February is American Heart Month and some Minnesota families are sharing their experiences with a sometimes overlooked disease among newborns: congenital heart defects.

Studies show congenital heart defects are the most common birth defect in the U.S., affecting nearly 40,000 babies each year. The American Heart Association said thanks to progress in the world of research and treatments, outcomes have improved. But families still find themselves in delicate situations.

Stephanie Johnson is a Minnesota mother whose son Henry was born with a syndrome restricting oxygen supplies to the body. Henry endured several surgeries and now lives a mostly normal life like kids his age but the worry is not over.

"We also know that the honeymoon period doesn't last forever," Johnson acknowledged. "At some point his heart's gonna get tired and he'll be looking at likely a heart transplant at that point."

Johnson hopes for additional medical breakthroughs but she and health experts noted congenital heart defect research is grossly underfunded. Another complication is government spending cuts sought by the Trump administration and the potential impact on agencies such as the National Institutes of Health. Policy experts say the research arm has already been dealing with flat funding levels.

In the absence of government support, current research heavily relies on awareness campaigns involving families navigating health scares. Johnson is among those trying to get the issue on the public's radar.

"We need to move science forward," Johnson urged. "Creating awareness for this is just incredibly important because awareness leads to funding, and funding leads to hope, and we're hoping for a cure."

Studies indicate congenital heart defects are underdiagnosed because milder symptoms are not always caught at birth. It means the disease is detected later in childhood or when the person becomes an adult.

Minnesota's Mayo Clinic and its HeartWorks program, as well as the Heart Association, are part of a network of health entities pushing for research advancements.

Patient's rights advocates are working to restrict huge fees some Washington patients must pay in order to access their complete medical records.

Holly Brauchli, managing partner at Sears Injury Law in Seattle, said navigating the medical system is complex and often requires support from lawyers or other advocates. But Brauchli noted once patients secure an advocate they can face huge fees for their records. One client was charged $28,000 by health data firm Datavant.

Brauchli pointed out the fees can prevent sick or injured patients from quickly accessing the records they need for legal claims and other urgent matters.

"To navigate things like whether a protective order should be issued to someone who has suffered from domestic violence, or whether a breast cancer battler should be able to get FMLA leave," Brauchli outlined.

Legislation to limit fees was introduced in Olympia this session but did not pass. Advocates plan to reintroduce it next session. While federal law supports patients, Brauchli argued companies like Datavant exploit loopholes in state regulations to impose high fees.

Brauchli noted Datavant contended getting complete medical records can be complicated because they have to dig through microfiche. She countered it is a poor excuse, adding records starting in 2016 are all digital and people rarely need records before then. There are large providers in the state, like University of Washington, added Brauchli, who charge much less.

"When they issue tens of thousands of pages of patient bills, they charge something reasonable, like 20 bucks," Brauchli stressed.

Providers like Datavant, Brauchli explained, charge patients about $1 per page of a PDF. She said a one-week hospital stay could easily create 15,000 pages of records.


get more stories like this via email

Some Kentucky lawmakers want to make it mandatory for some Medicaid participants in Kentucky to work, but experts say that would disproportionately affect people with mental health or substance use disorders.

House Bill 695 would require able-bodied adults with no dependents to work - and prove it - to receive health care.

Kentucky currently has a voluntary program, with job training and opportunities for community engagement, but Emily Beauregard - executive director of Kentucky Voices for Health - explained it isn't required for Medicaid eligibility.

"The majority of Kentuckians with Medicaid coverage are already working," said Beauregard. "They're working full time, part time. They're students, they're caregivers, taking care of children or older family members, people with disabilities."

Supports of work requirements argue the current system incentivizes people not to work, and argue the change will help alleviate staffing shortages.

Meanwhile, Congress is considering deep cuts to Medicaid, around $880 million over the next decade.

Groups like the Kentucky Center for Economic Policy say that would disproportionately affect Kentucky, which is one of the top ten states for the share of its population covered by Medicaid.

Valerie Lebanion teaches local parenting classes in Whitley County. She said most of her clients rely on Medicaid for health coverage.

She said she believes increased red tape around the program would end up hurting families.

"When moms and dads are sick, they can't take care of their children," said Lebanion. "They can't take their children to school, get their children off to where they need to be, or even to take care of their children."

Beauregard said the state would also end up paying more for the administrative work needed to track and document mandatory work requirements.

"It doesn't make sense economically," said Beauregard, "and it puts an additional burden on hard-working Kentucky families who are doing everything right and end up falling through paperwork cracks."

A recent poll from the health policy and research organization KFF found 96% of participants said Medicaid is either important or very important to their community - and 82% said lawmakers should leave Medicaid spending unchanged or increase funding.

Tensions are rising in Ohio between doulas and the state Board of Nursing, as only a small number of doulas have been able to be certified for Medicaid reimbursement - despite a statewide push to reduce infant mortality.

More than 60,000 births in Ohio each year are covered by Medicaid. Research shows having a doula can lower risks for both moms and babies.

But only 132 doulas statewide are certified to receive Medicaid payments.

Dr. Marie McCausland, who chairs the state's Doula Advisory Group, said to meet the demand, about 3,000 need to be certified.

But she contended the certification process has been anything but collaborative - and called it "top-down and exclusionary."

"Day one, the first meeting, they already had almost all the rules written," said McCausland. "They sent it to us and we were supposed to start there, versus any sort of collaborative writing of the rules."

She said she recently discovered she's being removed as chair after a quiet legislative change that stripped doulas of their ability to lead the advisory group, effective April 9.

The Ohio Board of Nursing said in a statement the leadership change was made for consistency with other professions.

But McCausland said even doulas serving non-Medicaid families are sometimes being turned away, because they don't hold the new certification.

Guillermo Bervejillo, research manager with Children's Defense Fund Ohio, said the governor made doula access a priority, but the Board of Nursing may be undermining that effort.

"Gov. DeWine made it a priority to reduce infant mortality, especially amongst Black children," said Bervejillo. "He created a doula advisory group. The doula advisory group has faced obstacle after obstacle. It's been kind of wild. It feels like the governor doesn't even know what's going on."

McCausland said there also are concerns about racial bias and representation.

She said Black voices on the advisory group have been ignored, even scrubbed from official meeting records - prompting the group to hire a court reporter.

"Doulas are happy to come into hospital systems and work with doctors and nurses," said McCausland. "We want to be able to work as a team for our client success."

The Board of Nursing says it values the input of doulas and that the advisory group includes health professionals from a range of backgrounds.

The board says it is committed to improving maternal health outcomes and continuing to refine the certification process.