At the turn of the 21st century, the prevalence of autism spectrum disorder among American children was roughly 1 in 150. That’s according to data collected by the Autism and Developmental Disabilities Monitoring Network of the U.S. Centers for Disease Control and Prevention. A decade later, in 2010, the prevalence had risen to 1 in 68 children. By 2020, it had climbed again—to 1 in 36 children. “The prevalence of Autism Spectrum Disorder (ASD) has increased dramatically in recent decades, supporting the claim of an autism epidemic,” wrote the authors of a 2020 study in the journal Brain Sciences.
The precise cause and extent of that epidemic are contested. Some researchers have observed that the diagnostic criteria for ASD have evolved during that time—stretching and broadening to include a wider array of conditions. And so part of the rise in diagnoses, they argue, is likely attributable to dilating conceptions and a deeper understanding of autism. Still, the increasing prevalence of ASD diagnoses has spurred greater scientific interest in the underlying causes of the disorder. That work has revealed a possible connection between ASD and autoimmune conditions, including systemic lupus erythematosus (SLE).
“For quite a while, there’s been a link between maternal autoimmune diseases and risk for having a child with autism,” says Paul Ashwood, a professor of medical microbiology and immunology at the University of California, Davis and the MIND Institute, which focuses on autism and other neurodevelopmental conditions. He mentions work based on nationwide data collected over a period of many years from mothers and their offspring in Denmark. That research found that prenatal exposure to a number of different maternal autoimmune diseases, including both lupus and rheumatoid arthritis, was associated with an increased risk for an eventual autism diagnosis.
Since then, more research has firmed up the apparent association, and also found evidence of a broader connection between a pregnant woman’s immune system and the risk of an offspring with autism. “What we’ve been looking at a lot more recently is how anything that generates a maternal immune response could be linked to autism risk,” Ashwood says.
In response to a threat, such as a virus or other pathogen, the immune system produces protein antibodies that are intended to neutralize or eliminate the danger. But among people with autoimmune conditions such as systemic lupus erythematosus, the immune system produces antibodies that attack the body’s own healthy proteins or tissues. These are called autoantibodies.
In a 2015 study in the journal Arthritis and Rheumatology, a group of Canadian researchers found that children born to women with systemic lupus erythematosus were nearly twice as likely to develop autism as children of women who did not have SLE. Furthermore, the children of mothers with SLE tended to be diagnosed with autism at a younger age than those of mothers without SLE.
“In-utero exposures to maternal antibodies and cytokines [proteins that regulate the growth of immune system cells] are important risk factors for ASD,” the authors of that study wrote. Women with SLE “display high levels of autoantibodies and cytokines,” which have been shown in animal models to alter fetal brain development and induce behavioral anomalies in offspring, they added.
“Maternal antibodies, including autoantibodies, start crossing the placenta barrier around day 100 of gestation, and we know that this can affect the developing fetus,” says Judy Van de Water, professor of medicine and associate director of biological sciences at the University of California, Davis and the MIND Institute. “One of the things we’re looking at is how these autoantibodies or other aspects of the mother’s immune response could affect neurodevelopment.”
Some research has already found that maternal autoantibodies related to SLE may lead to the development of heart conditions and also blood and liver abnormalities in a developing fetus. Van de Water and her colleagues are examining whether and how other autoantibodies may similarly affect fetal brain development. “Several of the proteins that these autoantibodies target are really highly expressed in the developing brain, and not the mature brain,” she says. This may create unique exposure risks for a developing fetus.
Apart from lupus, several other maternal autoimmune disorders, including rheumatoid arthritis, have been tied to an increased risk for having children with autism. The same is true of immune-related conditions such as asthma and allergies. Van de Water and other researchers are now taking a broad look at how a pregnant woman’s immune system activity may affect the fetal brain. “Anything that impacts maternal immune homeostasis or the balance of the immune response in the mother could impact neurodevelopment in the child,” she says. “So we’re looking at different immune systems responses—what the response is, how intense the response is, the makeup of inflammatory markers—and their relationships to autism.”
An autoimmune condition like lupus is one source of a heightened maternal immune response, but Van de Water says that, under the right conditions, just about anything that triggers an immune reaction could potentially affect neurodevelopment in ways that contribute to autism. “We’re looking at a lot of different maternal immune activations or perturbations—whether from an existing condition or illness, or something that happens during pregnancy,” she says.
In particular, experts highlight the role that inflammatory cytokines may play in autism risk. “The way to think about cytokines in the fetal environment is that they can potentially act in a dose response manner—just as too much is bad, then too little is also bad, but there is this goldilocks level that you need to have for appropriate growth,” Ashwood says. “If there’s some kind of immune condition or inflammatory response that leads to the constant production and release of these cytokines, those could cross the placental barrier and affect fetal development.”
In the brain, for example, the presence of cytokines “could affect neuron growth, neuron proliferation, the connection of neurons to other neurons, synapse formation, neuronal migration, and all sorts of processes that are necessary to build an interconnected network as the brain grows,” he explains. “Having those systems slightly off-kilter can potentially affect the trajectory of neurodevelopment.”
Lupus and other autoimmune disorders are one potential source of cytokine imbalance. But Van de Water says that obesity is another inflammation-related condition—and a far more common one than lupus—that could produce the sort of immune activity that contributes to autism. “Obesity has a major inflammatory component attached to it,” she says. “We just published a paper looking at this, and it turns out that the biggest maternal risk factor for autism was not any autoimmune disease, but asthma and allergies coupled with obesity. You put these two together with obesity and he risk was significantly greater.”
Another potential connection between a mother’s immune activity and her offspring’s autism risk is the microbiome—the community of bacteria that inhabit the gut. Some research has found that the metabolites produced by a mother’s gut bacteria can affect the neurodevelopment of the fetus. Furthermore, there’s evidence that infections, metabolic stress (such as obesity), and other immune-related events can lead to maternal microbiome imbalances that, potentially, could raise her offspring’s risk for autism.
On top of this, there’s evidence that people with autism share some distinct microbiome characteristics, and that gut-related symptoms—diarrhea, constipation, and abdominal pain in particular—are common comorbidities among people with autism. “There’s a lot of interest right now in the microbiome —how it’s formed, the way it nourishes the body, and how it shapes the activity of the immune system,” Ashwood says. There’s also been much recent interest in the so-called “gut-brain connection,” and science has established that the gut’s microbiota influence brain connectivity and functioning.
It’s not certain yet, but it’s possible that maternal autoimmune disorders and other immune-related perturbations could directly or indirectly affect the microbiome of the fetus in ways that contribute to the development of autism.
While there are several plausible mechanisms that could tie autoimmune disorders to autism, experts say this is likely only one small part of the autism equation. “It’s worth remembering that autoimmunity in the general populace is pretty low,” Ashwood says. Also, research on the link between maternal lupus and autism has found that while the risks are elevated, women with the autoimmune condition were still at low overall risk for having a child with autism.
Apart from maternal immune conditions, there’s growing evidence of the role that genetics play in a person’s risk for autism. “More than 100 genes are known to confer risk, and 1,000 or more may ultimately be identified,” wrote David Amaral, a distinguished professor at the University of California, Davis and the MIND Institute, in a 2017 paper on the causes of autism. He goes on to explain that, most likely, a mix of genetic and environmental factors contribute to the development of autism. “It seems clear at this point,” he writes, “that when all is said and done, we will find that autism has multiple causes that occur in diverse combinations.”
Van de Water likewise emphasizes this point. Autism spectrum disorder is a diverse and multifaceted condition, and its underlying causes are likely equally complex. Lupus and other immune-related conditions may be a piece of the puzzle, but they’re just one of many. “Anyone who tells you they know the cause of autism doesn’t know autism very well. There are many layers to it,” Van de Water says. “There seems to be a relationship between the mother’s immune activity and autism, but we don’t have all the answers yet.”
The plague sounds like something out of a history book. But the disease—nicknamed the “Black Death” or “Great Pestilence”—that killed more than 25 million people, about a third of Europe, in medieval times is very much still with us today.
Colorado officials confirmed Tuesday a human case of the plague was detected in Pueblo County. It comes after another human case in Oregon in February.
Caused by the bacterium Yersinia pestis, which is often transmitted by fleas and passed through small animals like rodents or cats, the plague has been responsible for more than 200 million deaths throughout history, dating as far back as 3,800 years ago, according to an article published in the American Journal of Medicine. While the bulk of its casualties came during three major pandemics—in the 6th century in and around Constantinople, in 14th century Europe, and in 19th century Asia—outbreaks have persisted to modern day.
The U.S. Centers for Disease Control and Prevention says an average of seven cases are reported in the country each year, mostly in the western and southwestern states. Globally, there are about 1,000–3,000 cases per year, with the three most endemic countries being the Democratic Republic of Congo, Madagascar, and Peru, according to the World Health Organization.
There are two main forms of plague infection: bubonic, which is caused by a flea bite or blood contact with another infected animal or material and is characterized by swollen lymph nodes or “buboes”; and pneumonic, a severe lung infection caused by inhaling droplets, such as the coughs of infected humans or cats. Over 80% of plague cases in the U.S. have been the bubonic form, according to the CDC, though the pneumonic form is more dangerous.
There is currently no vaccine available in the U.S. that can prevent plague infection, though there are steps you can take, including wearing insect repellent and applying flea control products to pets, to reduce the risk of infection. Today, however, most plague cases don’t result in death because of advances in treatment, including with commonly available antibiotics—though untreated cases can be fatal. The overall risk of death for all types of plague in the U.S., according to Mayo Clinic, is around 11%.
The most important factor for survival is that medical attention begins promptly. Symptoms to watch out for include swollen lymph nodes, sudden fever, head and body aches, weakness, vomiting and nausea, shortness of breath, chest pain, and cough, particularly with bloody mucus.
Speculation about President Joe Biden’s health is rife after the president’s poor debate performance, marked by a stiff gait and soft voice, and muddled answers. Also fueling conjecture is reporting in the New York Times and elsewhere that, according to visitor logs, a neurologist who specializes in movement disorders like Parkinson’s disease has come to the White House eight times in the past eight months.
The White House pushed back, releasing a letter from Dr. Kevin O’Connor, physician to the president, explaining that the specialist, Dr. Kevin Cannard, was at the residence in support of active duty service members assigned to White House operations, some of whom may have neurological issues related to their service. Cannard has only examined Biden during his annual physicals, according to the White House. The president, according to O’Connor’s letter and its account of details of Biden’s physical released in February, does not have symptoms consistent with “any cerebellar or other central neurological disorder, such as stroke, multiple sclerosis, Parkinson’s or ascending lateral sclerosis.”
Parkinson’s is not always straightforward to spot. Here, experts (who are not involved in Biden’s care) explain what people should know about how the disease typically presents and how it’s diagnosed.
The varied signs and symptoms of Parkinson’s disease
Dr. Michael Okun, director of the Fixel Institute for Neurological Diseases at the University of Florida and medical adviser to the Parkinson’s Foundation, says that Parkinson’s disease might be better called Parkinson’s diseases—plural—because the condition has many different causes and expressions.
