better capture brain waves of people with naturally thick and curly hair. Joy Jackson, a biomedical engineering major at the University of Miami, developed a clip-like device that can help electrodes better adhere to the scalp.

Experimentation with different braiding patterns and flexible electrode clips shaped like dragonfly wings, designed to push under the braids, has had promising results. A study, published by bioRxiv, found this method resulted in a reading well within the range for a reliable EEG measurement.

But more research has to be done before products like these are widely used by medical facilities.

Hanna said the facility where he works does not automatically ask patients to remove their protective styles because sometimes the technician can complete the test without them doing so.

“Each one of those cases are an individual case,” Hanna said. “So, at our facility, we don’t ask the patient to take all their braids out. We just ask them to come in. Sometimes, if one of the technicians are available when the patient is scheduling, they’ll just look at the hair and say, ‘OK, we can do it’ or ‘We don’t think we can do it.’ And we even might say, ‘We don’t think we can do it but come in and we’ll try.’”

In practice, Hanna said, it’s not common for hair to be an issue. But for patients whose hairstyle might make the test inaccurate, he said, it becomes a conversation between the doctor and the patient.

When Lewis arrived the following day for her MRI and EEG appointment, she was told her EEG had been canceled.

“It was just kind of baffling a little bit because, literally, as soon as I walk in, I saw about four different Black women who all had either twists, locs, braids, or something,” she said. “And on the call, the woman was saying if you come in and my hair is not loose, we’re going to charge you. And she did recommend to cancel my appointment. But I never approved that.”

After Lewis explained what happened during the phone call, she said, the receptionist was very apologetic and said the information Lewis was given was not true. Lewis said she spoke with one of the EEG technicians at the facility to confirm that her mini-twists would work for the test — and felt a sigh of relief when she saw the technician was also a Black woman.

“The technician, I think overall, they just made me feel safe,” Lewis said. “Because I felt like they could identify with me just from a cultural standpoint, a racial standpoint. So, it did make me feel a little bit more valid in my feelings.”

Lewis later returned to the facility to get the procedure done while still wearing mini-twists. This time, the process was seamless.

Her advice for other patients? “When you feel something, definitely speak out, ask questions.”

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Breast density changes over time could be linked to breast cancer risk, study finds | CNN

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CNN
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Breast density is known to naturally decrease as a woman ages, and now a study suggests that the more time it takes for breast density to decline, the more likely it is that the woman could develop breast cancer.

Researchers have long known that women with dense breasts have a higher risk of breast cancer. But according to the study, published last week in the journal JAMA Oncology, the rate of breast density changes over time also appears to be associated with the risk of cancer being diagnosed in that breast.

“We know that invasive breast cancer is rarely diagnosed simultaneously in both breasts, thus it is not a surprise that we have observed a much slower decline in the breast that eventually developed breast cancer compared to the natural decline in density with age,” Shu Jiang, an associate professor of surgery at Washington University School of Medicine in St. Louis and first author of the new study, wrote in an email.

Breast density refers to the amount of fibrous and glandular tissue in a person’s breasts compared with the amount of fatty tissue in the breasts – and breast density can be seen on a mammogram.

“Because women have their mammograms taken annually or biennially, the change of breast density over time is naturally available,” Jiang said in the email. “We should make full use of this dynamic information to better inform risk stratification and guide more individualized screening and prevention approaches.”

The researchers, from Washington University School of Medicine in St. Louis and Brigham and Women’s Hospital in Boston, analyzed health data over the course of 10 years among 947 women in the St. Louis region who completed routine mammograms. A mammogram is an X-ray picture of the breast that doctors use to look for early signs of breast cancer.

The women in the study were recruited from November 2008 to April 2012, and they had gotten mammograms through October 2020. The average age of the participants was around 57.

Among the women, there were 289 cases of breast cancer diagnosed, and the researchers found that breast density was higher at the start of the study for the women who later developed breast cancer compared with those who remained cancer-free.

The researchers also found that there was a significant decrease in breast density among all the women over the course of 10 years, regardless of whether they later developed breast cancer, but the rate of density decreasing over time was significantly slower among breasts in which cancer was later diagnosed.

“This study found that evaluating longitudinal changes in breast density from digital mammograms may offer an additional tool for assessing risk of breast cancer and subsequent risk reduction strategies,” the researchers wrote.

Not only is breast density a known risk factor for breast cancer, dense breast tissue can make mammograms more difficult to read.

“There are two issues here. First, breast density can make it more difficult to fully ‘see through’ the breast on a mammogram, like looking through a frosted glass. Thus, it can be harder to detect a breast cancer,” Dr. Hal Burstein, clinical investigator in the Breast Oncology Center at Dana-Farber Cancer Institute, who was not involved in the new study, said in an email. “Secondly, breast density is often thought to reflect the estrogen exposure or estrogen levels in women, and the greater the estrogen exposure, the greater the risk of developing breast cancer.”

In March, the US Food and Drug Administration published updates to its mammography regulations, requiring mammography facilities to notify patients about the density of their breasts.

“Breast density can have a masking effect on mammography, where it can be more difficult to find a breast cancer within an area of dense breast tissue,” Jiang wrote in her email.

“Even when you take away the issue of finding it, breast density is an independent risk factor for developing breast cancer. Although there is lots of data that tell us dense breast tissue is a risk factor, the reason for this is not clear,” she said. “It may be that development of dense tissue and cancer are related to the same biological processes or hormonal influences.”

The findings of the new study demonstrate that breast density serves as a risk factor for breast cancer – but women should be aware of their other risk factors too, said Dr. Maxine Jochelson, chief of the breast imaging service at Memorial Sloan Kettering Cancer Center in New York, who was not involved in the study.

“It makes sense to some extent that the longer your breast stays dense, theoretically, the more likely it is to develop cancer. And so basically, it expands on the data that dense breasts are a risk,” Jochelson said, adding that women with dense breasts should ask for supplemental imaging when they get mammograms.

But other factors that can raise the risk of breast cancer include having a family history of cancer, drinking too much alcohol, having a high-risk lesion biopsied from the breast or having a certain genetic mutation.

For instance, women should know that “density may not affect their risk so much if they have the breast cancer BRCA 1 or 2 mutation because their risk is so high that it may not make it much higher,” Jochelson said.

Some ways to reduce the risk of breast cancer include keeping a healthy weight, being physically active, drinking alcohol in moderation or not at all and, for some people, taking medications such as tamoxifen and breastfeeding your children, if possible.

“Breast density is a modest risk factor. The ‘average’ woman in the US has a 1 in 8 lifetime chance of developing breast cancer. Women with dense breasts have a slightly greater risk, about 1 in 6, or 1 in 7. So the lifetime risk goes up from 12% to 15%. That still means that most women with dense breasts will not develop breast cancer,” Burstein said in his email.

“Sometimes radiologists will recommend additional breast imaging to women with dense breast tissue on mammograms,” he added.

The US Preventive Services Task Force – a group of independent medical experts whose recommendations help guide doctors’ decisions – recommends biennial screening for women starting at age 50. The task force says that a decision to start screening earlier “should be an individual one.” Many medical groups, including the American Cancer Society and Mayo Clinic, emphasize that women have the option to start screening with a mammogram every year starting at age 40.

“It’s also very clear that breast density tends to be highest in younger women, premenopausal women, and for almost all women, it tends to go down with age. However, the risk of breast cancer goes up with age. So these two things are a little bit at odds with each other,” said Dr. Freya Schnabel, director of breast surgery at NYU Langone’s Perlmutter Cancer Center and professor of surgery at NYU Grossman School of Medicine in New York, who was not involved in the new study.

