September is Sickle Cell Awareness Month, a time when doctors and patient advocates hope to spread awareness of a complex and often misunderstood medical condition.

Sickle cell anemia is a genetic disorder that causes red blood cells to have a sickle or crescent shape, leaving patients in a chronic state of anemia. Regular blood transfusions are a key treatment for the condition.

Dr. Maa-Ohui Quarmyne, a pediatric hematologist at Phoenix Children's Hospital, said despite a commonly held belief, the condition is not limited to Black people.

"Sickle cell disease has generally been associated with people of African descent or African Americans," she said, "but it's also found in Asian, European descent, Indian descent, and even people from the Mediterranean."

Quarmyne said the genetic condition is present at birth and is inherited through a gene from both parents. According to the Centers for Disease Control and Prevention, it affects as many as 100,000 people across the United States and occurs in one out of every 365 African Americans.

Sickle cell disease is considered to be both persistent and insidious. If it goes untreated, Quarmyne said, it can bring debilitating complications and even death at an early age.

"It affects almost every organ in the body," she said, "and it can be quite an unrelenting disease, so that even patients who on the outside look well can have ongoing organ damage."

Quarmyne said blood transfusions are crucial to relieving the symptoms of sickle cell, and there is an urgent need for blood donors, from a wide variety of races and ethnicities.

"It is ideal to have diversity in the donor pool, especially when you have sickle cell populations," she said, "because a lot of patients tend to be minority patients."

She said new drugs and bio-technologies - including gene therapy and genetically modified stem cells - are bringing better outcomes, but researchers have yet to find a cure.

To donate blood, contact your local blood bank or go online to AmericasBlood.org.

By Jazmin Orozco Rodriguez for KFF Health News.
Broadcast version by Kathleen Shannon for Greater Dakota News Service reporting for the KFF Health News-Public News Service Collaboration

Natalie Holt sees reminders nearly everywhere of the serious toll a years-long syphilis outbreak has taken in South Dakota. Scrambling to tamp down the spread of the devastating disease, public health officials are blasting messages to South Dakotans on billboards and television, urging people to get tested.

Holt works in Aberdeen, a city of about 28,000 surrounded by a sea of prairie, as a physician and the chief medical officer for the Great Plains Area Indian Health Service, one of 12 regional divisions of the federal agency responsible for providing health care to Native Americans and Alaska Natives in the U.S.

The response to this public health issue, she said, is not so different from the approach with the coronavirus pandemic — federal, state, local, and tribal groups need to “divide and conquer” as they work to test and treat residents. But they are responding to this crisis with fewer resources because federal officials haven’t declared it a public health emergency.

The public pleas for testing are part of health officials’ efforts to halt the outbreak that has disproportionately hurt Native Americans in the Great Plains and Southwest. According to the Great Plains Tribal Epidemiology Center, syphilis rates among Native Americans in its region soared by 1,865% from 2020 to 2022 — over 10 times the 154% increase seen nationally during the same period. The epidemiology center’s region spans Iowa, Nebraska, North Dakota, and South Dakota. The center also found that 1 in 40 Native American and Alaska Native babies born in the region in 2022 had a syphilis infection.

The rise in infections accelerated in 2021, pinching public health leaders still reeling from the coronavirus pandemic.

Three years later, the outbreak continues — the number of new infections so far this year is 10 times the full 12-month totals recorded in some years before the upsurge. And tribal health leaders say their calls for federal officials to declare a public health emergency have gone unheeded.

Pleas for help from local and regional tribal health leaders like Meghan Curry O’Connell, the chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation, preceded a September letter from the National Indian Health Board, a Washington, D.C.-based nonprofit that advocates for health care for U.S. tribes, to publicly urge the Department of Health and Human Services to declare a public health emergency. Tribal leaders said they need federal resources including public health workers, access to data and national stockpile supplies, and funding.

According to data from the South Dakota Department of Health, 577 cases of syphilis have been documented this year in the state. Of those, 430 were among Native American people — making up 75% of the state’s syphilis cases, whereas the group accounts for just 9% of the population.