“There are multiple causes for Parkinson’s and a lot of them have similar symptoms, but we tend to clump them together, because humans like to clump things—it’s easier to deal with,” he says.
For one thing, Okun explains, about 15% to 20% of Parkinson’s cases are associated with a genetic abnormality, and in those cases, patients are likelier to develop symptoms earlier—at age 50, or even 45 or 40. In cases that aren’t genetic, neurologists look at possible environmental causes. “We’ve been interested in pesticides, chemicals, and other things in the environment that might be triggering symptoms,” he says.
Whatever the causes, the brains of Parkinson’s patients generally start to show a deficit in three neurotransmitters: serotonin, dopamine, and acetylcholine. Those neurological changes don’t, at first, lead to the motor symptoms that are commonly associated with the disease. Rather, people may experience a loss of the sense of smell, constipation, and sleep disturbances known as REM sleep behavior disorder. In these cases, dreams may become so vivid that people act them out. “Let’s say you’re fighting off the bad guys,” Okun says. “You might be punching in your sleep, and that’s not a good thing for your bed partner.”
Later symptoms start to involve emotional functions. Parkinson’s patients are at higher risk than other people of experiencing depression, anxiety, and apathy, and when anxiety in particular occurs for the first time later in life, a Parkinson’s screening might be warranted. “People who have new-onset anxiety over the age of 50 are at twice the risk of having Parkinson’s disease,” says Okun.
More common are the motor and cognitive deficits that most define the disease. People with Parkinson’s may become distracted or disorganized or find it difficult to plan or accomplish tasks. About 80% of people with the disease have a resting tremor in the hands—though that means that one out of five don’t have this signature symptom. Posture can suffer as well, and stiffness in the wrists and arms may be evident. Steps may become shuffling, and there can be an overall slowness, called bradykinesia.
“When you have people tap their fingers or open or close their hands, there’s a certain slowness the neurologist is looking for,” says Okun. Speech can be affected too. “Sometimes people repeat syllables in the middle of speech,” Okun says. “The voice can become softer and softer and sometimes trail off.”
Other symptoms affect the face, with blinking becoming less frequent and facial muscles growing stiff or still—a condition called masked face.
How Parkinson’s is diagnosed
In the early stages of Parkinson’s, an internist, family physician, or neurologist is often the first to make a diagnosis, according to the Parkinson’s Foundation. The most common symptoms that lead to a diagnosis are a resting tremor; stiffness or rigidity in the arms, legs, or trunk; or trouble with balance and falls. Magnetic resonance imaging (MRI) or a dopamine transport scan of the brain—in which a radioactive tracer that attaches itself to dopamine receptors is injected into the blood—can also help confirm the diagnosis. No doctor of any kind, of course, can diagnose Parkinson’s in someone without seeing and evaluating the person. When it comes to the president or any other public official or celebrity, Okun abides by the so-called Goldwater Rule—adopted by the American Psychiatric Association after hundreds of psychiatrists presumed, without an exam, to diagnose mental illness in Republican presidential nominee Barry Goldwater in 1964.
“I was one of the physicians who cared for Muhammed Ali,” says Okun, “and we didn’t publish details of his medical record until we had permission of the family.”
Still, Okun urges family members and others to follow the “see something, say something” guideline. “If you see somebody who’s not blinking, if you see someone who has decreased facial expression, if you see someone who is rigid or still in the arms or shuffling or falling, get those folks to the right doctors,” he says. “In Parkinson’s disease you need a whole team.”
Treatment options
There is no cure for Parkinson’s disease, but people with the condition are by no means without recourse. A dozen or so medications and medication cocktails exist, including levodopa, a dopamine replacement drug that helps ease physical symptoms. Also increasingly used are selective serotonin reuptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs), which increase the availability of both neurotransmitters in the brain.
“There are other drugs that go straight to the dopamine receptors and sort of tickle the receptors,” says Okun. “These are called dopamine agonists.” Increasingly popular is also deep-brain stimulation, in which a fine probe is threaded into the brain and adjusts its firing, similar to the way a pacemaker affects the heart.
Losing weight is one the best ways to lower your risk of heart disease, and cutting back on sugar can contribute to that. But sweeteners that mimic the taste of sugar with fewer—or no—calories could be increasing, rather than decreasing, the risk of some heart events.
In a study published Thursdayin the European Heart Journal, an international group of researchers led by a team at the Cleveland Clinic report that higher levels of xylitol, a sugar substitute found in candy and even toothpaste, are linked to a higher risk of heart attack, stroke, and death.
The study included more than 3,000 people in the U.S. and Europe, about half of whom had a history of heart disease, and almost all of whom had at least a few risk factors for heart disease. They were followed for several years. The researchers measured levels of xylitol in participants‘ blood after an overnight fast, and found that those with the highest levels had a two-fold greater risk of having a heart attack, stroke, or dying over three years compared to those with the lowest levels.
To further understand the connection between xylitol and heart events, the scientists then injected xylitol in mice and analyzed what effect the chemical had on the animals’ cardiovascular system. Xylitol increased clotting in the blood by triggering the activation of platelets. The researchers confirmed this mechanism by giving people both a xylitol-based and a glucose-based beverage to drink, and they found that xylitol levels jumped 1000 fold in the plasma immediately after they drank the xylitol beverage, along with levels of clotting factors, but not after they consumed the glucose beverage.
“Even in people who did not have a history of heart disease, xylitol levels still predicted future cardiac events,” says Dr. Stanley Hazen, chairman of cardiovascular and metabolic sciences at the Cleveland Clinic and senior author of the paper.
Hazen says xylitol should be considered similar to cholesterol when it comes to heart disease. Like cholesterol, it’s made in the body, and people have varying levels of the chemical in their blood. But consuming more xylitol as a sugar substitute in food or drinks could be increasing any baseline risk people already have for clotting in the blood. In the study, the levels the team recorded likely reflected baseline levels of xylitol rather than xylitol from the diet, since the chemical clears the body in four to six hours, and the volunteers had fasted overnight.
“The whole purpose of this research is to find pathways that contribute to heart disease beyond the traditional risk factors like cholesterol, high blood pressure, and diabetes,” says Hazen. “And xylitol is one of them.”
This is the second potential new risk factor that Hazen and his team identified; last year, the group found similar increased risk among people with higher levels of another sugar substitute, erythritol, in their blood. Xylitol and erythritol are considered polyols, or sugar alcohols, and both occur in nature, unlike some artificial sweeteners—including aspartame, sucralose, and saccharin—that are synthetic. While the American Heart Association doesn’t specifically address xylitol, it advises that for heart health, people avoid sugar and opt for low-calorie or no-calorie options instead, including ones that contain erythritol.
“I think it is much more prudent to avoid those and be more judicious about the amount of sugar you use,” says Hazen. “The very people who are most at risk—those who are diabetic, obese or have metabolic syndrome—are the ones who are inadvertently reaching for an unhealthy option. I am absolutely convinced that sugar alcohols are a risk for cardiovascular disease based on all of the clinical and mechanistic data we are seeing.”
Hazen is particularly concerned because in his studies, the increased risk is larger than that associated with high cholesterol levels. The U.S. Food and Drug Administration considers artificial sweeteners to be safe in food and beverages, but the latest results suggest more research is needed to better understand the way they affect heart disease. Hazen hopes this early work will seed additional studies that could eventually lead to a test for xylitol and erythritol levels, and even a drug treatment similar to the statins that address cholesterol.
Anthony Andrews, a 34-year-old training manager at a bank in London, had been candid from the very beginning, when he directed Jessica Lockett, an art director, to his Instagram profile, @ibdlife. They had matched on Hinge in January 2020, and he wanted to ensure that she understood what life with inflammatory bowel disease (IBD) and an ostomy bag meant before they got too involved. “Do you still like what you see?” he messaged. Back then, Andrews had been suffering with ulcerative colitis (UC) for 11 years and was days away from a surgery that would require him to wear a bag for the rest of his life. Lockett, intrigued and compassionate, scrolled through his posts, learning quickly exactly what that meant.
“A lot of us [IBD patients] will probably feel like they can’t necessarily open up, but I would openly tell people,” says Andrews, joking that it was his “unique sales pitch” on dating apps. Most women were supportive, he says, but “there were a number of times when people were just like, ‘What’s that? That sounds disgusting. I don’t really want to deal with that.’”
Lockett was different. She messaged back, “Of course I’m still interested.” That put him at ease before they even went on their first date.
IBD, which includes UC and Crohn’s disease, is an incurable autoimmune disease that affects the digestive system. It brings unpredictable symptoms like diarrhea (sometimes with blood), abdominal pain, fatigue, and weight loss—and often first shows up just as young adults are hitting the dating scene, which can make it even more daunting.
Treatments range from nutrition support and medications to more extreme procedures such as ostomy surgery, which typically involves creating an opening in the abdomen, known as a stoma, to allow waste to exit directly from the intestines into a bag outside the body. Surgeries are typically necessary when parts of the digestive system are diseased or damaged and need to be bypassed or removed. With or without surgery, IBD can alter body image and self-esteem, adding a layer of complexity to personal relationships, which can be hard enough without the added pressure of managing a stigmatized disease.
“Everybody’s got challenges, but it feels that IBD can be more challenging on sexuality and intimacy because bloody diarrhea is typically not sexy,” says Marci Reiss, a licensed clinical social worker and the founder and president of the IBD Support Foundation, based in Los Angeles.
But there are many patients, advocates, and medical experts who say the disease can also just be part of your regular life, dating included. From figuring out the right time and way to share your IBD status, to smart planning for outings and sex, here are some tips to help make dating more comfortable for everyone involved.
Everyone with IBD feels differently about opening up about their condition. Some people, like Andrews, may want to get it out of the way before even meeting someone face-to-face. Others may take months to broach the topic.
“It becomes so difficult for people to share, because it’s their deepest pain,” says Reiss. “People think to themselves, ‘Am I lovable with this?’”
Sara Levitt (Instagram @saralevs) posing during a personal photoshoot celebrating World IBD Awareness Day on May 19th 2024, capturing words of affirmation.Yvon Steinthal (Instagram @yspamplemoose)
Montreal-based content creator and model Sara Levitt, 29, would sometimes wait three or four months before sharing her medical condition with guys she dated, requiring stealthy ways to conceal her ostomy bag in the bedroom. To divert their attention, “I would just tell them, ‘I have Crohn’s disease, I have scars…I’m self conscious,’” says Levitt. This allowed her to tuck the bag under a sweater or tank top and keep her arm strategically wrapped around her waist. However, covering it up came with a price. “I would feel constricted and stressed out…and it held me back from developing emotional connections.”