“So if you’re a 40-year-old woman and your breasts are dense, you could think about that as just being really kind of age-appropriate,” she said. “The take-home message that’s very, very practical and pragmatic right now is that if you have dense breasts, whatever your age is, even if you’re postmenopausal – maybe even specifically, if you are postmenopausal – and your breasts are not getting less dense the way the average woman’s does, that it really is a reason to seek out adjunctive imaging in addition to just mammography, to use additional diagnostic tools, like ultrasound or maybe even MRI, if there are other risk factors.”

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New study suggests Black women should be screened earlier for breast cancer | CNN

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CNN
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A new study on breast cancer deaths raises questions around whether Black women should screen at earlier ages.

An international team of researchers wrote in the study, published Wednesday in the journal JAMA Network Open, that clinical trials may be warranted to investigate whether screening guidelines should recommend Black women start screening at younger ages, around 42 instead of 50.

The US Preventive Services Task Force – a group of independent medical experts whose recommendations help guide doctors’ decisions – recommends biennial screening for women starting at age 50. The Task Force says that a decision to start screening prior to 50 “should be an individual one.” Many medical groups, including the American Cancer Society and Mayo Clinic, already emphasize that women have the option to start screening with a mammogram every year starting at age 40.

Even though Black women have a 4% lower incidence rate of breast cancer than White women, they have a 40% higher breast cancer death rate.

“The take-home message for US clinicians and health policy makers is simple. Clinicians and radiologists should consider race and ethnicity when determining the age at which breast cancer screening should begin,” Dr. Mahdi Fallah, an author of the new study and leader of Risk Adapted Cancer Prevention Group at the German Cancer Research Center in Heidelberg, Germany, said in an email.

“Also, health policy makers can consider a risk-adapted approach to breast cancer screening to address racial disparities in breast cancer mortality, especially the mortality before the recommended age of population screening,” said Fallah, who is also a visiting professor at Lund University in Sweden and an adjunct professor at the University of Bern in Switzerland.

Breast cancer screenings are typically performed using a mammogram, which is an X-ray picture taken of the breast that doctors examine to look for early signs of breast cancer developing.

“Guidelines for screening actually already do recommend basing a woman’s time to initiate screening on the risk of developing cancer, though race and ethnicity have not been traditional factors that go into these decisions,” Dr. Rachel Freedman, a breast oncologist at Dana-Farber Cancer Institute, who was not involved in the new study, said in an email.

The American Cancer Society currently recommends that all women consider mammogram screenings for breast cancer risk starting at the age of 40 – and for women 45 to 54, it’s recommended to get mammograms every year. Those 55 and older can switch to screening every other year if they choose.

But “we are in the process of updating our breast cancer screening guidelines, and we are examining the scientific literature for how screening guidelines could differ for women in different racial and ethnic groups, and by other risk factors, in a way that would reduce disparities based on risk and disparities in outcome,” Robert Smith, senior vice president for cancer screening at the American Cancer Society, who was not involved in the new study, said in an email. “We are examining these issues closely.”

The American Cancer Society’s recommendations appear to align with the findings in the new study, as the research highlights how screening guidelines should not be a “one-size-fits-all policy,” but rather help guide conversations that patients and their doctors have together.

“We, here at the American Cancer Society, strongly recommend that all women consider a screening mammogram from the age of 40 onwards, and that means having a discussion with their doctor,” said Dr. Arif Kamal, the American Cancer Society’s chief patient officer, who was not involved in the new study.

“The authors highlight that age 50 can be a little late,” Kamal said about the study’s findings on when to begin breast cancer screening. “We are in agreement with that, particularly for women who may be at slightly higher risk.”

The researchers – from China, Germany, Sweden, Switzerland and Norway – analyzed data on 415,277 women in the United States who died of breast cancer in 2011 to 2020. That data on invasive breast cancer mortality rates came from the National Center for Health Statistics and was analyzed with the National Cancer Institute’s SEER statistical software.

When the researchers examined the data by race, ethnicity and age, they found that the rate of breast cancer deaths among women in their 40s was 27 deaths per 100,000 person-years for Black women compared with 15 deaths per 100,000 in White women and 11 deaths per 100,000 in American Indian, Alaska Native, Hispanic and Asian or Pacific Islander women.

“When the breast cancer mortality rate for Black women in their 40s is 27 deaths per 100,000 person-years, this means 27 out of every 100,000 Black women aged 40-49 in the US die of breast cancer during one year of follow-up. In other words, 0.027% of Black women aged 40-49 die of breast cancer each year,” Fallah said in the email.

In general, for women in the United States, their average risk of dying from breast cancer in the decade after they turn 50, from age 50 to 59, is 0.329%, according to the study.

“However, this risk level is reached at different ages for women from different racial/ethnic groups,” Fallah said. “Black women tend to reach this risk level of 0.329% earlier, at age 42. White women tend to reach it at age 51, American Indian or Alaska Native and Hispanic women at age 57 years, and Asian or Pacific Islander women later, at age 61.”

So, the researchers determined that when recommending breast cancer screening at age 50 for women, Black women should start at age 42.

Yet “the authors didn’t have any information on whether the women included in this study actually had mammographic screening and at what age. For example, it is possible that many women in this study actually had screening during ages 40-49,” Freedman, of the Dana-Farber Cancer Institute, said in her email.

“This study confirms that the age of breast cancer-mortality is younger for Black women, but it doesn’t confirm why and if screening is even the main reason. We have no information about the types of cancers women developed and what treatment they had either, both of which impact mortality from breast cancer,” she said.

The harm of starting mammograms at a younger age is that it raises the risk of a false positive screening result – leading to unnecessary subsequent tests and emotional stress.

But the researchers wrote in their study that “the added risk of false positives from earlier screenings may be balanced by the benefits” linked with earlier breast cancer detection.

They also wrote that health policy makers should pursue equity, not just equality, when it comes to breast cancer screening as a tool to help reduce breast cancer death rates.

Equality in the context of breast cancer screening “means that everyone is screened from the same age regardless of risk level. On the other hand, equity or risk-adapted screening means that everyone is provided screening according to their individual risk level,” the researchers wrote. “We believe that a fair and risk-adapted screening program may also be associated with optimized resource allocation.”

The new study is “timely and relevant,” given the overall higher mortality rate for breast cancer in Black women and that Black women are more likely to be diagnosed at a younger age compared with other ethnic groups, Dr. Kathie-Ann Joseph, surgical oncologist at NYU Langone’s Perlmutter Cancer Center and professor of surgery and population health at the NYU Grossman School of Medicine, said in an email.

“While some may argue that earlier screening may lead to increased recalls and unnecessary biopsies, women get recalled for additional imaging about 10% of the time and biopsies are needed in 1-2% of cases, which is quite low,” said Joseph, who was not involved in the new study.

“This has to be compared to the lives saved from earlier screening mammography,” she said. “I would also like to point out that while we certainly want to prevent deaths, earlier screening can have other benefits by allowing women of all racial and ethnic groups to have less extensive surgery and less chemotherapy which impacts quality of life.”

Breast cancer is the most common cancer among women in the United States, except for skin cancers. This year, it is estimated that about 43,700 women will die from the disease, according to the American Cancer Society, and Black women have the highest death rate from breast cancer.

Even though Black women are 40% more likely than White women to die from the disease, Kamal of the American Cancer Society said that the disparity in deaths is not a result of Black women not following the current mammogram guidelines.

Rather, implicit bias in medicine plays a role.

“In the United States, across the country, there are not differences in mammogram screening rates among Black women and White women. In fact, across the entire country, the number is about 75%. We see about 3 in 4 women – Black, White, Hispanic, and Asian – are on time with their mammograms,” Kamal said.

Yet there are multiple timepoints after a patient is diagnosed with breast cancer where they may not receive the same quality of care or access to care as their peers.

“For example, Black women are less likely to be offered enrollment in a clinical trial. That is not because of a stated difference in interest. In fact, the enrollment rate in clinical trials is equal among Black women and White women, if they’re asked,” Kamal said.

