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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New Mexico saw record enrollment numbers for the Affordable Care Act this year and is now setting its sights on lowering out-of-pocket costs - those not reimbursed by insurance. More than 56,000 New Mexicans are enrolled in a medical health insurance plan on the state exchange - an increase of 12,000 people overall.

Colin Baillio, deputy superintendent with the state's Office of Insurance, said the state has boosted its outreach and made efforts to improve the overall consumer experience.

"We saw a 40% year-over-year increase, and New Mexico saw the biggest percentage increase during the open-enrollment period among all of the state-based marketplaces," he explained

Part of the enrollment increase is due to what's called the "unwinding" - a federal directive that required all states to redetermine Medicaid eligibility following a three-year pause on checks during the COVID pandemic. He said by using expanded tools made available by the federal and state government, 8% of New Mexico's population is now uninsured - down from 23% in 2010.

Following approval by lawmakers in the 2024 legislative session, the New Mexico governor signed seven health care-related bills into law - one of which requires annual reporting of prescription drug pricing. Baililo said the Affordable Care Act built the foundation that has allowed the state to pursue additional affordability initiatives.

"I'm really glad to see that there's so much interest in the next step of health reform, really leaning into these out-of-pocket cost issues and making it easier for people to afford to stay covered and see their doctors," he continued.

Two years ago, the state also passed a one-of-a-kind law that did away with behavioral health co-pays for people in certain insurance plans.

New York's medical aid-in-dying bill is gaining further support. The Medical Society of the State of New York is supporting the bill. New York's bill allows terminally ill people with only six months to live to use this option, with safeguards requiring two physicians' approval.

The bill's Assembly sponsor Amy Paulin, D-Westchester, said despite the growing support, other hurdles lie ahead.

"Now we have what I believe, if it came to the floor, a majority. There's still a hesitation on the part of leadership. You know, we need members to assure leadership that they no longer have reservations," she said.

Other newly resolved concerns center on making sure insurance companies and doctors who don't support this aren't held liable. She's optimistic the bill will pass after nine years in the Legislature. New York would be the 11th state along with Washington, D.C. to have medical aid in dying legislation.

Corinne Carey, senior New York campaign director with Compassion and Choices finds the pandemic drew a vivid picture of a person's end-of-life experience. There were images of people dying on ventilators, apart from loved ones, and unable to communicate. She said people began thinking about a "good death."

"And, what is a good death is being surrounded by loved ones, having some measure of control, experiencing the touch of your loved ones, and being the one in the driver's seat," she explained.

Now people have different options for end-of-life care, each of which presents various challenges. Polls show medical aid in dying has garnered considerable support since being introduced in 2015. A 2022 Compassion and Choices poll finds 57% of nurses support medical aid in dying professionally, although fewer support it personally.

The California State Assembly is considering a bill to require schools to have a cardiac arrest response plan. Assembly Bill 2887 would make sure schools update their safety plans to include CPR training and an automatic external defibrillator or AED onsite.

Dr. Stephen Sanko, a professor of clinical emergency medicine at USC, and a founding member of the Cardiac Arrest Survivor Alliance, is a volunteer expert for the American Heart Association. He said having a plan in place is critical.

"The American Heart Association is promoting that schools have a cardiac arrest response plan. A written protocol for what to do in order to decrease the likelihood that if somebody collapses, that they die," he said.

Two years ago, 15-year-old Cash Hennessy collapsed on the football field due to a previously unknown heart defect. Two off-duty medics in the stands gave him CPR. The school brought out its AED - but it was useless, because the batteries were dead.

Hennessy said the experience was traumatic.

"I feel blessed that I had people there for me, that could give me C-P-R. But I think about if those people weren't there and that was another kid, who knows what would have happened? Because there wouldn't have been an AED to save them," he explained.

An AED walks people through the steps to deliver a life-saving shock to a person's heart until an ambulance arrives. Studies show that 70% of kids who suffer sudden cardiac arrest at school recover if an AED is deployed correctly - whereas the survival rate for kids and adults not in the hospital is less than 12%.