Last year, however, she went public about her IBD, ostomy, and proctectomy (in which the diseased rectum and anus are removed and sewn closed permanently), a.k.a. “Barbie Butt” surgery—so-called by patients themselves because it reminds them of a doll’s bottom. Levitt, who had her first surgery at 13 and is known as “The Bag Bish” on Instagram, spent years learning how to accept her condition and turning it into a blessing. In January, she became the first “ostomate” featured in the monthly men’s magazine MAXIM Australia. “I just reached a point where I was mentally and physically exhausted from hiding the bag, and I realized that I’m living the life I’m living because of it.”
Prepare your elevator pitch
Even before you decide to share, it’s helpful to have a short “elevator pitch” ready, says Laurie Keefer, a gastropsychologist and professor of medicine at Icahn School of Medicine at Mount Sinai Health System in New York City. One of her biggest pieces of advice: “Don’t make it a bigger deal than it has to be.” Her script goes something like this: “I have X condition; I was diagnosed X years ago; this is how it’s treated (medication and/or surgery), and this is how it affects me.” The last point, for example, may be a simple statement about needing to avoid certain foods or alcohol, or the possibility that you might need to get up suddenly to use the bathroom.
Keefer wants her patients to be able to deliver this pitch in their sleep, so they can stop being anxious about it. “Most people, if they don’t have a chronic GI disease, are pretty clueless about what the digestive tract does or is. So for better or for worse, you can use that to your advantage,” says Keefer. Don’t catastrophize every reveal. “Even when you tell people you have an ostomy, they’re like ‘Oh, OK, my grandma had one of those.’ It doesn’t occur to them that that means you’re going to the bathroom outside of your body…most people don’t have an appreciation enough of anatomy and physiology that they even really fully understand what you’re saying.”
Scout the menu and restroom facilities before a date
Before heading out on a date, do a little recon on the venue. Check out the menu online to make sure there are options that work for you. Investigate the restroom situation. Patients and experts agree that having a plan can ease any nerves and let you focus on enjoying the date.
With an invisible disability like IBD, it also helps to know your rights in public and private places. The Restroom Access Act, or “Ally’s Law,” (named after Allyson Bain, a Crohn’s patient from Illinois, who was 14 when she was denied access to a restroom in a department store, leading to a humiliating accident) has been passed in 17 states in the U.S., giving you the right to access a business’s private restroom if you ask. The non-profit organization Girls With Guts has made exercising this right even easier, with its “I Gotta Go” cards. You can easily replicate these at home; they’re super handy to discreetly communicate your urgency to skip the line or ask for restroom access where it’s usually off-limits.
Talk to your GI doctor and other sexual health specialists
Certain IBD symptoms, including pain during sex, leakage, and fistulas (an unusual tunnel between organs, which can get infected) may significantly affect your love life. Regardless of gender or sexuality, surgeries can disrupt or halt certain sexual activities, such as making anal penetration impossible, which can be frustrating to some people.
Your IBD team can point you to specialists like OB-GYNs, urologists, pelvic floor therapists, and even sexual therapists such as psychologists and psychotherapists who understand and can support you. Plenty of people with IBD have vibrant, loving, and intimate relationships.
“There is a connection between the physical and the psychological and vice versa. But sometimes it’s just physical because of all the damage that has been done to the nerves in that area,” says Dr. Aline Charabaty, director of the Inflammatory Bowel Disease Center at Sibley Memorial Hospital in Washington, D.C. Even your GI doctor may hesitate to discuss sensitive topics like emotional and sexual health, says Charabaty, but there should be questions like: How is this disease affecting your emotional health? How is it affecting your sexual health? Are you dating or in a relationship? If that’s not happening, bring it up yourself and ask for referrals.
A heads-up on contraception: If you’re using pills and your IBD causes you to vomit or have severe diarrhea, they might not work as well. Also, some symptoms of STIs can look a lot like IBD flare-ups, so if something feels off, it’s smart to check in at a sexual health clinic. And remember, condoms are your go-to for protecting against STIs while you navigate everything else.
Anticipate the unexpected during intimacy
Navigating intimacy with IBD can be daunting, but there are effective ways to manage leakage and incontinence without ruining a romantic mood. Cherabaty says medications such as Imodium can help patients gain better control over bowel movements, particularly before engaging in sexual activities. Those experiencing ongoing symptoms of diarrhea or incontinence despite managing their disease may need additional strategies: pelvic physical therapy for strength, fiber supplements to firm up stools, or bile acid sequestrants like cholestyramine for the bile acid diarrhea often seen in Crohn’s patients. Some of Cherabaty’s patients who engage in anal sex have reported success using enemas beforehand to ensure cleanliness and comfort. Integrating the job of changing an ostomy bag into your “freshening up” routine can also help manage concerns, allowing you to feel more secure and relaxed.
Also remember that sometimes accidents happen. How you and your date or partner respond to them could say a lot about the strength and understanding in your relationship. Alicia Aiello, 34, the president of Philadelphia-based Girls With Guts, recalls an embarrassing incident with her first serious girlfriend. “She kicked the ostomy bag off by accident in a hotel room with white sheets. And [the waste] went everywhere. It was all over her. It was all over me. It was one of the most mortifying experiences of my life, and I was only 20 then,” she recalls. Thankfully, Aiello and her girlfriend at the time had been dating long enough that they were able to take a pause and a deep breath before assessing the situation and cleaning up as best they could. (And avoid paying a $400 cleaning fee from the hotel.) “That was a positive moment where that was probably the worst thing that could have happened to me while dating someone. And while it was momentarily mortifying, looking back now, I can laugh about it.”
Dr. Neilanjan Nandi, a gastroenterologist and associate professor of clinical medicine at the University of Pennsylvania’s Penn Presbyterian Medical Center, actively supports his IBD patients in gaining sexual confidence. “Feeling sexy is a mind game,” he explains, emphasizing the importance of open communication and helpful products. For those with an ostomy, for example, stylish stoma pouch covers and support belts, or specialized lingerie, such as high-waisted crotchless panties, can make intimacy more comfortable. If odor is a concern, oral ostomy deodorizer pills can be helpful, too.
Nandi also recommends letting your partner get up close and personal with your stoma, perhaps involving them in changing the ostomy bag, or making it part of a shared shower, a tip he got from one of his patients. “You have the water, you can get hot and steamy. You can play with the stoma; you can explore it together,” he says. “If there’s an accident, it’s a comfortable place to wash it off. I know that sounds crazy if you’re new to this, or even if you’re not, but it can make it a big difference.” This openness can not only boost your confidence, but deepens your connection, making intimate moments feel more natural and spontaneous.
Anthony Andrews and Jessica Lockett celebrate their engagement.Anthony Andrews and Jessica Lockett
Four years have now elapsed since Andrews met Lockett on Hinge—four years that included an amazing first date at a wine bar in London’s Borough Market, his ostomy surgery, and moving in together during the pandemic. Now, the two are planning to wed on the fifth anniversary of the day they met. Lockett has held his hand and cried with him in the hospital, cleaned up a messy stoma mishap, and walked around with an ostomy bag herself to understand what it’s like. Andrews admits that what started as casually scrolling the apps to distract himself from his surgery has blossomed into a love more real than he could have ever imagined. “She has been so unbelievably supportive…she’s my best friend,” says Andrews. To others still looking, he says, “Don’t lose hope.”
Washington — A woman who received a pig kidney transplant is back on dialysis because surgeons had to remove the gradually failing organ after just 47 days.
Lisa Pisano was the second person to receive a kidney from a gene-edited pig, and NYU Langone Health announced that she is stable after an operation to remove the organ earlier this week.
The first patient to receive a pig kidney transplant, Richard “Rick” Slayman at Massachusetts General Hospital, died in early May, nearly two months after his transplant. Doctors there said there was no indication he died as a result of the experimental transplant.
Pisano’s heart and kidneys were failing when, in a dramatic pair of surgeries in April, doctors implanted a mechanical pump to keep her heart beating and then the pig kidney.
At first she seemed to be recovering well. But Dr. Robert Montgomery, who led the transplant, said there were “unique challenges” to managing both the heart pump and new kidney. Her blood pressure dropped too low multiple times for optimal blood flow to the kidney.
The kidney lost function until doctors no longer could justify keeping her on immune-suppressing medications, Montgomery said in a statement Friday.
A recent kidney biopsy showed no signs of rejection – the biggest concern in highly experimental animal-to-human transplants – but there was “significant injury” from insufficient blood flow, he said. NYU will further study the explanted kidney for further insight on how it reacted inside a living person.
Montgomery noted Pisano wasn’t a candidate for the life-prolonging heart pump while on dialysis, and her heart disease in turn barred a traditional kidney transplant.
“We are hoping to get Lisa back home to her family soon,” he said. “Her strength and bravery in the face of adversity inspires and drives us as we continue pursuing the hope and promise of xenotransplantation.”
Pisano told the Associated Press in April that she knew the pig kidney might not work but “I just took a chance. And you know, worst case scenario, if it didn’t work for me, it might have worked for someone else.”
More than 100,000 people are on the U.S. transplant waiting list, most who need a kidney, and thousands die waiting. In hopes of filling the shortage of donated organs, several biotech companies are genetically modifying pigs so their organs are more humanlike, less likely to be destroyed by people’s immune system.
Formal studies of such organs are expected to begin next year. Meanwhile, NYU and other research teams have temporarily transplanted pig kidneys and hearts into brain-dead bodies, with promising results. In addition to the Mass General pig kidney transplant, the University of Maryland transplanted pig hearts into two men who were out of other options, and both died within months.
Des Moines, Iowa — More than 4 million chickens in Iowa will have to be killed after a case of the highly pathogenic bird flu was detected at a large egg farm, the state announced Tuesday.
Crews are in the process of killing 4.2 million chickens after the disease was found at a farm in Sioux County, Iowa, making it the latest in a yearslong outbreak that now is affecting dairy cattle as well. Last week, the virus was confirmed at an egg farm west of Minneapolis, Minnesota, leading to the slaughter of nearly 1.4 million chickens.
Overall, 92.34 million birds have been killed since the outbreak began in 2022, according to the U.S. Department of Agriculture.
Although bird flu has become somewhat common among poultry, its spread to cattle has added to worries about the disease. In May, a second dairy farmworker was diagnosed with bird flu, and the virus was detected in both beef and milk. It has been confirmed on dairy cattle farms in nine states.
Health and agriculture officials have said the risk to the public remains low. The U.S. Department of Agriculture said the meat from a single sickened dairy cow was not allowed to enter the nation’s food supply and beef remains safe to eat.
Workers exposed to infected animals are at a higher risk. The only three human cases confirmed in the United States included two dairy workers and one man working to slaughter infected birds on a poultry farm.
A second farmworker in the U.S. has tested positive for bird flu, public health officials from the patient’s home state of Michigan announced May 22.
During a press conference, health officials said the case was “not unexpected,” given the ongoing spread of avian influenza among birds and mammals in the U.S., and that risk to the general public remains low. But the case raises the question: is human-to-human transmission of bird flu a serious concern?
Not at this point, according to Dr. Nirav Shah, principal deputy director of the U.S. Centers for Disease Control and Prevention (CDC). “We have not seen evidence of other cases in this area or elsewhere in any of our monitoring systems, let alone any evidence of human-to-human transmission,” Shah said during the May 22 press briefing. “This is reassuring.”