“What we have to understand is where the implicit and systemic biases held by patients and their caregivers and their families may exist – those that are held within health systems and even policies and practices that impede everyone having fair and just access to high quality health care,” he said.

Additionally, Black women have nearly a three-fold increased risk of triple-negative breast cancers. Those particular type of cancers tend to be more common in women younger than 40, grow faster than other types of invasive breast cancer and have fewer treatment options.

Black women also tend to have denser breast tissue than White women. Having dense tissue in the breast can make it more difficult for radiologists to identify breast cancer on a mammogram, and women with dense breast tissue have a higher risk of breast cancer.

But such biological differences among women represent just a small part of a much larger discussion around racial disparities in breast cancer, Kamal said.

“There are systemic issues, access to care issues that really go beyond biology,” he said. “The reality is cancer affects everybody and it does not discriminate. Where the discrimination sometimes occurs is after the diagnosis, and that’s really what we need to focus on.”

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Colorectal cancer is rising among younger adults and scientists are racing to uncover why | CNN

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CNN
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Nikki Lawson received the shock of her life at age 35.

A couple of years ago, she noticed that her stomach often felt irritable, and she would get sudden urges to use the restroom, sometimes with blood in her stool. She even went to the hospital one day when her symptoms were severe, she said, and she was told it might be a stomach ulcer before being sent home.

“That was around the time when Chadwick Boseman, the actor, passed away. I remember watching him on the news and having the same symptoms,” Lawson said of the “Black Panther” star who died of colon cancer at age 43 in August 2020.

“But at that time, I was not thinking ‘this is something that I’m going through,’ ” she said.

Instead, Lawson thought changing her diet would help. She stopped eating certain red meats and ate more fruits and vegetables. She began losing a lot of weight, which she thought was the result of her new diet.

“But then I went for a physical,” Lawson said.

Her primary care physician recommended that she see a gastroenterologist immediately because she had low iron levels.

“When I went and I saw my gastro, she said, ‘I’m sorry, I have bad news. We see something. We sent it off to get testing. It looks like it is cancer.’ My whole world just kind of blanked out,” Lawson said. “I was 35, healthy, going about my day, raising my daughter, and to get a diagnosis like this, I was just so shocked.”

Lawson, who was diagnosed with stage III rectal cancer, is among a growing group of colon and rectal cancer patients in the United States who are diagnosed at a young age.

The share of colorectal cancer diagnoses among adults younger than 55 in the US has been rising since the 1990s, and no one knows why.

Researchers at Dana-Farber Cancer Institute are calling for more work to be done to understand, prevent and treat colorectal cancer at younger ages.

In a paper published last week in the journal Science, the researchers, Dr. Marios Giannakis and Dr. Kimmie Ng, outlined a way for scientists to accelerate their investigations into the puzzling rise of colorectal cancer among younger ages, calling for more specialized research centers to focus on younger patients with the disease and for diverse populations to be included in studies on early-onset colorectal cancer.

Their hope is that this work will help improve outcomes for young colorectal cancer patients like Lawson.

Among younger adults, ages 20 to 49, colorectal cancer is estimated to become the leading cause of cancer-related deaths in the United States by 2030.

Lawson, now 36 and living in Palm Bay, Florida, with her 5-year-old daughter, is in remission and cancer-free.

The former middle school teacher had several surgeries and received radiation therapy and chemotherapy to treat her cancer. She is now being monitored closely by her doctors.

For other young people with colorectal cancer, “my words of hope would be to just stay strong. Just find that courage within yourself to say, ‘You know what, I’m going to fight this.’ And I just looked within myself,” Lawson said.

“I also have a very supportive family system, so they were definitely there for me. But it was very emotional,” she said of her cancer treatments.

“I remember crying through chemotherapy sessions and the medicine making you so weak, and my daughter was 4, and having to be strong for her,” she said. “My advice to any young person: If you see symptoms or you see something’s not right and you’re losing a lot of weight and not really trying to, go to see a doctor.”

Signs and symptoms of colorectal cancer include changes in bowel habits, rectal bleeding or blood in the stool, cramping or abdominal pain, weakness and fatigue, and weight loss.

A report released this month by the American Cancer Society shows that the proportion of colorectal cancer cases among adults younger than 55 increased from 11% in 1995 to 20% in 2019. Yet the factors driving that rise remain a mystery.

There’s probably more than just one cause, said Lawson’s surgeon, Dr. Steven Lee-Kong, chief of colorectal surgery at Hackensack University Medical Center in New Jersey.

He has noticed an increase in colorectal cancer patients in their 40s and 30s within his own practice. His youngest patient was 21 when she was diagnosed with rectal cancer.

“There is a phenomenon of decreasing overall colorectal cancer rates in the population in general, we think because of the increase in screening for particularly for older adults,” Lee-Kong said. “But that doesn’t really account for the overall increase in the number of patients younger than, say, 50 and 45 that are developing cancer.”

Some of the factors known to raise anyone’s risk of colorectal cancer are having a family history of the disease, having a certain genetic mutation, drinking too much alcohol, smoking cigarettes or being obese.

“They were established as risk factors in older cohorts of patients, but they do seem to be also associated with early-onset disease, and those are things like excess body weight, lack of physical activity, high consumption of processed meat and red meat, very high alcohol consumption,” said Rebecca Siegel, a cancer epidemiologist and senior scientific director of surveillance research at the American Cancer Society, who was lead author of this month’s report.

“But the data don’t support these specific factors as solely driving the trend,” she said. “So if you have excess body weight, you are at a higher risk of colorectal cancer in your 40s than someone who is average weight. That is true. But the excess risk is pretty small. So again, that is probably not what’s driving this increase, and it’s another reason to think that there’s something else going on.”

Many people who are being diagnosed at a younger age were not obese, including some high-profile cases, such as Broadway actor Quentin Oliver Lee, who died last year at 34 after being diagnosed with stage IV colon cancer.

“Anecdotally, in conferences that I’ve attended, that is the word on the street: that most of these patients are very healthy. They’re not obese; they’re very active,” Siegel said, which adds to the mystery.

“We know that excess weight increases your risk, and we know that we’ve had a big increase in body weight in this country,” she said. “And that is contributing to more cancer for a lot of cancers and also for colorectal cancer. But does it explain this trend that we’re seeing, this steep increase? No, it doesn’t.”

Yet scientists remain divided when it comes to just how much of a role those known risk factors – especially obesity – play in the rise of colorectal cancer among adults younger than 55.

Even though the cause of the rise of colorectal cancer in younger adults is “still not very well understood,” Dr. Subhankar Chakraborty argues that dietary and lifestyle factors could be playing larger roles than some would think.

“We know that smoking, alcohol, lack of physical activity, being overweight or obese, increased consumption of red meat – so basically, dietary factors and environmental and lifestyle factors – are likely playing a big role,” said Chakraborty, a gastroenterologist with The Ohio State University Comprehensive Cancer Center.

“There are also some other factors, such as the growing incidence of inflammatory bowel disease, that may also be playing a role, and I think the biggest factors is most likely the diet, the lifestyle and the environmental factors,” he said.

It has been difficult to pinpoint causes of the rise of cases in younger ages because, if someone has a polyp in their colon for example, it can take 10 to 15 years to develop into cancer, he says.

“During that, all the way from a polyp to the cancer stage, the person is exposed to a variety of things in their life. And to really pinpoint what is going on, we would need to follow specific individuals over time to really understand their dietary patterns, medications and weight changes,” Chakraborty said. “So that makes it really hard, because of the time that cancer actually takes to develop.”

Some researchers have been investigating ways in which the rise in colorectal cancer among younger adults may be connected to increases in childhood obesity in the US.

“The rise in young-onset colorectal cancer correlates with a doubling of the prevalence of childhood obesity over the last 30 years, now affecting 20% of those under age 20,” Dr. William Karnes, a gastroenterologist and director of high-risk colorectal cancer services at the UCI Health Digestive Health Institute in California, said in an email.