The numbers can be hard to process, O’Connell said.

“It’s completely preventable and curable, so something has gone horribly wrong that this has occurred,” she said.

The Great Plains Tribal Leaders’ Health Board first called on HHS to declare a public health emergency in February. O’Connell said the federal agency sent a letter in response outlining some resources and training it has steered toward the outbreak, but it stopped short of declaring an emergency or providing the substantial resources the board requested. The board’s now months-old plea for resources was like the recent one from the National Indian Health Board.

“We know how to address this, but we do need extra support and resources in order to do it,” she said.

Syphilis is a sexually transmitted infection that can result in life-threatening damage to the heart, brain, and other organs if left untreated. Women infected while pregnant can pass the disease to their babies. Those infections in newborns, called congenital syphilis, kill dozens of babies each year and can lead to devastating health effects in others.

Holt said the Indian Health Service facilities she oversees have averaged more than 1,300 tests for syphilis monthly. She said a recent decline in new cases detected each month — down from 92 in January to 29 in September — may be a sign that things are improving. But a lot of damage has been done during the past few years.

Cases of congenital syphilis across the country have more than tripled in recent years, according to the Centers for Disease Control and Prevention. In 2022, 3,700 cases were reported — the most in a single year since 1994.

The highest rate of reported primary and secondary syphilis cases in 2022 was among non-Hispanic American Indian or Alaska Native people, with 67 cases per 100,000, according to CDC data.

O’Connell and other tribal leaders said they don’t have the resources needed to keep pace with the outbreak.

Chief William Smith, vice president of Alaska’s Valdez Native Tribe and chairperson of the National Indian Health Board, told HHS in the organization’s letter that tribal health systems need greater federal investment so the system can better respond to public health threats.

Rafael Benavides, HHS’ deputy assistant secretary for public affairs, said the agency has received the letter sent in early September and will respond directly to the authors.

“HHS is committed to addressing the urgent syphilis crisis in American Indian and Alaska Native communities and supporting tribal leaders’ efforts to mobilize and raise awareness to address this important public health crisis,” he said.

Federal officials from the health department and the CDC have formed task forces and hosted workshops for tribes on how to address the outbreak. But tribal leaders insist a public health emergency declaration is needed more than anything else.

Holt said that while new cases seem to be declining, officials continue to fight further spread with what resources they have. But obstacles remain, such as convincing people without symptoms to get tested for syphilis. To make this easier, appointments are not required. When people pick up medications at a pharmacy, they receive flyers about syphilis and information about where and when to get tested.

Despite this “full court press” approach, Holt said, officials know there are people who do not seek health care often and may fall through the cracks.

O’Connell said the ongoing outbreak is a perfect example of why staffing, funding, data access, and other resources need to be in place before an emergency develops, allowing public health agencies to respond immediately.

“Our requests have been specific to this outbreak, but really, they’re needed as a foundation for whatever comes next,” she said. “Because something will come next.”


Jazmin Orozco Rodriguez wrote this story for KFF Health News.


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By Kate Ruder for KFF Health News.
Broadcast version by Eric Galatas for Colorado News Connection reporting for the KFF Health News-Public News Service Collaboration

During cheerleading practice in April, Jana Duey’s sixth grade daughter, Karter, sustained a concussion when she fell several feet headfirst onto a gym floor mat. Days after, Karter still had a headache, dizziness, and sensitivity to light and noise.

Karter rested for a week and a half at home in Centennial, Colorado, then returned to school when her concussion symptoms were tolerable — initially for just half-days and with accommodations allowing her to do schoolwork on paper instead of a screen and take extra time to get to and from classes. Karter went to the nurse’s office when she had a headache, Duey said. She began physical therapy to rehab her neck and regain her balance after the accident left her unsteady on her feet.