“Risk is incredibly low right now,” agrees Andrew Pekosz, a professor of molecular microbiology and immunology at the Johns Hopkins Bloomberg School of Public Health. “There is no real evidence of spread from human to human.”
Avian influenza has been spreading widely among birds around the world in recent years, affecting nearly 91 million in the U.S. since January 2022. The virus has also affected mammals, infecting cows, goats, cats, and more in the U.S. alone. So far, two human infections in the country—one in Texas in April, and the new one in Michigan—have been detected in people working on dairy farms where there are infected cows. Both individuals reportedly experienced only mild conjunctivitis-like eye symptoms, then recovered.
The person in Michigan tested negative on a nasal swab but positive on an eye swab, according to the CDC. That’s a promising sign, Shah said during the press briefing, because it suggests the virus is not spreading like a traditional respiratory virus. The seasonal influenza virus, for example, takes root in the upper airways, which is why a sick person can spew potentially infectious respiratory particles when they cough or sneeze.
The avian influenza virus, by contrast, attaches to a type of receptor that is common in animals and birds and is also found in the human eye, but that is not prevalent in the human respiratory tract, explains Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota. “Where I’d get concerned is if we see genetic changes that allow this virus to [easily] attach to the respiratory tract cells of a human,” Osterholm says.
It’s possible, he says, that the virus could eventually change in a way that allows it to do that, but “we’re not seeing that at all yet.”
To answer questions about potential risks to humans, it’s important to better understand how the virus is spreading among cows, Pekosz says. If it’s spreading mostly through exposure to contaminated milking equipment, for example, “that’s probably not relevant to how the virus would spread in humans,” he says. That research remains ongoing, as does genetic analysis of the viral sample taken from the patient in Michigan.
Public-health officials are still taking precautions to reduce the chances of continued spread. Health care workers in Michigan are carrying out contract tracing and distributing influenza antivirals to people close to the infected person, Shah said during the press briefing. A spokesperson from the Michigan Department of Health and Human Services declined to provide additional details.
In April, the Texas patient was told to isolate from others and was treated with antivirals. They were also given antivirals to distribute to people in their household, according to a spokesperson from the Texas Department of State Health Services. “There has been no evidence of onward spread among people so the risk to the general public is low,” the spokesperson added.
The CDC also recently urged states and cities to keep their influenza surveillance efforts at peak-season levels to catch any signs of increased transmission. And the federal government is prepping nearly 5 million vaccine doses in case they need to be distributed quickly, officials said on the press call.
Measures like extra surveillance are precautionary, not reason for alarm, Pekosz says. “It’s preventive,” he says. “It’s trying to understand what’s happening so far—it’s not because we’re seeing evidence” of human transmission.
Public-health officials also said during the press briefing that while the risk to the general public remains low, farmworkers have been told to take additional safety precautions, such as wearing personal protective equipment around sick or potentially infected animals. But the average person doesn’t need to do much at this point, Pekosz says. The most important preventive measure most people can take is avoiding raw milk, which is not treated to remove viruses.
New York — A Michigan dairy worker has been diagnosed with bird flu — the second human case associated with an outbreak in U.S. dairy cows.
The patient had mild eye symptoms and has recovered, U.S. and Michigan health officials said in announcing the case Wednesday. The worker had been in contact with cows presumed to be infected, and the risk to the public remains low, officials said.
A nasal swab from the person tested negative for the virus, but an eye swab tested positive, “indicating an eye infection,” the U.S. Centers for Disease Control and Prevention said in a statement.
The first case happened in late March, when a farmworker in Texas was diagnosed in what officials called the first known instance globally of a person catching this version of bird flu from a mammal. That patient also reported only eye inflammation and recovered.
Since 2020, a bird flu virus has been spreading among more animal species — including dogs, cats, skunks, bears and even seals and porpoises — in scores of countries. The detection in U.S. livestock earlier this year was an unexpected twist that sparked questions about food safety and whether it would start spreading among humans.
That hasn’t happened, although there’s been a steady increase of reported infections in cows. As of Wednesday, the virus had been confirmed in 51 dairy herds in nine states, according to the U.S. Agriculture Department.
Fifteen of the herds were in Michigan. Health officials there have declined to say how many people exposed to infected cattle have been tested or monitored.
The virus has been found in high levels in the raw milk of infected cows, but government officials say pasteurized products sold in grocery stores are safe because heat treatment has been confirmed to kill the virus.
The new case marks the third time a person in the United States has been diagnosed with what’s known as Type A H5N1 virus. In 2022, a prison inmate in a work program picked it up while killing infected birds at a poultry farm in Montrose County, Colorado. His only symptom was fatigue, and he recovered. That predated the virus’s appearance in cows.
Sue Gray, 59, has been sick half her life. But it took two decades to confirm why.
When Gray was 30 and living with her then-husband in the middle of the woods in upstate New York, she felt a tick on her scalp one day after taking a shower. Her former husband plucked it off with tweezers, and “that was the end of that—for that day,” Gray says.
Over the next few months, however, Gray’s health began to decline. She suffered frequent respiratory infections and developed a twitch in her eye. Then, a few weeks after the twitch began, she felt the sensation of ants crawling up and down her legs, even though nothing was there. That made Gray nervous enough to book an appointment with a neurologist. Remembering her recent tick bite, Gray asked to be tested for Lyme disease—but the results came back negative. Looking back, knowing what she does now about the faultiness of Lyme tests, she wishes she’d been retested. But her doctor just sent her on her way.
Over the next two decades, Gray’s neurological issues continued and she progressively developed new symptoms: numbness and tingling in her back, chronic pain, anxiety, and an uncontrollable rage that made her feel like an entirely different person. She knew something was seriously wrong, but she didn’t know what. “I was scared to death,” she says.
In 2007, Gray was diagnosed with multiple sclerosis. She was stable for a while, but in 2014, her symptoms took a turn for the worse and she was hospitalized. Doctors ran a battery of tests, and one for Lyme came back positive, confirming Gray’s initial hunch from decades earlier. Between scouring the internet for information and visiting countless doctors, getting to that point felt like having an unpaid full-time job for most of her adult life. “It’s been hell,” Gray says.
“You wouldn’t believe the extent of the burning, fiery pain that sits in my back,” Gray says. “Words really can’t express how debilitating the pain is. It feels like there’s a blow torch directed at my lower back and it never turns off.”Jiatong LuLike many people coping with chronic Lyme disease, Gray faces hefty medical bills and significant financial strain. Insurance limitations mean all ongoing treatment expenses must come out of her pocket.Jiatong Lu
Thousands, if not millions, of people in the U.S. have lived through versions of that hell. Nearly half a million people in the U.S. are diagnosed with Lyme disease every year after being bitten by ticks typically carrying the bacteria Borrelia burgdorferi. In its acute phase, Lyme disease causes symptoms including fatigue, headaches, and muscle aches. As the infection proliferates in the body, it can spiral into arthritis, chronic pain, heart palpitations, inflammation of the brain, neurological issues, and more.
Most people who are treated with a two- to four-week course of antibiotics get better. But the U.S. Centers for Disease Control and Prevention (CDC) estimates that treatment fails for up to 10% of patients, who develop what is officially known as post-treatment Lyme disease syndrome (PTLDS), a lingering condition that comes with symptoms like profound fatigue, body aches, and cognitive impairment. A small 2022 study put the number a little higher, finding that about 14% of patients properly treated for Lyme experienced prolonged symptoms. And those figures don’t even include people like Gray, who were either never treated for acute Lyme or treated too late. (Many patients prefer the term “chronic Lyme disease,” which is more inclusive of people who were treated late, inadequately, or not at all.)
For years, much of the medical establishment has downplayed or outright dismissed the idea of chronic Lyme disease, for which there is no definitive diagnostic test or treatment. Kim Lewis, a biology professor at Northeastern University who researches Lyme disease, thinks that’s because the medical system isn’t comfortable with uncertainty. “It is much easier, psychologically, to conclude that chronic Lyme doesn’t exist” than to say that it does but no one knows what to do about it, Lewis says. “The best way to solve a problem is to announce that it doesn’t exist.”
Over the last few years, though, there’s been a renaissance in Lyme research. Buoyed by widespread acceptance of Long COVID—which similarly results in chronic symptoms after what “should” be a short-lived illness—the medical establishment is looking anew at post-Lyme complications. The U.S. National Institutes of Health expects to grant more than $50 million for the study of Lyme disease this year, doubling its 2015 budget for the condition, and the U.S. National Institute of Allergy and Infectious Diseases (NIAID) last year awarded $3 million in first-year grants for PTLDS research. As interest in the condition grows, scientists across the country have reported promising findings related to diagnosis and treatment of chronic Lyme, bringing patients closer to mainstream acceptance—and hopefully, eventually, a cure.
“Lyme impacts so many people, and it has never had its moment in the spotlight,” says Lindsay Keys, a patient advocate who directed The Quiet Epidemic, a 2022 documentary on the subject. “I am optimistic that this could be chronic Lyme’s moment.”
Barbara Gulan has been battling Lyme symptoms since her childhood—but she wasn’t diagnosed until she was 43 years old. Leading up to that point, Gulan, 60, faced a series of misdiagnoses, including menopause and “stress.” Over time, her health deteriorated; she now lives with balance issues, vertigo, arthritis, lupus, hypothyroidism, muscle spasms, non-epileptic seizures, chest pain, insomnia, ocular migraine, fatigue, anxiety, heat and light sensitivity, nerve damage, debilitating exhaustion and pain, memory issues, brain fog, and more. Gulan has depleted her life savings paying for treatments and lost her job due to her illness, leaving her at risk of homelessness. She currently lives in government housing in New York with a severe lack of resources and safety, mostly isolated from friends and family who do not understand her illness.
Among her many other Lyme symptoms, Gulan experiences “floaters” in her vision, which she drew as she sees them.
Jiatong Lu. Drawing: Barbara GulanMichael Pasquarella, 30, has been battling severe Lyme disease symptoms since 2018. He received several misdiagnoses before being diagnosed with Lyme in 2019. He continues to experience intermittent Bell’s palsy, joint and muscle pain, neck stiffness, numbness, tingling, chronic pain, vision disturbances, balance issues, dizziness, difficulty breathing and swallowing, tremors, memory loss, mental-health issues, fatigue, and more. These debilitating symptoms compelled him to quit his career as a filmmaker.Jiatong Lu
Lyme disease is notoriously difficult to diagnose. While many people develop a telltale bullseye-shaped rash after being bitten by an infected tick, up to 30% of people don’t, and others may never notice a rash that forms on a hard-to-see body part. Other early Lyme symptoms—like headaches, muscle aches, and fatigue—can be easily mistaken for those of different conditions.
