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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World Hepatitis Day is this Sunday, and for the Oregon Health Authority, it's an opportunity to promote its plan to eliminate hepatitis across the state.

Released in March, the plan includes major goals and strategies to limit the spread of hepatitis A, B and C over the next six years. It's gotten new attention after 2,400 patients in Oregon hospitals were potentially exposed to hepatitis and HIV earlier this month.

Concerns are high, but epidemiologist Dr. Dean Sidelinger, Oregon's state health officer, said people should be aware of the threats of hepatitis, but not anxious.

"In day-to-day times, people should feel safe and confident in going to the doctor," he said. "The risk of exposure to these viruses is extremely low in most cases."

Hepatitis is inflammation of the liver, and contagious viruses are among the causes. Sidelinger said he's confident Oregon has the technology and resources to fully eliminate the threat.

While many people may have heard of hepatitis, they may not fully understand how prevalent it is in their communities. According to OHA data, the proportion of chronic hepatitis C cases among people in their 20s tripled between 2010 and 2019.

Sidelinger said there's a good chance most Oregonians know someone who is affected by chronic hepatitis.

"It can seem out of the blue to be talking about hepatitis and [a] hepatitis awareness day, but this is a disease that affects many individuals," he said. "But the good news is, everyone can take steps to protect themselves."

The OHA says you can help prevent the spread of hepatitis by washing hands and fresh produce, staying current on vaccinations, avoiding sharing needles, and getting tested regularly. These tips and more are part of the state's plan to eliminate hepatitis by 2030.


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CoveredCA announced Wednesday that the average premium for plans on the marketplace will rise 7.9% in 2025, but subsidies are expected to blunt the impact and even lower costs for many consumers.

The Biden-Harris administration's Inflation Reduction Act caps premiums at 8.5% of income for many, and goes even further for those with low incomes.

Rachel Linn Gish, director of communications for the nonprofit Health Access California, said the state has put the federal funds to good use.

"Because of this financial help," she said, "California has been able to take even further steps to lower costs for many CoveredCA enrollees by eliminating deductibles and reducing copays for many health services such as doctors' visits, lab work, generic drugs."

However, the enhanced premium subsidies in the IRA will expire next year, sending costs soaring unless Congress extends them. If not, Gish said, she expects premiums to rise 60% to 80%, costing thousands more per year. Opponents of the extension have cited the need to limit federal spending.

Gish said if the federal premium help ends, people could start seeing much higher deductibles.

"Without the federal assistance, California stands to lose $1.7 billion in assistance, which the state can only backfill a fraction of," she said, "which means consumers could again see deductibles of $5,000 or more."

Other big changes are on the way. Starting Nov. 1, about 40,000 income-eligible DACA recipients in California will be able to apply for premium subsidies through Covered California.

Connecticut insurance companies are requesting rate increases. Companies want a more than 8% increase for individuals and an almost 12% increase for small groups. However, insurance costs are already problematic for residents. A 2022 survey shows 46% of people delayed important medical care due to coverage costs.

Liz Dupont-Diehl, associate director of the Connecticut Citizen Action Group, said unaffordable insurance is all too common.

"It is an unfortunate American right of passage to spend hours a week appealing claims denials, or dealing with rising copays, and surprise costs. Even those of us lucky enough to think we have good coverage are continually surprised by hings that are not covered," she said.

Of the legislative solutions lawmakers can take, polls show voters across party lines support the government setting limits on out-of-pocket medical care costs for people with insurance.

Connecticut's Insurance Department will host an informational meeting for people to share their experiences and hear testimony. It will be held from 9 a.m. to 1 p.m. on August 20 at the Legislative Office Building in Hartford and over Zoom.

One way Connecticut's General Assembly can better regulate insurance companies is by increasing transparency surrounding pharmacy benefit managers. A recent Federal Trade Commission report finds the six largest pharmacy benefit managers manage 95% of the country's prescriptions.

Dupont-Diehl said this can help people better understand why certain claims get denied.

"We would be interested in knowing exactly which claims are denied based on ZIP code, based on race and ethnicity, based on age, based on gender," she continued.

She notes that much of what needs to be done to fix health care can be done at the federal level, although states can take the lead. Part of Connecticut's 2023 budget calls for the state's Insurance Department to work with the Office of Health Strategy to study ways to make care more affordable.