After children get concussions, a top concern for them and their parents or caregivers is when they can go back to sports, said Julie Wilson, Karter’s doctor and a co-director of the Concussion Program at Children’s Hospital Colorado in Aurora. Returning to school as quickly as possible, with appropriate support, and getting light exercise that doesn’t pose a head injury risk are important first steps in concussion recovery, and in line with the latest research.

“It’s really important to get children and teens back to their usual daily activities as soon as possible, and as soon as they can tolerate them,” Wilson said.

In August, the Colorado Department of Education updated guidelines dispelling common myths about concussions, such as a loss of consciousness being necessary for a concussion diagnosis. The revised guidelines reflect evidence-based best practices on how returning to school and exercise can improve recovery. Educating families and schools about the new guidelines is critical, according to medical experts, particularly during autumn’s uptick in concussions from sports such as football and soccer.

More than 2 million children nationwide had been diagnosed at some point with a concussion or brain injury, according to the 2022 National Health Interview Survey. A flurry of studies in the past decade have shown that adolescents recover more quickly from concussions and decrease the risk for prolonged symptoms by exercising lightly, for example on a stationary bike or with a brisk walk, two days after a concussion. That time frame may also be the sweet spot for getting back to the classroom, as long as the kids can tolerate any remaining concussion symptoms.

“Even though the brain is not a muscle, it acts like one and has a use-it-or-lose-it phenomenon,” said Christina Master, a pediatrician and sports medicine and brain injury specialist at Children’s Hospital of Philadelphia.

Instead of waiting at home to fully recover, Master said, students should return to school with extra support from teachers and breaks in their schedule to relieve symptoms such as headaches or fatigue, with a goal of gradually doing more.

Every state has return-to-play laws for student-athletes that include policies such as removal from sports, medical clearance to return, and education about concussions. While some states, such as Virginia and Illinois, have “return-to-learn” policies, Colorado is not among them. It and 15 other states have community-based concussion management protocols.

That is what Colorado updated this summer. REAP — which stands for Remove/Reduce; Educate; Adjust/Accommodate; and Pace — is a protocol for families, health care providers, and schools to help students recover during the first four weeks after a concussion. For example, school personnel can use an email-based system to alert teachers that a student sustained a concussion, then send weekly updates with details about how to manage symptoms, like difficulty concentrating.

“We have new protocols to support these kiddos,” said Toni Grishman, senior brain injury consultant at the Colorado Department of Education. “They might still have symptoms of concussion, but we can support them.”

Symptoms of concussion resolve in most patients in the first month. However, patients with ongoing symptoms, called persistent post-concussive symptoms, can benefit from a multidisciplinary care team that may include physicians, physical therapists, psychologists, and additional school support, Wilson said.

David Howell, director of the Colorado Concussion Research Laboratory at the University of Colorado Anschutz Medical Campus, is studying how children and their families cope with the physical, cognitive, social, and emotional impacts of concussions. In some studies, adolescents wear sensors to measure exercise intensity and volume, as well as common symptoms of concussion, like sleep and balance problems. In others, children and their parents answer questions about their perceptions and expectations of the recovery process.

“What you bring to an injury is oftentimes exacerbated by the injury,” Howell said, citing anxiety, depression, or just going through a difficult time socially. Recovery can be influenced by peer and family relationships.

Duey said the most difficult part of Karter’s recovery was her not being able to participate in cheer for nine weeks, including her team’s final competition in Florida. Karter, now 12, watched practice and supported her teammates in the spring, but missing out tore her up inside, Duey said.

“There were a lot of tears,” Duey said.

While recognizing a concussion and acting quickly can help anyone, in practice, more than half of students in Colorado may slip through the cracks with undiagnosed concussions, according to Grishman’s estimates.

The reasons for missed diagnoses are many, Grishman said, including lack of education, barriers to medical care, parental reluctance to inform schools about a concussion for fear their child will be excluded from activities, or not taking symptoms seriously in a student with a history of behavioral issues.

