KANSAS CITY, Mo. -- About 20,000 people in the U.S. are living with hemophilia, a rare, inherited blood disorder. And a study of the disease is under way at Children's Mercy hospital.

Hemophilia causes a person's blood not to clot, and that can lead to severe bleeding, joint damage, bleeding into the brain and even death. It's an inherited disease that affects people from all racial and ethnic groups, and strikes 1-in-5,000 boys.

Dr. Shannon Carpenter, director of the Hemophilia Treatment Center at Children's Mercy, said some patients develop an antibody, also called an inhibitor, and that means the medicines used to treat hemophilia won't work. Scientists are trying to figure out why.

"We don't understand all of the reasons why people might get an inhibitor,” Carpenter said. “And we don't really understand how, even if we know someone is more at risk, we don't really know how to keep them from getting an inhibitor."

Children with a family history, along with African American and Hispanic children, are more likely to develop the inhibitor. The study is just getting under way and will take place over the next six years.

Carpenter said other studies have been done outside the U.S. but this one takes an in-depth look at children who have been diagnosed with the illness.

"We haven't focused on specifically untreated young children in the way that we plan on focusing on here,” she said. "We're getting lots of information about their genetics, looking at what kind of medication they're using, how often they're using it, what situation they're using it in."

For the first phase of the study, Children's Mercy is collaborating with Rady Children's Hospital in San Diego and BloodCenter of Wisconsin, along with doctors who have studied the disease extensively in the Netherlands. Then it will move on to all 140 hemophilia treatment centers in the U.S.

More information on hemophilia is available at cdc.gov.


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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.

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.