“However, other factors may exist,” he said, adding that he has noticed “an increasing frequency of being shocked” by discoveries of colorectal cancer in his younger patients.

There could be correlations between obesity in younger adults, the foods they eat and the increase in colorectal cancers for the young adult population, said Dr. Shane Dormady, a medical oncologist from El Camino Health in California who treats colorectal cancer patients.

“I think younger people are on average consuming less healthy food – fast food, processed snacks, processed sugars – and I think that those foods also contain higher concentrations of carcinogens and mutagens, in addition to the fact that they are very fattening,” Dormady said.

“It’s well-publicized that child, adolescent, young adult obesity is rampant, if not epidemic, in our country,” he said. “And whenever a person is at an unhealthy weight, especially at a young age, which is when the cells are most susceptible to DNA damage, it really starts the ball rolling in the wrong direction.”

Yet at the Center for Young Onset Colorectal and Gastrointestinal Cancers at Memorial Sloan Kettering Cancer Center, researchers and physicians are not seeing a definite correlation between the rise in colorectal cancer among their younger adult patients and a rise in obesity, according to Dr. Robin Mendelsohn, gastroenterologist and co-director of the center, where scientists and doctors continue to work around the clock to solve this mystery.

“When we looked at our patients, the majority were more likely to be overweight and obese, but when we compare them to a national cohort without cancer, they’re actually less likely to be overweight and obese,” she said. “And anecdotally, a lot of the patients that we see are young and fit and don’t really fit the obesity profile.”

That leaves many oncologists scratching their heads.

Some scientists are also exploring whether genetic mutations that can raise someone’s risk for colorectal cancer have played a role in the rise of cases among younger adults – but the majority of these patients do not have them.

Karnes, of UCI Health, said “it is unlikely” that there has been an increase in the genetic mutations that raise the risk of colorectal cancer, “although, as expected, the percentage of colorectal cancers caused by such mutations, e.g., Lynch syndrome, is more common in people with young-onset colorectal cancer.”

Lynch syndrome is the most common cause of hereditary colorectal cancer, causing about 4,200 cases in the US per year. People with Lynch syndrome are more likely to get cancers at a younger age, before 50.

“In my practice and in the medical community, the oncologic community, I don’t think there’s any proof that genetic syndromes and gene mutations that patients are born with are becoming more frequent,” El Camino Health’s Dormady said. “I don’t think the inherent frequency of those mutations is going up.”

The tumors of younger colorectal cancer patients are very similar to those of older ones, said Mendelsohn at Memorial Sloan Kettering Cancer Center.

“So then, the question is, if they’re biologically the same, why are we seeing this increasingly in younger people?” she said. “About 20% may have a genetic mutation, so the majority of patients do not have a family history or genetic predisposition.”

Therefore, Mendelsohn added, “it’s likely some kind of exposure, whether it be diet, medication, changing microbiome,” that is driving the rise in colorectal cancers in younger adults.

That rise “has been something that’s been on our radar, and it has been increasing since the 1990s,” Mendelsohn said. “And even though it is increasing, the numbers are still small. So it’s still a small population.”

Dormady, at El Camino Health, said he now sees more colorectal cancer patients in their early to mid-50s than he did 20 years ago, and he wonders whether it might be a result of colorectal cancer screening being easier to access and better at detecting cancers.

“The first thing to consider is that some of our diagnostic modalities are becoming better,” he said, especially because there are now many at-home colorectal cancer testing kits. Also, in 2021, the US Preventive Services Task Force lowered the recommended age to start screening for colon and rectal cancers from 50 to 45.

“I think you have a subset of patients who are being screened earlier with colonoscopies; you have advancing technology where we can potentially detect tumor cell DNA in the stool sample, which is leading to earlier diagnosis. And sometimes that effect will skew statistics and make it look like the incidence is really on the rise, but deeper analysis shows you that part of that is due to earlier detection and more screening,” he said. “So that could be one facet of the equation.”

Overall, pinpointing what could be driving this surge in colorectal cancer diagnoses among younger ages will not only help scientists better understand cancer as a disease, it will help doctors develop personalized risk assessments for their younger patients, Ohio State University’s Chakraborty said.

“Because most of the people who go on to develop colorectal cancer really have no family history – no known family history of colon cancer – so they would really not be aware of their risk until they begin to develop symptoms,” he said.

“Having a personalized risk assessment tool that will take into account their lifestyle, their environmental factors, genetic factors – I think if we have that, then it would allow us hopefully, in the future, to provide some personalized recommendations on when a person should be screened for colorectal cancer and what should be the modality of screening based on their risk,” he said. “Younger adults tend to develop colon cancer mostly in the left side, whereas, as we get older, colon cancer tends to develop more on the right side. So there’s a little difference in how we could screen younger adults versus older adults.”

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100,000 newborn babies will have their genomes sequenced in the UK. It could have big implications for child medicine | CNN

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CNN
—

The UK is set to begin sequencing the genomes of 100,000 newborn babies later this year. It will be the largest study of its kind, mapping the babies’ complete set of genetic instructions, with potentially profound implications for child medicine.

The £105 million ($126 million) Newborn Genomes Programme will screen for around 200 rare but treatable genetic conditions, with the aim of curtailing untold pain and anxiety for babies and their families, who sometimes struggle to receive a diagnosis through conventional testing. By accelerating the diagnostic process, earlier treatment of infants could prevent many severe conditions from ever developing.

The study would see roughly one in 12 newborn babies in England screened on a voluntary basis over two years. It will operate as an extension of current newborn testing, with the findings intended to inform policymakers, who could pave the way for sequencing to become more commonplace.

Nevertheless, the project has raised many longstanding ethical questions around genetics, consent, data privacy, and priorities within infant healthcare.

The health game-changers of the last 500 years

In the UK, like many other countries, newborn babies are screened for a number of treatable conditions through a small blood spot sample. Also known as the heel prick test, this method has been routine for over 50 years, and today covers nine conditions including sickle cell disease, cystic fibrosis and inherited metabolic diseases.

“The heel prick is long overdue to be obsolete,” argues Eric Topol, an American cardiologist and professor of molecular medicine at The Scripps Research Institute, who is not connected with the UK sequencing initiative. “It’s very limited and it takes weeks to get the answer. Sometimes, babies that have serious metabolic abnormalities, they’re already being harmed.”

Some conditions that are tested for have variations that may not register a positive result. The consequences can be life-altering.

One example is congenital hyperthyroidism, which impacts neurological development and growth and affects “one in 1,500 to 2,000 babies in the UK,” explains Krishna Chatterjee, professor of endocrinology at the University of Cambridge. It is the result of an absent or under-developed thyroid gland and can be treated with the hormone thyroxine, a cheap and routine medicine. But if treatment doesn’t begin “within the first six months of life, some of those deleterious neurodevelopmental consequences cannot be prevented or reversed.”

The Newborn Genomes Programme will test for one or more forms of congenital hypothyroidism that are not picked up by the heel prick test. “At a stroke, you can make a diagnosis, and that can be game changing – or life changing – for that child,” Chatterjee says.

The program is led by Genomics England, part of the UK Department of Health and Social Care. Along with its partners, it has carried out a variety of preparatory studies, including a large-scale public consultation. A feasibility study is currently underway to assess whether a heel prick, cheek swab or umbilical cord blood will be used for sampling, with the quality of the DNA sample determining the final choice.

Genomics England says that each of the 200 conditions that will be screened for has been selected because there is evidence it is caused by genetic variants; it has a debilitating effect; early or pre-symptomatic treatment has a life-improving impact; and treatment is available for all through the UK’s National Health Service (NHS).

Richard Scott, chief medical officer and deputy CEO at Genomics England, says the program aims to return screening results to families in two weeks, and estimates at least one in 200 babies will receive a diagnosis.