Getting schools to follow concussion guidelines, in general, is a challenge, Grishman said, adding that some districts still do not. She said it was hard to track the number of schools that followed Colorado education department guidelines last year but hopes improved data collection will provide more specifics this year. During the past school year, Grishman and her colleagues trained 280 school personnel in concussion management across 50 school districts in Colorado.

Whenever possible, athletic trainers should be on the sidelines to support student-athletes, Master said, and athletes should be aware of concussion symptoms in themselves and their teammates and seek care right away.

But concussions are not limited to the school athletic field or sports like football or soccer. Adventure sports like parkour, slacklining, motocross, rodeo, skiing, and snowboarding also pose concussion risks, Wilson and Grishman said. “Cheerleading is actually one that has a lot of concussions associated with it,” Howell added.

Duey said Karter occasionally has headaches, but her balance returned with help from physical therapy and she no longer experiences symptoms of her concussion. She is back to flying with her cheerleading squad and preparing to compete.


Kate Ruder wrote this story for KFF Health News.


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By Sarah Varney for KFF Health News.
Broadcast version by Brett Peveto for Maryland News Connection reporting for the KFF Health News-Public News Service Collaboration

In the two counties around nurse practitioner Samantha Marsee's clinic in rural northeastern Maryland, there's not a single clinic that provides abortions. And until recently, Marsee herself wasn't trained to treat patients who wanted to end a pregnancy.

"I didn't really have a lot of knowledge about abortion care," she said.

After Roe v. Wade was overturned, she watched state after state ban abortion, and Marsee decided to take part in the first class of a new training program offered by the University of Maryland School of Medicine and the University of Maryland-Baltimore.

Marsee learned how to administer medication abortion pills, procedural abortions, and highly effective birth control methods, including hormonal implants and intrauterine devices.

She cares for patients with all sorts of everyday ailments and health conditions, including pregnancy. "I do have patients who come in for confirmation of pregnancies and then disclose they don't want to continue with the pregnancy for whatever reason," Marsee said.

Now, with her new training, she can help.

Expanding the pool of health care providers with reproductive health care skills outside of the state's urban centers is vital, said Mary Jo Bondy, associate dean of the School of Graduate Studies at the University of Maryland-Baltimore. She helped create the new training program.

In 2022, Maryland lawmakers passed the Abortion Care Access Act, expanding the type of medical care nurse practitioners, physician assistants, and certified nurse-midwives could offer, including abortion, and the training program "prioritized that group," Bondy said.

Those types of professionals have long provided abortions to rural patients in other states, Bondy said, and "we have proof that receiving this care from an advanced practice clinician is safe."

As many as 120 health care providers will be trained over the next two years. Some participants have said they are returning to communities that are hostile to abortion rights.

On Nov. 5, voters approved a ballot measure to protect reproductive rights in the Maryland Constitution, by an overwhelming margin, preliminary results show. The state is widely considered a safe haven for patients who live in states with abortion bans. The number of abortions in Maryland increased 29% from 2019 to 2023, driven largely by out-of-state residents. But one training participant, a family physician from the Eastern Shore, said providing abortions makes her concerned for her physical safety and asked not to be identified.

"The rural catchment and politics really drive it either out or at least into the quiet," she said of abortion availability where she lives. She worries that her employer will question the prescriptions she writes for medication abortion pills and said pharmacists often refuse to give the medication to her patients.

Even in Maryland, pharmacists are allowed to refuse to dispense medication abortion pills.

As more health care providers are trained in abortion care, they need help from the state's medical schools and health officials to overcome these barriers, the family physician said. She wants help with "access to medication and pushing in some ways the hand of our employers, or normalizing, 'This is just health care.'"

For Marsee, the next step is to figure out how to let her patients know she can provide abortions. She plans to tell her current patients and hopes they'll tell others.

"I'm working on a way to let people know that I'm here and can provide it," Marsee said. "This is a conservative area, so it's walking that line. I want people to know I'm here, but I don't want to cause too much outrage and attention."


Sarah Varney wrote this story for KFF Health News.


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