It’s hard to blame patients for turning to these methods, when approved tests are not 100% accurate even during the acute phase of a Lyme illness. False negatives are common, especially when people are tested early in their infections, since it can take weeks for the body to mount an antibody response strong enough to register on tests. But the situation is even more complex when symptoms have dragged on for months or years, since someone may have antibodies long after an acute infection is gone. “The antibody tests that we’re using currently cannot tell the difference between an active infection and a long-time-ago exposure,” says Michal Tal, an immunoengineer at the Massachusetts Institute of Technology who studies Lyme.
At the moment, there’s no other objective biomarker that clinicians can use to tell whether someone’s ongoing symptoms are related to Lyme. Researchers have found some clues, including differences in the genes, health histories, and microbiomes of people who develop chronic symptoms relative to those who don’t, but there is not yet a surefire way to detect the condition, which leads some doctors to conclude that it’s not real. Many patients also report symptoms that fall outside what the CDC recognizes as signs of PTLDS—namely fatigue, body aches, and difficulty thinking—which also complicates the diagnostic process.
For most of his life, Cody Mode, 30, has lived with Lyme disease symptoms including food and heat sensitivities, insomnia, compulsive behavior, depression, and suicidal thoughts. In the past, he turned to drugs and alcohol to numb the pain, but he gave up those coping mechanisms when his oldest child was born. Today, Mode lives with his wife, Rose, and five children in a small Maine town near the Canadian border, where it can be difficult to find adequate Lyme treatment. The Modes and two of their kids have been diagnosed with Lyme. The other three children—including Scarlet, 6, pictured—also have symptoms but have not been diagnosed, in part because the family can’t afford regular medical care. “If it weren’t for my wife and children needing me, I might have succumbed to suicidal thoughts long ago,” Mode says. “Every day, I contend with intense suffering, yet I strive to better my family’s lives despite my debilitating condition.”Jiatong LuBeau, the Modes’ 12-year-old son (top), received a Lyme disease diagnosis at age 9. He has been grappling with learning and memory issues since preschool, particularly struggling with spelling and writing. Beau also experiences tics, anxiety, depression, rage, OCD, and sleep disorders.
Meanwhile, Everett, 8 (bottom), hasn’t received a Lyme disease diagnosis but displays signs like swollen lymph nodes, rashes, sporadic pains, food allergies, and fatigue.
Jiatong Lu
The Modes’ 10-year-old daughter, Sun (pictured with Rose), was diagnosed with Lyme disease at age 6. Sun lives with sensory problems, leg and foot pain, and eating challenges that required a feeding tube during infancy.Jiatong Lu
Cody Mode, 30, learned that the hard way. He’s lived with symptoms including chronic pain, insomnia, brain fog, and sensory and temperature-regulation issues since he was a kid—in retrospect, he believes, tracing back to tick bites he sustained as a child in Alaska. These issues went unexplained for years; he recalls one doctor shaking him by the shoulders, shouting that everything was in his head. But finally, in his mid-twenties, he was diagnosed with Lyme on a test from a private laboratory that he took after moving to New England with his family.
Today, Mode’s wife, Rose, and two of his five children have also been diagnosed. The other three kids have Lyme-like symptoms, but haven’t officially been diagnosed.
The Modes aren’t able to work full-time jobs because their symptoms are unpredictable and can leave them unable to function. They also decided to homeschool their children, since the kids were missing so many classes due to health issues. But despite the massive toll Lyme has taken on his family, Mode says they regularly encounter physicians who don’t believe there’s anything wrong with them and wave off their diagnoses, saying they’re based on quack tests. “Every time I go to the doctor, I’m worried,” he says.
NIAID has called for more research on Lyme diagnostics, and some scientists are working toward innovations like at-home tests, urine tests, and better antibody tests. In addition, Akiko Iwasaki, an immunobiologist at the Yale University School of Medicine, is working with Tal to map an immune profile of chronic Lyme, analyzing patients’ blood and saliva samples to search for biological markers that may differentiate people who have long-term symptoms from those who don’t. And Dr. John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center, is studying whether functional MRIs can detect changes in the brains of PTLDS patients, relative to healthy people.
“I have spent the last 15 years trying to prove that [chronic Lyme] is real,” Aucott says. Only when the medical and scientific establishments believe that it is, he says, will anyone be willing to fund major treatment trials.
In 2015, Syd Young, 25, experienced sudden Tourette-like symptoms, including shaking, verbal outbursts, and head swings. Initially misdiagnosed as a psychological issue, additional testing in 2016 confirmed Lyme disease and co-infections. Young, who lives in Connecticut, was unable to pursue a college degree due to her severe fatigue, brain fog, pain, and allergic reactions to most medications. A trio of IV antibiotics brought some relief in 2021, until Young’s insurance decided—against her physicians’ advice—that the drugs were no longer medically necessary. Young became malnourished after starting oral antibiotics in 2022, which caused her to vomit repeatedly and made it difficult to eat. With the help of supplements, Young is now able to tolerate some food, but she is still not at a healthy weight. Jiatong LuIn 2011, Nicholas, 38, experienced multiple tick bites while volunteering at a meditation retreat center in New York. Subsequently, he developed severe joint pain. His doctor prescribed a 20-day course of antibiotics, initially alleviating his symptoms. But a few months later, Nicholas suffered a resurgence of Lyme symptoms, which worsened over time. Reverting to oral antibiotics proved ineffective, and he resorted to intravenous antibiotics, which provided some relief until his insurance stopped covering the treatments.
The illness progressed aggressively, leaving him physically and mentally disabled, struggling to take care of himself and get proper treatment. Nicholas faced a period of homelessness. He now lives in a barn in New York without heat or running water.
Jiatong Lu
Treatment for both acute and chronic Lyme is a puzzle. For most patients who are accurately diagnosed with acute Lyme, a course of antibiotics (often doxycycline) wipes out the infection. But about 10% of the time, that approach doesn’t work, leaving a small-but-significant minority of patients with PTLDS. Tal is studying the immune systems of people for whom treatment works versus those for whom it doesn’t, in hopes of predicting who will go on to develop chronic symptoms so that doctors could intervene early with immune-system-altering drugs and better monitor patients’ recoveries.
But right now, doctors don’t know why treatment sometimes fails, or for whom it will; some outright reject the idea that treatments don’t always work. “Instead of admitting that it fails 10% of the time, we have just been sweeping this under the rug and calling these people crazy,” Tal says.
But at least PTLDS is a CDC-recognized diagnosis. The term “chronic Lyme” is even less accepted within the medical establishment. The Infectious Disease Society of America has been sued by patients for rejecting it as a legitimate medical diagnosis, allegedly leading to insurance-coverage denials. (A judge dismissed those claims in 2021, but patients have continued to fight to move the case forward.) The CDC discourages use of the term “chronic Lyme” because, as the agency says, “it implies that prolonged symptoms are caused by an ongoing bacterial infection when, in fact, the cause is not currently known.”
It’s true that researchers don’t know what causes post-Lyme symptoms. It’s possible that bacterial fragments stubbornly linger in the body, either causing ongoing infection or interacting with other pathogens, Tal says. Or, she says, it’s possible that the bacterium causes the immune system to attack itself, or triggers another kind of abnormal immune response that outlasts the initial infection. But no one really knows, because a relatively small number of scientists have researched Lyme’s chronic symptoms over the past several decades, Aucott says.
Audrey Lambidakis, 31, is undergoing bee venom therapy to treat chronic Lyme disease. Some studies suggest that bee venom may act as an antibacterial agent, but more research is required to confirm this hypothesis. Jiatong LuAfter two years and three months of using the experimental therapy, however, Lambidakis, who lives in California, has seen significant improvement in her more than 35 symptoms.Jiatong Lu
Patient advocates have also been effective at pushing for change and raising awareness, including by appearing in recent documentaries including The Quiet Epidemic and I’m Not Crazy, I’m Sick, which came out in 2023. In April, Keys, director of The Quiet Epidemic, met with lawmakers on Capitol Hill to call for a public-awareness campaign and more research funding related to Lyme, winning support from representatives in states including Massachusetts, New Jersey, Maryland, Pennsylvania, and Connecticut. “The research is finally happening, exploring the questions that patients have been asking all along,” Keys says.
That wave of support stems in part from a newfound respect for post-infectious illnesses in the wake of the COVID-19 pandemic, she says. “People have had to reckon with the fact that we’re living amongst infectious diseases and anyone can be impacted,” Keys says.
An estimated 7% of U.S. adults have chronic post-COVID-19 symptoms known as Long COVID—a patient group too large to ignore and one that has granted newfound credibility to people with other long-discounted post-infectious illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome and chronic Lyme. Long COVID is also subject to many of the same limitations and knowledge gaps as chronic Lyme—there’s no agreed-upon biomarker for diagnosing it, no clear reason why some people have long-term symptoms and others don’t, and a significant group of patients who never tested positive for acute COVID-19—but it has become an accepted diagnosis anyway, with more than $1 billion of federal research funding poured into it.
“The chronic Lyme community is trying to grasp onto what’s happening right now with Long COVID and hold on for dear life,” Tal says. “If Long COVID is real, and Long COVID looks [almost] exactly like chronic Lyme, then do we need to go back and reassess some of our assumptions about chronic Lyme?”
Shivani’s journey with Lyme disease started long before she was aware of it. Looking back, she believes she has been grappling with illness and disability for most of her life, likely linked to Lyme disease contracted while growing up on Long Island. At 33, a tick bite was followed by what she describes as “a neurological explosion” causing uncontrollable rage, severe insomnia, and intense burning sensations in her joints and lymph nodes, leaving her teetering on the edge of psychosis. Five years have passed since, and Shivani remains bedridden most of the time. Jiatong Lu
There have already been promising research breakthroughs. Timothy Haystead, a professor of pharmacology at the Duke University School of Medicine, is working on an approach borrowed from oncology that he describes as a “theranostic,” combining therapy and diagnostics. Haystead’s team is studying a cancer drug that targets proteins in the Borrelia bacterium, enters its cells, and then destroys the bacterium from within, all while sparing healthy surrounding tissue. “The same molecule that you use to detect the disease is also used to kill it,” he explains.
Haystead is hopeful that clinical trials in mammals, and then humans, will move forward within the next few years. Another research team, this one at the University of Massachusetts, Amherst, is also testing cancer drugs for use against Lyme bacteria, following some preliminary but promising findings in lab studies.
Meanwhile, at Northeastern, Lewis is studying an “old, abandoned antibiotic” that’s “lousy” against most pathogens, but in animal trials appears to be “exceptionally potent” against Borrelia. Lewis’ team partnered with a drug-development company that recently began preliminary human trials of the antibiotic. Research will start with patients who have acute Lyme, and if the drug works well in this population and cuts down on the percentage of people who develop lingering symptoms, it could feasibly then be tested among people who already have chronic illness, Lewis says.
Other labs, including one at Stanford University, are also taking a second look at existing antibiotics, searching for answers in medications that are already approved and available—and, thus, that could relatively quickly make it to patients if they prove effective.
Still, much more research is required before doctors get anywhere close to prescribing these potential therapies to chronic Lyme patients. The road is long, but Lewis says it’s important to look for new treatments, even as other researchers continue to study the root causes and underlying biology of chronic Lyme. Believing it exists is only the first battle.
