KANSAS CITY, Mo. - For babies born with certain heart defects, every second and every detail can be critical, and now a new app is helping families collect and instantly send potentially life-saving information to doctors. Each year, 3,000 babies in the U.S. are born with a single ventricle heart defect, which typically requires three surgeries to correct.
Dr. Girish Shirali, cardiology division director and co-director of The Ward Family Heart Center, Children's Mercy, says nearly 20 percent never make it to the second surgery, in part because doctors can't intervene quickly enough when things go wrong. He says the burden typically placed on families to monitor the babies and painstakingly record data by hand was time-consuming, inefficient and stressful.
"They have to be parents to this baby who has a chronic health condition, plus being parents to maybe their other children, plus running a household," says Shirali. "I just thought, we should be able to do better with technology."
Shirali helped develop and pioneer a new tablet-based app which, when used with a Bluetooth device, gathers and sends critical information and even video directly to the care team, and alerts doctors immediately when customized "trigger points" are reached. So far the app has been used with 17 babies, all of whom made it to their second surgery.
Shirali says this is not a case of technology replacing the human element, but rather enhancing it.
"The beauty of it is we've not lost a single baby," he says. "That's not just the app that's doing the work; the app is just basically collecting the data. It's the team. It's a dedicated team that takes care of these kids. "
He sees broad application for this sort of technology when it comes to patients with chronic conditions that require constant monitoring from caregivers.
"It's about survival, and it's about really creating a mechanism for the surveillance of these patients that is more like a kinder, gentler way of monitoring them," he says.
The app was developed with the support and collaboration of the Claire Giannini Fund and the Heart to Heart Network. The fund has also made it possible for 200 units to be distributed nationally.
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After more than 50 years of use, some Michigan lawmakers say naloxone may not be the best choice in an overdose situation.
Naloxone is sometimes called the "Lazarus drug" because of its powerful ability to seemingly resurrect people after a drug overdose.
Sen. Kevin Hertel, D-St. Clair Shores, and some of his colleagues have introduced a bill which would open the door for what they say are more costly, but more powerful, antidotes.
"Given the prevalence of fentanyl in our communities, and how much stronger some of these drugs that we're now seeing are, we believe -- and in talking with others -- that there should be other tools to respond to an overdose," Hertel explained. "To make sure we're doing everything we can to save somebody's life."
Not everyone is on board with the proposed legislation, Senate Bill 542. Opponents argued the more expensive naloxone alternatives are not necessary, and using them would only increase profits for the pharmaceutical industry.
Jonathan Stoltman, director of the Opioid Policy Institute in Grand Rapids, said while the naloxone alternatives do help in overdose situations, they can also cause nasty side effects.
"The newer approaches, they put people into more severe withdrawal," Stoltman pointed out. "That's a pretty profound negative side effect. The one approach is very inexpensive and works great; the other approach is far more expensive and has this strong negative side effect."
Sponsors of the bill say they're hoping to give Michigan residents a chance to chime in on the issue in a public hearing sometime in June. Michigan saw more than 3,000 opioid overdose deaths in 2021.
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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.
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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.
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