Contracts for sequencing are still to be confirmed, although one contender is American biotech company Illumina. Chief scientist David Bentley says the company has reduced the price of its sequencing 1,000-fold compared to its first genome 15 years ago, and can now sequence the whole human genome for $200.

Bentley argues that early diagnosis via genome sequencing is cost effective in the long term: “People get sick, they get tested using one test after another, and that cost mounts up. (Sequencing) the genome is much cheaper than a diagnostic odyssey.”

Illumina equipment in a sequencing laboratory. The cost of sequencing the human genome has fallen significantly in the last 15 years, says the company.

But while some barriers to genetic screening have fallen, many societal factors are still in play.

Feedback from a public consultation ahead of the UK project’s launch was generally positive, although some participants voiced concerns that religious views could affect uptake, and a few expressed skepticism and mistrust about current scientific developments in healthcare, according to a report on its findings.

Frances Flinter, emeritus professor of clinical genetics and Guy’s and St Thomas’ NHS Foundation Trust and a member of the Nuffield Council on Bioethics, described the program as a “step into the unknown” in a statement to Science Media Centre in December 2022, reacting to the launch of the program.

“We must not race to use this technology before both the science and ethics are ready,” she said at the time. “This research program could provide new and important evidence on both. We just hope the question of whether we should be doing this at all is still open.”

Genome sequencing has raised many philosophical and ethical questions. If you could have aspects of your medical future laid ahead of you, would you want that? What if you were predisposed to an incurable disease? Could that knowledge alone impact your quality of life?

“People don’t generally understand deterministic or fatalistic-type results versus probabilistic, so it does require real teaching of participants,” says Topol. In other words, just because someone has a genetic predisposition to a certain condition, it doesn’t guarantee that they will develop the disease.

Nevertheless, sequencing newborn babies has made some of those questions more acute.

“One of the tenets of genomics and genomics testing is the importance of maintaining people’s autonomy to make their own decisions,” says Scott, highlighting the optional nature of the program.

“We’ve been quite cautious,” he stresses. “All of the conditions that we’re looking for are ones where we think we can make a really substantial impact on those children’s lives.”

Parents-to-be will be invited to participate in the program at their 20-week scan, and confirm their decision after the child’s birth.

“These will be parents, most of whom won’t have any history of a genetic condition, or any reason to worry about one. So it will be an additional challenge for them to appreciate what the value might be for their family,” says Amanda Pichini, clinical lead for genetic counseling at Genomics England.

Part of Pichini’s remit is to ensure equal access to the program and to produce representative data. While diversity comes in many forms, she says – including economic background and rural versus urban location – enlisting ethnically diverse participants is one objective.

“(There) has been a lack of data from other ethnic groups around the world, compared to Caucasians,” says Bentley. “As a result, the diagnostic rates for people from those backgrounds is lower. There are more variants from those backgrounds that we don’t know anything about – we can’t interpret them.”

If genomics is to serve humanity equally, genome data needs to reflect all of it. Data diversity “isn’t an issue that any one country can solve,” says Pichini.

Other countries are also pursuing sequencing programs and reference genomes – a set of genes assembled by scientists to represent a population, for the purpose of comparison. Australia is investing over $500 million AUS (around $333 million) into its genome program; the “All of Us” program is engaged in a five-year mission to sequence 1 million genomes in the US; and in the Middle East, the United Arab Emirates is seeking its own reference genome to investigate genetic diseases disproportionately affecting people in the region, where Illumina’s recently opened Dubai office will add local sequencing capacity.

Richard Scott of Genomics England says he hopes findings from the UK will be useful to other countries’ health systems, especially those not in “a strong position to develop the evidence and to support their decisions as well.”

Sequenced genomes will enter a secure databank using the same model as the National Genomic Research Library, in which they are deidentified and assigned a reference number.

Researchers from the NHS, universities and pharmaceutical companies can apply for access to the National Genomic Research Library (in some cases for a fee), with applications approved by an independent committee that includes participants who have provided samples. There are plenty of restrictions: data cannot be accessed for insurance or marketing purposes, for example.

“We think it’s really important to be transparent about that,” says Pichini. “Often, drugs and diagnostics and therapeutics can’t be developed in the NHS on (its) own. We need to have those partnerships.”

When each child turns 16, they will make their own decision on whether their genomic data should remain in the system. It hasn’t yet been decided if participants can request further investigation of their genome – beyond the scope of newborn screening – at a later date, says Scott.

After the two-year sampling window closes, a cost-benefit analysis of the program will begin, developing evidence for the UK National Screening Committee which advises the government and NHS on screening policies. It’s a process that could take some time.

Chatterjee suggests an entire lifetime might be needed to measure the economic savings that would come from early diagnosis of certain diseases, citing the costs of special needs schooling for children and support for adults living with certain rare genetic conditions: “How does that balance against the technical cost of making a diagnosis and then treatment?”

“I’m quite certain that this cost-benefit equation will balance,” Chatterjee adds.

Multiple interviewees for this article viewed genome sequencing as an extension of current testing, though stopped short of suggesting it could become standard practice for all newborn babies. Even Topol, a staunch advocate for genomics, does not believe it will become universal. “I don’t think you can mandate something like this,” he says. “We’re going to have an anti-genomic community, let’s face it.”

Members of the medical community have expressed a variety of concerns about the program’s approach and scope.

In comments released last December, Angus Clarke, clinical professor at the Institute of Cancer and Genetics at Cardiff University, queried if the program’s whole genome sequencing was driven by a wish to collect more genomic data, rather than improve newborn screening. Louise Fish, chief executive of the Genetic Alliance UK charity, questioned whether following other European nations that are expanding the number of conditions tested through existing bloodspot screening may have “just as great an ability to improve the lives of babies and their families.”

If genome sequencing becomes the norm, it remains to be seen how it will dovetail with precision medicine in the form of gene therapy, including gene editing. While the cost of sequencing a genome has plummeted, some gene therapies can cost millions of dollars per patient.

But for hundreds of babies not yet born in England, diagnosis of rare conditions that have routine treatments will be facilitated by the Newborn Genomes Programme.

“So much of medicine today is given in later life, and saves people for a few months or years,” says Bentley. “It’s so good to see more opportunity here to make a difference through screening and prevention during the early stages of life.

“It is investing maximally in the long-term future as a society, by screening all young people and increasing their chances of survival through genetics so they can realize their enormous potential.”

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Ohio, Pennsylvania offer health services following train derailment, but some residents feel skeptical | CNN

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Darlington Township, Pennsylvania
CNN
—

The municipal building in tiny Darlington Township, Pennsylvania, was buzzing with activity on Wednesday afternoon as a stream of locals arrived seeking information on health screenings, chemical exposures and well testing.

Darlington, home to about 1,800 people, sits just over the border from East Palestine, Ohio, the site of a catastrophic train derailment and controlled burn of toxic chemicals that sent black smoke billowing over the area for days in early February. Residents here say the wind blew acrid smoke into their homes and coated their cars with a fine ash. State and federal officials gave East Palestine residents the all-clear to return to their homes days later.

But residents in both places are now wondering whether their water is safe to drink and their air safe to breathe. The characteristic floral, fruity odor of butyl acrylate still permeates some homes and wafts up from some of the impacted streams that run through the town. Some say they’re experiencing symptoms – cough, headaches, rashes, watering eyes and dripping noses – that might be related to a chemical exposure.

Government-run community resource centers and health clinics have opened in East Palestine and Darlington to answer residents’ questions and connect them to any care they might need. More than 140 people have come to the clinic in East Palestine since it first opened on February 21, according to the Ohio Department of Health. The Darlington center opened February 28, and more than 200 people visited in its first two days, according to the Pennsylvania Department of Health.

Still, some residents are skeptical of the clinics, and the response overall. While many residents who live near the derailment site are following the testing for chemicals in the air and water, what they really want to know is whether they’ve had chemicals from the accident in their bodies, and whether those chemicals have impacted their health.