Right now, a diagnosis may do more to soothe the mind than the body. Shivani, 37, has lived much of much of her life with symptoms—ranging from physical tics to gastrointestinal issues—that she thinks were likely related to Lyme disease contracted while growing up on Long Island. Then, at age 33, a tick bite preceded a “neurological explosion” that made her body and brain feel like they were on fire and resulted in hallucinations, rage, and insomnia. Shivani, who asked to use only her first name, tested negative for Lyme using the CDC-recommended testing protocol but positive on a test from a private laboratory—a result that she says some doctors still reject.
The diagnosis offered some clarity but little else. Shivani says she initially felt some improvement after taking antibiotics, but the results didn’t stick. None of the mainstream treatments her doctors have prescribed have made a meaningful, lasting difference—and some, she says, have been actively harmful, including a prolonged course of benzodiazepines that she says caused cognitive injury and antibiotics that she says made it nearly impossible to eat. Too sick to work or live independently, she has relied heavily on the care of her parents and friends.
Facing massive pain and little hope, Shivani says she has often felt suicidal. She remains alive in large part, she says, due to her spiritual beliefs and her deep-seated sense that “there’s something to fight for,” whether that’s sharing her story, serving as a voice for those who are suffering, or simply getting better so she can spread love and positivity in the years to come.
Moving forward isn’t easy; sometimes she wonders how long she can stand the suffering she faces every day. But, she says, “I’m pretty undefeatable, when it comes down to it.”
Jiatong Lu is a mixed-media artist and photographer based in New York. Her work focuses on exploring individual and collective dilemmas, delving deep into the connections between personal and shared experiences, societal culture, and social policies.
After being diagnosed with neurological Lyme disease in 2021, Jiatong Lu started her documentary project “Nowhere Land,” photographs from which are included throughout this piece. Through intimate narratives, the project captures the silent suffering, daily battles, and emotional isolation endured by individuals living with this invisible and debilitating condition, aiming to shed light on the plights encountered by numerous chronic Lyme disease patients.
The first calls that Dr. Barb Petersen received in early March were from dairy owners worried about crows, pigeons and other birds dying on their Texas farms. Then came word that barn cats — half of them on one farm — had died suddenly.
Within days, the Amarillo veterinarian was hearing about sick cows with unusual symptoms: high fevers, reluctance to eat and much less milk. Tests for typical illnesses came back negative.
Petersen, who monitors more than 40,000 cattle on a dozen farms in the Texas Panhandle, collected samples from cats and cows and sent them to Dr. Drew Magstadt, a friend from college who now works at the veterinary diagnostic laboratory at Iowa State University.
The samples tested positive for a bird flu virus never before seen in cattle. It was the first proof that the bird flu, known as Type A H5N1, could infect cows. As of Wednesday, 36 U.S. herds had confirmed infections, according to the U.S. Agriculture Department.
“It was just a surprise,” recalled Petersen. “It was just a little bit of disbelief.”
At the same time, on almost every farm with sick animals, Petersen said she saw sick people, too.
“We were actively checking on humans,” Petersen said. “I had people who never missed work, miss work.”
So far, two people in the U.S. have been confirmed to be infected with H5N1, most recently a Texas dairy worker linked to the cattle outbreak, according to the U.S. Centers for Disease Control and Prevention. About two dozen people have been tested and about 100 people have been monitored since the virus appeared in cows, Dr. Demetre Daskalakis, a CDC respiratory diseases official, told reporters Wednesday.
Daskalakis said CDC has seen no unusual flu trends in areas with infected cows, but some experts wonder if anecdotal reports of sick workers mean more than one person caught the virus from the animals.
Petersen said some workers had symptoms consistent with flu: fever and body aches, stuffy nose or congestion. Some had conjunctivitis, the eye inflammation detected in the Texas dairy worker diagnosed with bird flu.
Dr. Gregory Gray, an infectious disease epidemiologist at the University of Texas Medical Branch in Galveston, has been taking samples from livestock and people on two Texas farms. On farms with confirmed cattle infections, there have also been reports of mild illnesses among the workers, he said.
His research has been difficult. Many workers are reluctant to be tested. That may be because they have limited access to health care or fear divulging private health information.
Without confirmation, no one knows if the sick workers were infected with the bird flu virus or something unrelated, Gray said.
“They seem to be linked in time and space, so one would say it’s biologically plausible,” said Gray.
Some of the workers who fell ill sought treatment and were offered oseltamivir, an antiviral drug sold under the brand name Tamiflu, Petersen said.
Some farm workers who were exposed to infected animals or people were offered the medication, CDC spokesman Jason McDonald said. State health officials are responsible for evaluating and providing treatment, according to federal guidelines.
Health officials in Texas provided Tamiflu to the person known to be infected with H5N1 and household members, plus two people on a second dairy farm who tested negative but were exposed to infected animals, said Chris Van Deusen, a spokesman for the Texas Department of State Health Services. He said he wasn’t sure if others had been offered the antiviral.
Farmers have been hesitant to allow health officials onto their land, said Dr. Kay Russo, a Colorado veterinarian who consulted about the outbreak with Petersen.
“This particular disease is looked at as a scarlet letter,” Russo said. “It has this stigma associated with it right now.”
Russo called for wider testing of cattle, people and milk.
“We do not know what we do not measure,” she said. “Unfortunately, the horse left the barn and took off a lot faster than we were able to mobilize.”
Gray worries that a recent federal order requiring testing of all lactating dairy cows moving between states could hinder cooperation even further. All labs that conduct tests must report positive results to the Agriculture Department. But many farmers may simply decide against testing, hoping to outlast the outbreak, he said.
The reluctance of workers and farmers to allow testing is “greatly hampering” understanding of how the virus spreads, how large the outbreak is now and how quickly it may grow, Gray said.
“It’s a negative, very negative, effect,” he said.
Petersen said she understands workers’ and farmers’ fears. She praised the farmers who had been willing to let her gather the first samples that confirmed the outbreak and reflected on what the results could mean.
“You immediately think about the cows, the people that care for them and the families that have these farms,” she said. “You’re thinking about the big picture, long term. Your mind starts to go down that entire path of concern.”
Pfizer Inc.’s RSV shot produced immune reactions in young adults at higher risk of severe illness just as well as in older people, spurring the company’s plans to apply for wider U.S. approval.
A single dose of the vaccine, called Abrysvo, produced a strong immune response in adults ages 18 to 59 with conditions such as asthma, diabetes, or chronic lung disease, Pfizer said. Based on the final-stage trial results, the company plans to ask the Food and Drug Administration to extend the shot’s approval to adults 18 and older.
RSV, or respiratory syncytial virus, is a flu-like illness that affects elderly adults and babies most severely. The market for adult vaccines alone could reach $11 billion by 2032, according to Bloomberg Intelligence, making it a lucrative target for drugmakers like Pfizer as sales of COVID-19 shots fade. Last year, Pfizer and GSK Plc were the first companies to reach the US market with RSV vaccines, and another made by Moderna is expected to gain U.S. approval next month.
Pfizer’s vaccine is now approved for adults 60 and up, as well as for use in pregnant women to protect newborns for up to six months after birth; sales were $890 million last year. Pfizer Chief Executive Officer Albert Bourla said in January that he was committed to stepping up efforts to take more market share for the vaccine in 2024.
No shots have yet been approved to prevent RSV in high-risk adults ages 18 and up, though Moderna is also running a trial in a similar population. Generally, these young adults don’t get as seriously ill from the virus as older people and babies do. The company is also conducting a study in immunocompromised patients 18 and older and expects to share results later this year.
Usage in younger adults would ultimately depend on the recommendation of the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices. If the vaccine were approved, the committee would have the flexibility to modify recommendations as appropriate, said Iona Munjal, executive director of clinical vaccines R&D at Pfizer.
GSK is exploring the possibility of running a clinical trial in patients younger than 50, but is currently focused on adult populations with the highest risk of RSV, according to a spokesperson. The company has already filed for FDA approval to extend RSV vaccination to adults 50 to 59 years old who are at increased risk of disease.
Pfizer’s trial included 681 people, roughly two-thirds of whom got one dose of the vaccine while one-third received a placebo.
In a rare case, the U.S. Centers for Disease Control and Prevention (CDC) confirmed on April 1 that a person in the U.S. has tested positive for avian influenza, also known as bird flu. Despite the positive test, however, the CDC says risk to the general public remains low.
Health officials have been tracking an outbreak of highly pathogenic avian influenza since a new variant emerged and began killing birds on multiple continents in 2020. Sixty-seven countries reported outbreaks in 2022, according to the World Health Organization (WHO), followed by another 14 in 2023. Human cases, however, remain rare. Only 11 infections resulting from the currently circulating strain have been reported globally since 2021.
Since January 2022, bird flu viruses have been detected among more than 82 million birds in the U.S., according to the CDC. More recently, mammals in the U.S.—including dairy cows and goats—have tested positive.
According to the CDC’s April 1 announcement, the person who tested positive had contact with cows in Texas presumed to have bird flu. Their only reported symptom was conjunctivitis-like eye redness. They were told to isolate and are recovering after being treated with flu antivirals, which seem to work against the virus, the CDC says. (Seasonal flu vaccines do not protect against avian flu, however.)
The U.S.’ last human case of avian flu was reported in 2022, after someone was exposed to infected poultry in Colorado. They went on to recover.
The CDC maintains that risk to the general public is low, although people who are in prolonged close contact with birds and livestock may be at increased risk of infection. The agency advises avoiding direct contact with sick or dead animals, as well as any materials that may have been contaminated by an animal infected with avian flu. People who may have been in contact with infected animals should be monitored for symptoms including eye redness, fever, cough, sore throat, congestion, muscle aches, fatigue, and shortness of breath. The disease’s severity can range from mild to fatal.
Food safety is not a major concern at this point, according to the U.S. Department of Agriculture (USDA). Poultry products are inspected for signs of disease before being made available for purchase, and dairy farms have been directed to destroy milk from infected cows. The pasteurization process also removes viruses from milk, and properly cooking eggs and poultry kills bacteria and viruses.
NEW YORK — The number of U.S. tuberculosis cases in 2023 were the highest in a decade, according to a new government report.
Forty states reported an increase in TB, and rates were up among all age groups, the Centers for Disease Control and Prevention said Thursday. More than 9,600 cases were reported, a 16% increase from 2022 and the highest since 2013.
Cases declined sharply at the beginning of the COVID-19 pandemic, but have been rising since.
Most U.S. TB cases are diagnosed in people born in other countries. Experts say the 2023 number is in part a combination of a surge in TB cases internationally—the World Health Organization said TB was behind only COVID-19 in infectious fatal diseases worldwide in 2022. And there are also increases in migration and post-pandemic international travel.
But other factors are also at play, including other illnesses that weaken the immune system and allow latent TB infections to emerge.
CDC officials expected TB numbers would rise, but the 2023 count “was a little more than was expected,” said Dr. Philip LoBue, director of the agency’s Division of Tuberculosis Elimination.
