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Their child died while on a waitlist. This CT family is fighting to prevent similar situations
Cris Villalonga-Vivoni, CT Insider, Aug. 20
More than 40 states provide Medicaid coverage for children with severe disabilities or illnesses through what’s known as a Katie Beckett waiver, giving their families access to services and support private insurance often doesn’t cover. Connecticut is one of the few states that limits how many people can receive this coverage, and it typically takes about five years for families to receive coverage through the program. David Negron’s daughter, Chloe, was one of more than 300 children on the waitlist for the Katie Beckett waiver when she died earlier this year at age 6. Negron is among those working to expand access to the waiver so other families do not face the same challenges his family did.
HHS terminates NIH program aimed at diversifying biomedical workforce
Veronica Paulus, STAT, Aug. 25
The Department of Health and Human Services is terminating a National Institutes of Health grant program that supports students from marginalized backgrounds in the biomedical sciences. Experts say that the termination of the program, which provided everything from funding for undergraduates’ lab salaries to mentorship from senior investigators, could close off scientific careers for individuals who wouldn’t otherwise have access to research opportunities. “Rather than our program being biasing, it’s really designed exactly the opposite: to help address biases that already exist in our current system,” said Rochelle Newman, a psychologist at the University of Maryland who used a grant from the program to support undergraduate students.
Medicaid cuts could drive rural hospitals to seek private equity, Murphy warns
Sujata Srinivasan, Connecticut Public, Aug. 22
Federal Medicaid cuts could drive rural hospitals to seek private equity funding – a financial model that has gutted hospitals in Connecticut and other parts of the country and compromised patient safety and care, U.S. Senator Chris Murphy warned state lawmakers in a new report. Kurt Barwis, CEO of Bristol Health, said hospitals face tough choices as they deal with low Medicaid payment rates, taxes, claim denials from insurers, and high-deductible health plans that patients can’t afford. “All of a sudden, everything’s focused on the bad actors or the problems, but not enough focuses on the underlying problems that actually created these hospitals to get in that situation,” Barwis said.
CT meets with other states about public health independence from federal government
Jordan Nathaniel Fenster, CT Insider, Aug. 26
Connecticut and other New England states could be considering branching out from federal health oversight of vaccines and making their own recommendations and guidance. Connecticut public health Commissioner Manisha Juthani was part of an eight-state meeting last week to discuss regional approaches to vaccine administration. While a decision is not necessarily imminent, there are ongoing concerns in many states about the direction of the Trump administration’s approach to public health policy. One expert said that if Connecticut and other states issue guidance that does not align with federal regulators, they will need to “ask the legislature to pass protections so that no one can claim doctors who followed their recommendations did something that was not appropriate.”
For parents of cancer patients, New Haven pizza is a slice of relief
Katy Golvala, The Connecticut Mirror, Aug. 27
It can be expensive to eat when you’re in the hospital caring for a kid with cancer. Jeff and Sam Dorman learned this after their 2-year-old daughter was diagnosed with leukemia. Her meals were provided. But when Jeff Dorman started ordering hospital food for himself, the cost started adding up quickly. Cancer patients and their families often experience financial strain that goes beyond medical bills. A parent might have to scale back or stop working, and smaller expenses — like hospital parking, gas to cover trips to the doctor, and meals for anyone other than the patient — all add up. Last year, the Dormans began the Feeding Families Foundation, which delivers free meals to parents of children getting treated on the pediatric hematology oncology floor at Yale New Haven Hospital.