They’re swapping information online, and seeking out blood tests they hope will identify potential problems. Some are seeking out medical care so there’s a record of their symptoms.

On the advice of a lawyer, Ron Book and his wife came to the East Palestine Health Assessment Clinic on Wednesday afternoon to have their illnesses documented. Book says since the derailment, his nose has been running constantly. He has a sore throat, and he feels stuffy.

“It’s like I have a cold, but I don’t have a cold,” he said.

Book said he saw a doctor who took his vitals and advised him to keep up with the regular blood work that he needs for his ongoing treatment for prostate cancer. He was inside for about 45 minutes, and said the experience was helpful, and about what he expected.

“They can’t heal you,” Book says, “because nobody knows about this chemical.”

At the Darlington center, tables were staffed with experts to answer questions about the chemicals involved in the train derailment, free well and air testing for residents, and potential impacts to area farms.

There were pamphlets on how to manage stress following a disaster and mental health counselors, as well as Zuko, a 3-year-old Great Dane therapy dog.

Residents are also invited to take a nine-page questionnaire to contribute data to a newly launched Assessment of Chemical Exposure, or ACE, study, which is being conducted by the federal Agency for Toxic Substances and Disease Registry. Health investigators can use their data to inform a study into the health effects associated with the chemical exposures after the derailment.

People could see a doctor, or get referrals for a primary care physician.

“I think approximately 40% of people sought some sort of clinical evaluation,” said Nate Wardle, who is the special response project manager for the Pennsylvania Department of Health.

Wardle said when they opened the clinic, they weren’t sure what to expect – whether residents would be angry that it took more than three weeks to get them these services. So far, he said, people have been grateful and eager to get the help.

Jim Denes, who is 71, came to the health clinic in Darlington Township on Wednesday. He said he lives less than 2 miles from the accident site. On Friday of last week, Denes said he felt awful.

“I was just miserable. I was trying to cough up stuff, I couldn’t,” Denes said. “My eyes were all runny and watery.”

He said he took a Covid-19 test, but it was negative.

Denes said he’s extremely tired and had to drag himself to the clinic, but he’s glad he did. The doctor he saw diagnosed him with bronchitis and prescribed an antibiotic. The clinic was a lot closer than his regular doctor in Ellwood City, and he was able to walk in and be seen without a wait.

Denes said the doctor told him he couldn’t say whether it was related to the chemicals that were spilled or not.

Some residents said they have no interest in going to government-run health clinics.

“I honestly, at this point, don’t know who’s working with who and I really just don’t trust anything that has to do with the government right now,” said Giovanni Irizarry, whose family lives within a mile of the train derailment site.

In the evening hours of February 3, his wife Ashley Irizarry was driving to work when she noticed she could see thick black smoke hanging in the air, even though it was dark. Eventually, she saw the raging fire along the railroad tracks.

That night, Ashley had a red rash on her cheeks, her eyes were burning and red and a metallic chemical smell had burned her nose and throat. On Saturday, Giovanni said, his lips burned like he’d had scalding hot soup. Giovanni’s mother, who was living with them, developed a cough so severe she couldn’t catch her breath. The Irizarrys evacuated on Sunday to Boardman, Ohio, about 15 miles away.

They returned home on Saturday, February 11, in anticipation of school restarting on Monday.

As soon as they got close to town, Giovanni said, “I immediately felt my lips like start that burning sensation.”

He and his mom started coughing. His wife and kids developed debilitating and unrelenting headaches. After the kids came home from school on Monday, both started vomiting.

Ashley says she has taken the family to their primary care doctor, an urgent care and the hospital.

“It was not getting better,” she said.

Medical records reviewed by CNN show Ashley was prescribed a steroid and given a chest X-ray due to “toxic effects of gas exposure.” Her son was also diagnosed with chemical exposure.

When the doctors looked into her nose and throat they told her ” ‘Your mucous membranes are all pale. Like they were burned,’ but they didn’t know what to do at this time,” Ashley said in an interview with CNN on Wednesday.

On public Facebook groups, residents are sharing names of providers who will order blood testing for chemical exposures, which isn’t something either of the government-run clinics is doing currently. Some have even tried to do their own research to try to identify the medical codes needed to order tests for specific chemicals in the blood from large labs.

Instead of going to the government health clinic, on Wednesday, Ashley went to see their chiropractor, Richard Tsai, who has been ordering certain blood tests for existing patients who think they have having health problems connected to chemical exposures from the derailment.

Tsai’s practice, Blackhawk Chiropractic, is right next door to the Darlington Township community resource center and clinic that was opened by the Pennsylvania Department of Health and other state agencies this week.

The tests Tsai orders are general and standard in medical care – a test called a complete blood count, which measures levels of red cells, white cells, and clotting factors in the blood; and a test called a basic metabolic panel, which measures blood sugar, electrolytes, and kidney function. If his patients ask for it, he also orders a more specialized test that measure exposure to the chemical benzene. In the past two days, he estimates about 15 patients have asked him for blood testing.

Tsai, who lives in East Palestine, says he’s been frustrated by the government’s response.

“We shouldn’t be having to do this,” Tsai said, in an interview with CNN on Wednesday.

“Why are people having to figure this out on Facebook? These people need to know where to go and what’s available.”

Dr. Bruce Vanderhoff, director of the Ohio Department of Health, pushed back against the idea that the government wasn’t giving people enough information. He said that during the course of the medical assessment at the health clinic, the clinic physician might make recommendations for further testing, but that would be done by the person’s regular doctor.

If people don’t have a doctor that they see regularly, Vanderhoff said they are trying to help residents find one.

Vanderhoff said it would be important for the primary care providers to continue to monitor changes in a patient’s overall health.

“Because when we look at the chemicals involved, especially the primary chemical vinyl chloride, there is simply not a blood test that we can do or a urine test that we can do that would say ‘Aha! You had an exposure,’ ” Vanderhoff said. “That would be great, but that’s just not the case.”

Tsai, who lives in East Palestine, said that he’s legally able to order medical tests, so he does, within limits. “Why wouldn’t you do that?” he said.

Dr. Erin Haynes, the chairperson of the department of epidemiology and environmental health at the University of Kentucky, says she thinks it’s sound for residents to seek out common blood tests.

In an email to CNN, Haynes said in addition to a complete blood count and basic metabolic panel she would add a liver function test, since vinyl chloride, one chemical that was on the train, can damage the liver.

But Haynes says trying to test for specific chemicals may be a step too far.

“Testing for chemical exposure at this point is a difficult,” says Haynes, who has helped impacted communities investigate environmental exposures. “The high levels are now gone, and we aren’t exactly sure what to measure in blood or urine since we don’t know what chemicals formed during the fire. There are suspects, but not clear answers yet.”

Haynes said it would be ideal to collect blood and urine samples now, but store them for later testing, but this would be difficult for a local clinic to do.

Overall, Haynes says the government’s response to chemical spills like this one leaves something to be desired.

“The community is in dire need of an organized and coordinated health monitoring study that includes exposure assessment,” said Haynes, who hopes to bring such a study to the area soon.

Down the road, she says, there’s still a lot to learn about the health impacts of environmental exposures to toxins.

“We also need more research on what these chemicals do and methods for rapid testing,” Haynes said. “Communities with railroad must know what is moving through their community, when and how much. They also must receive training on how to safely respond when a disaster occurs.”

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Cancer screenings could be back to normal after millions missed during Covid-19 pandemic | CNN

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CNN
—

Millions of people across the United States missed routine cancer screenings during the second year of the Covid-19 pandemic, with the prevalence of screening for breast, cervical and prostate cancers in the previous year falling anywhere from 6% to 15% between 2019 and 2021, according to a new study from the American Cancer Society.

“We were thinking there would be a rebound in late 2020,” said Dr. William Dahut, chief scientific officer of the American Cancer Society. “We were surprised to see the continued increase in the number of folks not getting their screenings.”