Despite the jump, the number and rate of new TB cases each year remains smaller than it was in the past, and the U.S. has a lower rate of new TB cases than most countries.
Tuberculosis is caused by bacteria that usually attack the lungs, and is spread through the air when an infectious person coughs or sneezes. If not treated properly, it can be fatal. In the late 1800s, TB killed one out of every seven people living in the United States and Europe. But the development of antibiotics and public health efforts succeeded in treating infections and tracking down those they infected, leading to cases falling for decades.
The new CDC statistics are not a count of how many people were newly infected in 2023, but rather of how many people developed a cough or other symptoms and were diagnosed.
An estimated 85% of the people counted in 2023 were infected at least a year or two earlier and had what’s called latent TB, when the bacteria enters the body and hibernates in the lungs or other parts of the body. Experts estimate as many as 13 million Americans have latent TB and are not contagious.
When the immune system is weakened—by certain medications or other illnesses like diabetes and HIV—the TB wakes up, so to speak. Nicole Skaggs said she was infected in 2020, but didn’t develop symptoms until 2022—after she got sick from COVID-19.
“Anything that can take out or lower your immune system can put you at risk,” said Skaggs, 41, a property manager in Bothell, Washington.
CDC officials called the idea that COVID-19 has played a role in increased reactivation of TB “an important question.” Scientists are still learning what causes latent TB to reactivate and “I would consider it an unknown at this point,” LoBue said.
“It’s too early to tell” what will happen to TB trends in the next few years, he also said.
There are TB vaccines being developed, and public health workers that were focused on COVID are now back to trying new approaches to preventing TB. New York City, which saw cases jump 28% last year, is hiring TB case managers and community health workers and increasingly using video monitoring of patients taking medications to keep treatment rates high, said Dr. Ashwin Vasan, the city’s health commissioner.
On the other hand, federal TB funding for state and local health department efforts has been flat, and one of the key antibiotics used against TB has been in short supply in recent years. Plus, drug-resistant TB infections have popped up in a fraction of cases.
NEW YORK — U.S. health officials are warning of an increase in rare bacterial illnesses than can lead to meningitis and possible death.
The Centers for Disease Control and Prevention issued an alert to U.S. doctors on Thursday about an increase in cases of one type of invasive meningococcal disease, most of it due to a specific strain of bacteria.
Last year, 422 cases of it were reported in the U.S.—the most in a year since 2014. Already, 143 cases have been reported this year, meaning infections appear to be on track to surpass 2023, the CDC said. Most of the cases last year did not involve meningitis, though at least 17 died. The cases were disproportionately more common in adults ages 30 to 60, in Black people and in people who have HIV, the CDC said.
The bacteria can cause a dangerous brain and spinal cord inflammation called meningitis, with symptoms that may include fever, headache, stiff neck, nausea, and vomiting. The bacteria also can cause a bloodstream infection with symptoms like chills, fatigue, cold hands and feet, rapid breathing, diarrhea, or, in later stages, a dark purple rash.
The infection can be treated with antibiotics, but quick treatment is essential. An estimated 10% to 15% of infected people die, and survivors sometimes suffer deafness or amputations.
There also are vaccines against meningococcal disease.
Officials recommend that all children should get a meningococcal conjugate vaccine, which protects against the rising strain, at around the time they enter a middle school. Since vaccine protection fades, the CDC also recommends a booster dose at age 16. Shots also are recommended for people at higher risk, like those in a place where an outbreak is occurring or those with HIV infection or certain other health conditions.
Health officials in Puerto Rico have identified 549 cases of dengue across the U.S. territory of 3.2 million people, with almost half the cases concentrated in the capital of San Juan. Also known as “breakbone fever,” dengue can cause headaches, soreness, fever and rashes—and, in extreme cases, death.
“This year, cases of dengue have surpassed historical records,” Health Secretary Carlos Mellado said in a statement.
The emergency declaration has no immediate impact on travel to or from Puerto Rico, a popular holiday destination, but it will make it easier for the health department to access funding for detection and prevention, Mellado said.
There have been major outbreaks of dengue this year across large swathes of the Americas, including Argentina, Uruguay, Brazil and Peru. Last year, parts of Florida were put under a mosquito-borne illness alert due to dengue.
The Global Initiative for Chronic Obstructive Lung Disease, or GOLD, is the world’s preeminent COPD research and advocacy organization. Founded in 1997 in collaboration with the U.S. National Institutes of Health and the World Health Organization, one of GOLD’s stated aims is to “improve prevention and treatment of this lung disease.”
In its 2023 global strategy report, GOLD changed its definition of COPD—which many in the profession viewed as overdue. Specifically, the new definition emphasized the heterogeneity of COPD in terms of its underlying drivers and long-term disease course.
“If you look at the new GOLD guidelines, they’re really acknowledging that there’s more of an inflammatory component to COPD than we initially thought,” says Dr. Laren Tan, a pulmonary disease and critical care specialist and chair of the Department of Medicine at Loma Linda University Health in California.
Tan says the recognition that COPD can take unconventional forms is crucial to tailoring appropriate care to the individual patient. “We’re now approaching COPD in terms of trying to identify subgroups of patients that have this underlying inflammatory state,” he says. “If we don’t uncover this inflammatory component, that can lead to worse outcomes.”
Here, Tan and other experts in the field describe how this new understanding of inflammation is informing treatment. And it’s just one of several recent advances in COPD care and management. From innovative new lung valves to refinements in the deployment of inhaled therapies and vaccines, the landscape of COPD care and treatment is changing.
The newest drug therapies
Arguably the most buzzed about advancement in the COPD treatment landscape is the emergence of new biologic therapies, says Dr. Meilan Han, a professor of medicine in the Division of Pulmonary and Critical Care at the University of Michigan. Biologics are injected medications derived from living cells or other biologic material that are able “to target very specific immune pathways,” Han explains.
Essentially, these drugs are intended to narrowly shift or block the operation of the immune system, thereby switching off or moderating the types of inflammation or other immune reactions that drive some COPD exacerbations while simultaneously leaving the remainder of the immune system unaffected. The drugs are already used to treat related pulmonary conditions, like asthma, and there’s reason to believe they’re about to enter the COPD arena.
“The exciting news is that there is a drug that looks like it will work for COPD, and that may soon have [U.S. Food and Drug Administration] approval,” Han says. That medication, dupilumab, is already approved for the treatment of asthma. In July 2023, a study published in the New England Journal of Medicine found that patients with so-called Type 2 inflammation—defined by the elevated presence of blood eosinophils—benefited from dupilumab. The patients experienced “fewer exacerbations, better lung function and quality of life, and less severe respiratory symptoms than those who received placebo,” the study found.
“What we’d seen in the last few years prior to this was that companies were fleeing respiratory drug development because a lot of studies had failed,” Han explains. “Dupilumab is just one drug, but it opens up the door for a lot more research and exploration of biologics for the treatment of COPD.” She notes that there are multiple trials examining additional biologics that target new pathways. “I’m hoping this is just the tip of the iceberg, and soon we’ll have many more new therapies,” she adds.
While biologics are garnering the most attention, experts say that smaller, more incremental improvements in care are having a greater impact on the day-to-day lives of COPD patients.
For example, phosphodiesterase inhibitors have long been used to help treat the mucous production and accumulation that so many COPD patients experience, Tan says. “The new phosphodiesterase inhibitors help relax airway smooth muscle and also help to clear out mucus from airways,” he says. “But patients take this as a tablet, which unfortunately comes with a lot of side effects, such as GI issues.” To prevent these side effects and improve the drug’s efficacy, researchers have looked into the development of inhalable forms of these drugs, and Tan says there’s promising data that these work.
Staying in the inhaler space, one of the greatest challenges in COPD care—and, for that matter, in the care of asthma and other lung conditions—is the problem of poor patient adherence to medications. Inhalers are often a mainstay of symptom management, but it can be a struggle for people to use an inhaler consistently, especially when treatment involves more than one type of inhaled drug.
This problem of adherence led to the development of combination inhalers—a single device that allows a patient to take two or even three medications simultaneously. “They’ve taken all these inhalers and put them into one device,” Han says. “This makes it easier for patients to take their medications, and this has led to a reduced frequency of exacerbations.”
In parallel with the emergence of combination inhalers, research has revealed that, for some COPD patients, the blend of three inhaled medicines may be superior to the old two-drug approach. “For most patients, we prescribe two long-acting bronchodilators,” says Dr. Peter Barnes, a professor of thoracic medicine at the National Heart and Lung Institute in the U.K. These are a long-acting muscarinic antagonist, or LAMA, coupled with a long-acting β2-agonist, or LABA. While this LABA/LAMA combination is nothing new, Barnes says that adding a third medicine—an inhaled corticosteroid—has proven helpful in patients with high blood levels of eosinophils. “These three can now be combined in single inhaler, called a triple inhaler,” he says.
Plus, some of the first research studies on the long-term benefits of these triple inhalers have found that they may reduce mortality among patients who use them. “When used appropriately in combination, these drugs can save lives,” Han says.
Lung volume reduction surgery, or LVRS, is one of the most common surgical procedures for the treatment of COPD. The procedure, which has been around since the 1950s, involves the removal of the most diseased parts of lung tissue in order to allow better, less-restricted lung expansion during breathing. “When you take that diseased part out, that helps to restore the lung’s natural mechanics,” Han says.
But this surgery comes with downsides. “It’s a major surgery with a long recovery time, and the risk for complications is high,” Tan says. These complications include unintended air leakages, pneumonia, and heart issues such as arrhythmias.
In just the past few years, a new and milder intervention has emerged. Two different companies have developed valves that can be placed in the airway using a minimally invasive procedure, and that allow trapped air to escape the damaged lung. “These are essentially a one-way valve that allows air to go out of the affected areas of the lungs,” Tan explains. “This helps improve ventilation and breathlessness.” The procedure, known as bronchoscopic lung volume reduction, mimics the effects of the older surgery, but is reversable.
Aside from new drugs and surgical procedures, vaccines are another area that should lead to better symptom management. “With COPD, a lot of common viruses—things like respiratory viruses—can contribute to periodic flare-ups or exacerbations,” Han says. Vaccines can help prevent these viral infections, and more are becoming available all the time. “The ramp-up of vaccine development we saw during the pandemic—I’m hopeful we’ll continue to see new vaccines for things like rhinovirus that have a major impact on COPD,” she says.
Experts say there have also been helpful advances in the way COPD patients and their care providers interact.
“Pulmonary rehab doesn’t get much buzz, but we know it’s critical for a patient’s daily functioning,” Tan says. Pulmonary rehab often involves group education courses that teach people with COPD how to adjust their lifestyles—for example, by incorporating safe forms of exercise, or learning to prepare healthier meals—in order to improve their symptoms and functionality.
