KANSAS CITY, Mo. – A relatively common but under-diagnosed childhood disease is getting special attention at a unique clinic in Kansas City.
Children's Mercy Hospital's Super Q Express clinic is named for the disease known as "22Q" which is seen at birth in the form of everything from heart defects to cleft palates and immune-system problems.
Super Q Express puts an array of specialists and even mental-health professionals in one place so parents of affected children have a one-stop hub to address their child's needs.
Clinic director Dr. Max Feldt says you probably haven't heard of 22Q but it occurs at nearly the same rate as Down Syndrome.
"Twenty-two-Q means that there's a change on the 22nd chromosome, and either there's a deletion - meaning that part of that genetic material is missing - or there's an extra piece," he explains.
Feldt says the Super Q Express clinic is now seeing patients from Missouri, Iowa, Kansas, Nebraska, Arkansas, Oklahoma, Texas and even California.
Feldt says no parent likes to hear that their child is sick, but he often finds that a definitive diagnosis can provide enormous relief. Plus, he notes, the all-encompassing services they're able to provide help families strategically and efficiently fight the disease.
Feldt says Super Q Express brings cardiology, immunology and a variety of other specialists together in a place where a medical coordinator can plan approaches with families. That, he says, makes a big impact.
"We can now start to be very proactive in terms of making sure that we're aware or screening for possible things that might happen in the near future or even in the distant future," says Feldt.
Because 22Q creates so many different challenges, it's often misdiagnosed until genetic testing is done.
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It's been one year since the largest health care strike in U.S. history, and union members say they've seen changes since their 2023 victory.
More than 85,000 workers at Kaiser Permanente in Oregon and four other states conducted a three-day strike in October 2023, and won a 21% wage increase over four years.
Keven Dardon is a patient access representative with a Kaiser Permanente Sunnyside Medical Center in Clackamas, and was a member of the negotiation team with Service Employees International Union Local 49 during the strike.
He said there were risks involved in the strike.
"This wasn't an easy decision for us," said Dardon. "It took a lot of time, planning and speaking - to not just our peers but our families - regarding what striking would mean to us and how, you know, it would affect our stance and our income to be able to do that for those three days."
Dardon said health care workers wanted to address the demand from the growing Portland region. SEIU Local 49 says members won the largest wage package in 25 years.
Dardon said the biggest concerns for workers were understaffing and turnover. He said they've teamed up with management to analyze the staffing needs of departments in their hospitals.
Dardon said more staff benefits patients.
"Ultimately, this means more availability to see providers," said Dardon, "and overall it's a huge victory for us because we're able to start getting the manpower that we need, to be able to meet the demand of the city and be able to really see our patients in a timely manner."
The Kaiser strike was among many strikes that took place last year, and have continued this year - such as with the recent longshoreman's strike. Dardon said the actions have been empowering to see.
"Companies are seeing record profits and we're the backbones of the company, right?" said Dardon. "We're the ones that show up every day on time, we do the work, we see the patients or we see the customers - and we deserve to be rewarded for the hard work and for the profits that these companies are earning."
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Experts warn health insurance premiums could rise an average of $1,000 a year for more than 2 million Californians who buy coverage on the individual marketplace, unless Congress extends subsidies from the Inflation Reduction Act.
The nonprofit Health Access California has federal data by congressional district.
Rachel Linn Gish, director of communications for the advocacy group, said for example, 140,000 people in the Central Valley alone benefit from the subsidies.
"As Congress is considering taking action to make these federal subsidies permanent, we want to make sure that Congress members know just how their constituents are going to be impacted by these health care decisions that they're about to make," Gish emphasized.
Linn Gish wants Congress to take up the issue soon because CoveredCA is working now to set rates for 2026. At a recent Senate Finance Committee hearing, Sen. Mike Crapo, R-Idaho, criticized the Inflation Reduction Act, which passed without a single Republican vote and said permanently extending the subsidies would contribute $325 billion to the federal deficit over 10 years.
A recent report from the University of California-Berkeley and the University of California-Los Angeles found enhanced tax credits through the Inflation Reduction Act save Californians $1.7 billion per year.
Gish pointed out the federal dollars have allowed state funds to flow toward programs to zero out deductibles and eliminate copays on many CoveredCA plans.
"If we lose the federal support for the premium help, then we may need to shift state dollars to backfill that," Gish cautioned. "Therefore consumers could also see spikes in their deductibles and other out-of-pocket costs for health care."
A recent study from UC Berkeley and UCLA predicted an additional 69,000 Californians could become uninsured due to increased premium costs if federal subsidies are allowed to expire next year.
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Montana's expanded Medicaid program is set to expire next year. People who rely on it are calling on lawmakers for an extension but opponents argued Medicaid was never meant to be a long-term option for most people.
The Montana Legislature voted during its last session to expand the state's Medicaid program to cover an additional 85,000 people.
Megan Martin, a small-business owner and mother in Helena who relies on Medicaid, said she is out of health care options if the state does not extend it.
"I have looked and have been told that I could get health care off of our federal marketplace, which I don't qualify for," Martin explained. "That's terrifying because I don't make a ton of money, being a small-business owner. So, not having any other option is scary."
Gov. Greg Gianforte has not been clear on whether he supports an expansion but has said Medicaid should be a temporary program to help people get back on their feet. Data from KFF Health News show 9% fewer Montanans are covered under Medicaid now than before the pandemic.
Montana's Medicaid expansion is largely funded under the federal Affordable Care Act but is administered by the state, which is why expansion takes a legislative vote. Martin pointed out like many Montanans, she is working multiple jobs just to keep up with her family's cost of living, let alone being able to afford health care.
"How many more jobs do I have to get? How much more hustling do I have to do? How much more money do I have to put in my pocket, in order to make sure that we're all healthy?," Martin asked. "Nobody should have to worry about that, at the end of the day."
The Legislature is scheduled to consider extending the Medicaid expansion when lawmakers convene in January.
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