But more recently, it appears that people are starting to return to routine screenings at rates seen before the pandemic, separate research suggests.

Rates of screening for breast, cervical and colon cancers may have returned to normal, according to more recent data published last week in the journal Epic Research, which is owned by the health care software company Epic.

“As screening rates returned to normal from the drop we previously reported, rates of cancer diagnosis returned to normal as well,” Dr. Chris Alban, a clinical informaticist at Epic Research, wrote in an email.

“We haven’t seen evidence that the screenings missed during the pandemic resulted in worsened patient outcomes, though we plan to monitor this trend to see whether it holds over time,” he said. “The recommended intervals between screenings for a given cancer can be several years, so evidence of advanced cancers can take a long time to appear.”

Due to the declines in cancer screenings as well as barriers to accessing treatment in the early days of the pandemic, not only did physicians nationwide worry that screening and treatment delays led to patients arriving at their offices with advanced cancer, some anecdotally reported seeing upticks in advanced cancers at the time.

The prevalence of screening for breast, cervical and prostate cancers did not return to pre-pandemic levels in 2021, the second year of the Covid-19 pandemic, according to the American Cancer Society’s new study, published Thursday in the Journal of Clinical Oncology.

The study included data on more than 60,000 adults in the United States who were eligible for screening for breast, cervical, prostate and colorectal cancers between 2019 and 2021. The data came from the US Centers for Disease Control and Prevention’s National Health Interview Survey.

The researchers found that between 2019 and 2021, the overall prevalence of eligible adults who completed screening in the previous year fell 6% for breast cancer, 15% for cervical cancer and 10% for prostate cancer. That means there were about 1 million fewer people who got screened for breast cancer, 4.4 million fewer screened for cervical cancer and about 700,000 fewer screened for prostate cancer.

“These declines have significant public health implications as they are expected to lead to more advanced stage cancer diagnosis in the future,” the researchers wrote.

The prevalence of screening for colorectal cancer was unchanged, the researchers found.

The growing popularity of at-home colon cancer screening tests probably offset any decline in colorectal cancer screenings, they wrote.

The researchers also found some racial differences, as the Asian community had the largest declines in breast, cervical and prostate cancer screenings.

“These findings are especially concerning as cancer is the leading cause of death in both Asian American men and women,” wrote the researchers, all from the American Cancer Society.

Dahut said that anyone who missed a routine cancer screening during the early days of the pandemic should catch up now.

“Even in the best of times, the number of folks who are screened is far too low,” he said. “Go ahead and follow the guidelines, get screened when appropriate, and the outcomes will be better.”

The Epic Research study involved data on 373,574 cancer diagnoses entered in patients’ charts in the US between January 2018 and December 2022.

The data came from 190 health care organizations that use software from Epic for their electronic health records. Together, these organizations represent 1,123 hospitals and more than 22,500 clinics, and they agreed to contribute to the de-identified data set, meaning no individual patient can be identified within the data.

The data showed a clear decrease in cancer cases early in the pandemic, which correlates with a decline in screening, but screening rates appeared to return to normal last year, as did cancer detection rates. The data also did not appear to show a significant rise in new diagnoses of advanced cancers through the end of last year.

It’s “good news” that the data demonstrate a return to pre-Covid rates of cancer screening, Dr. Arif Kamal, the American Cancer Society’s chief patient officer – who was not involved in the Epic Research study – wrote in an email. He called the new data intriguing but emphasized that more time is needed to determine whether or when rates of advanced cancers may increase due to missed screenings. It could take years.

“Conclusions regarding whether advanced cancer rates have increased due to missed screenings are a bit premature to reach. This is because cancer takes years to develop, and the resulting effect of missed cancers cannot be known after only a few years,” Kamal said.

“We remain hopeful that as cancer screening rates have returned to baseline, that the two years of missed screenings will not have a long-lasting effect on cancer incident or mortality,” he said. “But more time will tell.”

The data from Epic Research’s study is encouraging, as it suggests that more advanced cancers are not being seen, Dr. David Cohn, chief medical officer for the Ohio State University Comprehensive Cancer Center, wrote in an email.

“Whether this holds up over the next few years is yet to be seen,” he added.

Cohn, a practicing gynecologic oncologist who was not involved in either new study, said that he is “always concerned” about a decrease in screening rates and the resulting impact on later cancer diagnoses.

Yet “these data suggest that folks are getting back to the core business of screening,” he said, “such that these data will hopefully hold up over the next few years without seeing an increase in later diagnoses.”

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For the first time, US task force proposes expanding high blood pressure screening recommendations during pregnancy | CNN

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CNN
—

The US Preventive Services Task Force has released a draft recommendation to screen everyone who is pregnant for hypertensive disorders of pregnancy, by monitoring their blood pressure throughout the pregnancy, and the group is calling attention to racial inequities.

This is the first time the task force has proposed expanding these screening recommendations to include all hypertensive disorders of pregnancy, which are on the rise in the United States.

It means the average person might notice their doctor paying closer attention to their blood pressure measurements during pregnancy, as well as doctors screening not just for preeclampsia but for all disorders related to high blood pressure.

The draft recommendation statement and evidence review were posted online Tuesday for public comment. The statement is consistent with a 2017 statement that recommends screening with blood pressure measurements throughout pregnancy.

It was already recommended for blood pressure measurements to be taken during every prenatal visit, but “the difference is now really highlighting the importance of that – that this is a single approach that is very effective,” said Dr. Esa Davis, a member of the task force and associate professor of medicine at the University of Pittsburgh.

The draft recommendation urges doctors to monitor blood pressure during pregnancy as a “screening tool” for hypertensive disorders, she said, and this may reduce the risk of some hypertensive disorders among moms-to-be going undiagnosed or untreated.

“Since the process of screening and the clinical management is similar for all the hypertensive disorders of pregnancy, we’re broadening looking at screening for all of the hypertensive disorders, so gestational hypertension, preeclampsia, eclampsia,” Davis said.

The US Preventive Services Task Force, created in 1984, is a group of independent volunteer medical experts whose recommendations help guide doctors’ decisions. All recommendations are published on the task force’s website or in a peer-reviewed journal.

To make this most recent draft recommendation, the task force reviewed data on different approaches to screening for hypertensive disorders during pregnancy from studies published between January 2014 and January 2022, and it re-examined earlier research that had been reviewed for former recommendations.

“Screening using blood pressure during pregnancy at every prenatal encounter is a long-standing standard clinical practice that identifies hypertensive disorders of pregnancy; however, morbidity and mortality related to these conditions persists,” the separate Evidence-Based Practice Center, which informed the task force’s draft recommendation, wrote in the evidence review.

“Most pregnant people have their blood pressure taken at some point during pregnancy, and for many, a hypertensive disorder of pregnancy is first diagnosed at the time of delivery,” it wrote. “Diagnoses made late offer less time for evaluation and stabilization and may limit intervention options. Future implementation research is needed to improve access to regular blood pressure measurement earlier in pregnancy and possibly continuing in the weeks following delivery.”

The draft recommendation is a “B recommendation,” meaning the task force recommends that clinicians offer or provide the service, as there is either a high certainty that it’s moderately beneficial or moderate certainty that it’s highly beneficial.

For this particular recommendation, the task force concluded with moderate certainty that screening for hypertensive disorders in pregnancy, with blood pressure measurements, has a substantial net benefit.

Hypertensive disorders in pregnancy appear to be on the rise in the United States.

Data published last year by the US Centers for Disease Control and Prevention shows that, between 2017 and 2019, the prevalence of hypertensive disorders among hospital deliveries increased from 13.3% to 15.9%, affecting at least 1 in 7 deliveries in the hospital during that time period.

Among deaths during delivery in the hospital, 31.6% – about 1 in 3 – had a documented diagnosis code for hypertensive disorder during pregnancy.