Unfortunately, reimbursement and insurance coverage for pulmonary rehab is poor. Plus, attending the group sessions can be difficult or inconvenient for people who don’t live close to their center of care. “But during the pandemic, we found that we can offer pulmonary rehab remotely through telehealth, and I think that’s been a gamechanger,” Tan says. While many of those pandemic-era telehealth programs have since been suspended, they acted as a proof-of-concept—a demonstration that pulmonary rehab courses can be offered virtually—that Tan hopes will eventually increase access and reduce costs for people with COPD.
Smoking cessation is another area that has witnessed some noteworthy advancements, Tan says. A majority of COPD patients are current or former smokers, and a lot have trouble quitting despite the help of medications and patches or other nicotine-replacement aids. “Now we’re starting to see people using an AI-powered app to help them quit,” he says.
Earlier this year, the Fred Hutchinson Cancer Center launched a free QuitBot AI app. The app offers personalized smoking cessation support—answering questions and providing evidence-based pre- and post-quit-date education materials—that can help people stick with it.
Meanwhile, researchers at Johns Hopkins University have found that combining psychedelics with cognitive behavioral treatments can lead to remarkable cessation rates. One study found that 80% of people were able to stay cigarette-free six months after the treatment—an unheard-of success rate for smoking cessation therapies.
In many branches of medicine, researchers and providers have turned their attention to better, more comprehensive diagnostics. With the help of advanced genetic testing, blood analyses, and other cutting-edge assessment tools, doctors can get a clearer picture of a patient’s underlying disease state, which can guide them toward the most efficacious and precise treatments—and, as a result, improving outcomes and reducing side-effects or other quality-of-life challenges.
This, experts say, is where COPD care is headed. “We know now there are multiple subtypes of COPD—that the inflammatory sub-profile differs from patient to patient,” Tan says. “But the inflammatory process is extremely complex.” It will take time to map the different inflammatory pathways and processes at play, and years of work to identify or develop new medicines that treat those specific instigators of inflammation. But all of this is underway. And, as the latest research on biologics suggests, this form of precision medicine is going to be part of the COPD conversation for a long time to come.
“I’ve been doing this for 20 years, and this is the first time I feel like we’re at an inflection point where I’m anticipating a lot of new therapies within the next five years,” Han says.
For people with COPD—and their care providers—the future looks bright.
Last year, cases of measles—a serious, vaccine-preventable disease that’s highly contagious—jumped by 79% around the world. Most of them were in children. That trend is continuing this year, threatening to reverse an impressive 73% drop in measles deaths worldwide from 2000 to 2018.
Cases in the U.S. are climbing, too. In just the first two months of 2024, 35 cases have already been reported in 15 states including California, Minnesota, Florida, New York, and Louisiana; in 2023, 58 cases were reported over the entire year.
Why are measles cases taking off, and how can people protect themselves?
Why measles cases are climbing
Not enough kids are getting vaccinated. For herd immunity, about 95% or more of a population needs to be vaccinated, but most countries around the world have been below that threshold for years. By 2019, 86% of kids worldwide had been vaccinated with a dose by their second birthday, but that number dropped even further to 81% in 2021. (The measles vaccine is given in two doses: one at a year, the next at age 4-6.)
Vaccination rates in the U.S. are declining, too, and vaccination exemption rates are creeping up. CDC data show that 93% of kindergarteners were vaccinated against measles during the 2021-22 school year
Vaccinating more children is the best way to prevent new outbreaks. The vaccine, which has been around since the 1960s, is given as a combination shot that also includes protection against mumps and rubella. One dose is 93% effective against measles, and two doses are 97% effective. “The science really supports the safety and effectiveness of vaccinations,” says Dr. Katherine Baumgarten, medical director for infection control and prevention at Ochsner Health in New Orleans. However, “we know there is a lot of distrust in vaccines, and that’s a shame. If vaccination rates continue to decline, then we will see more of the diseases that we had hoped to completely eliminate.”
How measles spreads
Measles is one of the most contagious diseases on the planet. It spreads through the air, by infectious droplets, and on surfaces. “If a person has not been exposed or vaccinated, then they generally get infected if they are exposed 90% of the time,” Baumgarten says. Measles can cause a rash, high fevers, and even brain swelling and death.
Cases pose a particular threat to people who can’t get vaccinated, such as babies less than a year old, people who have weakened immune systems due to medical conditions or transplant surgeries, and pregnant women—even if they’ve been vaccinated—since their immune systems are more susceptible while they are expecting. “If [people with measles] come to a doctor of hospital for care and are in a waiting room with other patients, they may expose other people,” Baumgarten says.
Measles cases had started climbing in 2019, but they dropped significantly in 2020, when much of the world went into lockdown and adopted stricter public health prevention measures, such as wearing masks and practicing social distancing. Those behaviors make it harder for any virus, including measles, to spread. It’s also possible that following the surge in cases in 2019, more of the world’s children became immune because they had contracted the infection, and therefore fewer were susceptible to the disease.
But lockdowns also interrupted kids’ vaccinations. As health resources shifted to controlling the pandemic, vaccination programs around the world were put on hold. The World Health Organization (WHO) estimates that 22 million children missed the first dose of their measles vaccine in 2022, most likely due to disruption caused by COVID-19.
Many of those kids still aren’t immunized. Some countries have strict programs for vaccinating kids at specific ages, so if child misses their window, they may find it hard to get immunized later on. “We do have more susceptible children globally, so outbreaks could get bigger and more frequent,” says Dr. William Moss, executive director of the International Vaccine Access Center at Johns Hopkins Bloomberg School of Public Health. “For an outbreak, you need two things: a susceptible pool of people, mostly children, and introduction of the virus.”
Outbreaks tend to originate elsewhere—but experts are still worried
There doesn’t seem to be a reservoir of virus endemic to the U.S. that’s seeding new cases. Most outbreaks in various states start when a person contracts measles during travel, then returns home.
But that scenario is still concerning, especially for communities where measles vaccination coverage is lower due to growing anti-vaccine sentiment or religious reasons for avoiding immunizations. In those areas, a susceptible population plus introduction of the measles virus could spawn a cluster of cases, Moss says.
Broadbent never stopped speaking out about the virus and disease — and Johnson thanked her for her courage.
A leading activist in HIV/AIDS awareness, Broadbent, who was born with HIV, died Wednesday at age 39, her father said in a Facebook post. The cause of death was not specified.
“With great sadness, I must inform you all that our beloved friend, mentor and daughter Hydeia, passed away today after living with AIDS since birth,” Loren Broadbent wrote. “Despite facing numerous challenges throughout her life, Hydeia remained determined to spread hope and positivity through education around HIV/AIDS.”
Johnson took to X (formerly Twitter) on Wednesday to pay tribute to his longtime friend. His post included a video clip of their interaction on “Nick News with Linda Ellerbee” as well as photos of the two of them together in the years since then.
AIDS Healthcare Foundation President Michael Weinstein, left, Hydeia Broadbent and Magic Johnson attend the premiere of ESPN Films’ “The Announcement” on March 6, 2011, in Los Angeles.
(Joe Kohen / Associated Press Images For Aids Healthcare Foundation)
“I’m devastated to hear about the passing of an incredible young woman, activist and hero Hydeia Broadbent,” Johnson wrote. “In 1992, I did a Nickelodeon special called ‘A Conversation with Magic’, and 7-year-old Hydeia and I made an incredible impact. Hydeia changed the world with her bravery, speaking about how living with HIV affected her life since birth. She dedicated her life to activism and became a change agent in the HIV/AIDS fight.
“By speaking out at such a young age, she helped so many people, young and old, because she wasn’t afraid to share her story and allowed everyone to see that those living with HIV and AIDS were everyday people and should be treated with respect. Thanks to Hydeia, millions were educated, stigmas were broken, and attitudes about HIV/AIDs were changed. We will miss her powerful voice in this world. Cookie and I are praying for the Broadbent family and everyone that knew and loved Hydeia.”
Broadbent was abandoned as a newborn at a Las Vegas hospital and adopted by her parents, Loren and Patricia, as an infant. They didn’t know that Broadbent was born with HIV until she got seriously ill at 3. At that age, she was diagnosed as HIV-positive, and two years later, the virus developed into AIDS. Her biological mother was an intravenous drug addict.
Broadbent’s public speaking career began when she was 6. Soon after, in March 1992, Broadbent was one of 13 children who appeared with Johnson and Ellerbee on Nickelodeon after Johnson shocked the world with his HIV announcement in November 1991.
Broadbent was one of two children who raised their hands when Ellerbe asked if any of them were HIV-positive. Her “normal people” comment was the only sentence she uttered during the program.
Immediately after speaking, Broadbent started wiping away tears, then broke down sobbing. Johnson rubbed her back and spoke to her in a soothing tone.
“You don’t have to cry,” he said. “‘Cause we are normal people. OK? We are. You just wanna be treated like that, right? You just want your friends to play with you? And call you up and come by and still have sleepovers and things like that? Right? Yeah. And it’s OK to cry, it’s OK to cry. You know, I think that you — with this program I feel that we’ll be able to educate all your friends and everybody else.”
Broadbent would end up having plenty more to say over the next 32 years.
At age 11, she told Oprah Winfrey the worst part of having HIV/AIDS was “when your friends die.” Speaking at the 1996 Republican National Convention, a 12-year-old Broadbent said, “I am the future, and I have AIDS.”
AIDS activist Mary Fisher kisses 12-year-old Hydeia Broadbent as they address the evening session of the 1996 Republican National Convention in San Diego.
(Ron Edmonds / Associated Press)
Broadbent continued her advocacy as an adult — making appearances, doing interviews and giving lectures. She also worked with the AIDS Healthcare Foundation on several AIDS advocacy and awareness campaigns, riding on the foundation’s float in the 2013 Rose Parade and appearing in AHF’s “God Loves Me” billboard campaign.
“I try to tell it as real as I can, that this isn’t a disease they want,” Broadbent told CNN in 2012. “The current generation, they don’t know the reality of HIV/AIDS. They look at me and Magic Johnson and think you can pop a pill and be OK. They don’t know the seriousness of the disease. They don’t know the side effects of the medicine. They don’t know the financial realities of the situation.
NEW YORK — Lyme disease cases in the U.S. jumped nearly 70% in 2022, which health officials say is not due to a major increase of new infections but instead a change in reporting requirements.
Reported cases surpassed 62,000 in 2022, after averaging about 37,000 a year from 2017 through 2019, the Centers for Disease Control and Prevention said in a report released Thursday. Numbers for 2023 will be released later this year.
Lyme disease is the most common tick-borne infection in the U.S., occurring mostly in the Northeast, Midwest and mid-Atlantic states.
An estimated 476,000 Americans are diagnosed with it each year, but only a fraction are officially reported.
Traditionally, health departments received positive lab tests and went back to doctor’s offices to gather more information about the patients. But reporting fell off in 2020 and 2021 when health department staffers were busy working on COVID-19.
Starting in 2022, all that’s required to report cases—at least in high-incidence states—is a positive lab test. It’s possible that better, more sensitive testing is being used more and that may have contributed to the increase, but it’s too early to tell, CDC officials said.