Older women, Black women and American Indian and Alaska Native women were at higher risk of hypertensive disorders, according to the data. The disorders were documented in approximately 1 in 3 delivery hospitalizations among women ages 45 to 55.

The prevalence of hypertensive disorders in pregnancy was 20.9% among Black women, 16.4% among American Indian and Alaska Native women, 14.7% among White women, 12.5% among Hispanic women and 9.3% among Asian or Pacific Islander women.

The task force’s new draft recommendation could help raise awareness around those racial disparities and how Black and Native American women are at higher risk, Davis said.

“If this helps to increase awareness to make sure these high-risk groups are screened, that is something that is very, very important about this new recommendation,” she said. “It helps to get more women screened. It puts it more on the radar that they will then not just be screened but have the surveillance and the treatment that is offered based off of that screening.”

Communities of color are at the highest risk for hypertensive disorders during pregnancy, and “it’s very related to social determinants of health and access to care,” said Dr. Ilan Shapiro, chief health correspondent and medical affairs officer for the federally qualified community health center AltaMed Health Services in California. He was not involved with the task force or its draft recommendation.

Social determinants of health refer to the conditions and environments in which people live that can have a significant effect on their access to care, such as their income, housing, safety, and not living near sources for healthy food or easy transportation.

These social determinants of health, Shapiro said, “make a huge difference for the mother and baby.”

Hypertensive disorders during pregnancy can be controlled with regular monitoring during prenatal visits, he said, and the expectant mother would need access to care.

Eating healthy foods and getting regular exercise also can help get high blood pressure under control, and some blood pressure medications are considered safe to use during pregnancy, but patients should consult with their doctor.

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Paging Dr. AI? What ChatGPT and artificial intelligence could mean for the future of medicine | CNN

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CNN
—

Without cracking a single textbook, without spending a day in medical school, the co-author of a preprint study correctly answered enough practice questions that it would have passed the real US Medical Licensing Examination.

But the test-taker wasn’t a member of Mensa or a medical savant; it was the artificial intelligence ChatGPT.

The tool, which was created to answer user questions in a conversational manner, has generated so much buzz that doctors and scientists are trying to determine what its limitations are – and what it could do for health and medicine.

ChatGPT, or Chat Generative Pre-trained Transformer, is a natural language-processing tool driven by artificial intelligence.

The technology, created by San Francisco-based OpenAI and launched in November, is not like a well-spoken search engine. It isn’t even connected to the internet. Rather, a human programmer feeds it a vast amount of online data that’s kept on a server.

It can answer questions even if it has never seen a particular sequence of words before, because ChatGPT’s algorithm is trained to predict what word will come up in a sentence based on the context of what comes before it. It draws on knowledge stored on its server to generate its response.

ChatGPT can also answer followup questions, admit mistakes and reject inappropriate questions, the company says. It’s free to try while its makers are testing it.

Artificial intelligence programs have been around for a while, but this one generated so much interest that medical practices, professional associations and medical journals have created task forces to see how it might be useful and to understand what limitations and ethical concerns it may bring.

Dr. Victor Tseng’s practice, Ansible Health, has set up a task force on the issue. The pulmonologist is a medical director of the California-based group and a co-author of the study in which ChatGPT demonstrated that it could probably pass the medical licensing exam.

Tseng said his colleagues started playing around with ChatGPT last year and were intrigued when it accurately diagnosed pretend patients in hypothetical scenarios.

“We were just so impressed and truly flabbergasted by the eloquence and sort of fluidity of its response that we decided that we should actually bring this into our formal evaluation process and start testing it against the benchmark for medical knowledge,” he said.

That benchmark was the three-part test that US med school graduates have to pass to be licensed to practice medicine. It’s generally considered one of the toughest of any profession because it doesn’t ask straightforward questions with answers that can easily found on the internet.

The exam tests basic science and medical knowledge and case management, but it also assesses clinical reasoning, ethics, critical thinking and problem-solving skills.

The study team used 305 publicly available test questions from the June 2022 sample exam. None of the answers or related context was indexed on Google before January 1, 2022, so they would not be a part of the information on which ChatGPT trained. The study authors removed sample questions that had visuals and graphs, and they started a new chat session for each question they asked.

Students often spend hundreds of hours preparing, and medical schools typically give them time away from class just for that purpose. ChatGPT had to do none of that prep work.

The AI performed at or near passing for all the parts of the exam without any specialized training, showing “a high level of concordance and insight in its explanations,” the study says.

Tseng was impressed.

“There’s a lot of red herrings,” he said. “Googling or trying to even intuitively figure out with an open-book approach is very difficult. It might take hours to answer one question that way. But ChatGPT was able to give an accurate answer about 60% of the time with cogent explanations within five seconds.”

Dr. Alex Mechaber, vice president of the US Medical Licensing Examination at the National Board of Medical Examiners, said ChatGPT’s passing results didn’t surprise him.

“The input material is really largely representative of medical knowledge and the type of multiple-choice questions which AI is most likely to be successful with,” he said.

Mechaber said the board is also testing ChatGPT with the exam. The members are especially interested in the answers the technology got wrong, and they want to understand why.

“I think this technology is really exciting,” he said. “We were also pretty aware and vigilant about the risks that large language models bring in terms of the potential for misinformation, and also potentially having harmful stereotypes and bias.”

He believes that there is potential with the technology.

“I think it’s going to get better and better, and we are excited and want to figure out how do we embrace it and use it in the right ways,” he said.

Already, ChatGPT has entered the discussion around research and publishing.

The results of the medical licensing exam study were even written up with the help of ChatGPT. The technology was originally listed as a co-author of the draft, but Tseng says that when the study is published, ChatGPT will not be listed as an author because it would be a distraction.

Last month, the journal Nature created guidelines that said no such program could be credited as an author because “any attribution of authorship carries with it accountability for the work, and AI tools cannot take such responsibility.”

But an article published Thursday in the journal Radiology was written almost entirely by ChatGPT. It was asked whether it could replace a human medical writer, and the program listed many of its possible uses, including writing study reports, creating documents that patients will read and translating medical information into a variety of languages.

Still, it does have some limitations.

“I think it definitely is going to help, but everything in AI needs guardrails,” said Dr. Linda Moy, the editor of Radiology and a professor of radiology at the NYU Grossman School of Medicine.

She said ChatGPT’s article was pretty accurate, but it made up some references.

One of Moy’s other concerns is that the AI could fabricate data. It’s only as good as the information it’s fed, and with so much inaccurate information available online about things like Covid-19 vaccines, it could use that to generate inaccurate results.

Moy’s colleague Artie Shen, a graduating Ph.D. candidate at NYU’s Center for Data Science, is exploring ChatGPT’s potential as a kind of translator for other AI programs for medical imaging analysis. For years, scientists have studied AI programs from startups and larger operations, like Google, that can recognize complex patterns in imaging data. The hope is that these could provide quantitative assessments that could potentially uncover diseases, possibly more effectively than the human eye.

“AI can give you a very accurate diagnosis, but they will never tell you how they reach this diagnosis,” Shen said. He believes that ChatGPT could work with the other programs to capture its rationale and observations.

“If they can talk, it has the potential to enable those systems to convey their knowledge in the same way as an experienced radiologist,” he said.

Tseng said he ultimately thinks ChatGPT can enhance medical practice in much the same way online medical information has both empowered patients and forced doctors to become better communicators, because they now have to provide insight around what patients read online.

ChatGPT won’t replace doctors. Tseng’s group will continue to test it to learn why it creates certain errors and what other ethical parameters need to be put in place before using it for real. But Tseng thinks it could make the medical profession more accessible. For example, a doctor could ask ChatGPT to simplify complicated medical jargon into language that someone with a seventh-grade education could understand.

“AI is here. The doors are open,” Tseng said. “My fundamental hope is, it will actually make me and make us as physicians and providers better.”

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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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