SACRAMENTO, Calif. -- A case which could put so-called "death doulas" out of business gets a hearing this week before a federal judge in Sacramento.
Death doulas support families emotionally through the process of losing a loved one, educate people on their options and sometimes wash and dress the body and assist with home funerals or green burials. The state wants to require them to get a funeral director's license.
Jess Pezley, staff attorney for the nonprofit Compassion and Choices, which has filed an amicus brief to join the case, said the license would require doulas to spend hundreds of thousands of dollars to buy a funeral home equipped to embalm and store bodies.
"They don't embalm. They aren't transporting the body. They aren't offering crematorium services," Pezley outlined. "And they're not doing anything that would put themselves or others at risk of blood-borne viruses, things like that."
Two years ago, the California Cemetery and Funeral Bureau ordered the doulas at Full Circle of Living and Dying in Nevada County to become licensed funeral directors or cease operations. The doulas sued, and a preliminary injunction allowed them to stay in business. The bureau declined to comment.
Pezley noted the state's order was spurred by an anonymous complaint.
"It would make sense that it was somebody in the conventional funeral industry who has this vested financial interest in dissuading people from home burials or green burials," Pezley contended.
Meagan Williams, a death doula and senior media associate with Compassion and Choices, said if the doulas are required to become funeral directors, it would effectively shut down the field and deny families an important option.
"Doulas can bring comfort and peace," Williams stated. "Knowing that they're not alone, knowing that there's somebody who is educated who understands the process, understands what's coming up ahead of them, and can help them plan."
This week both sides are asking for a summary judgment, and a decision is expected early next year.
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February is American Heart Month and some Minnesota families are sharing their experiences with a sometimes overlooked disease among newborns: congenital heart defects.
Studies show congenital heart defects are the most common birth defect in the U.S., affecting nearly 40,000 babies each year. The American Heart Association said thanks to progress in the world of research and treatments, outcomes have improved. But families still find themselves in delicate situations.
Stephanie Johnson is a Minnesota mother whose son Henry was born with a syndrome restricting oxygen supplies to the body. Henry endured several surgeries and now lives a mostly normal life like kids his age but the worry is not over.
"We also know that the honeymoon period doesn't last forever," Johnson acknowledged. "At some point his heart's gonna get tired and he'll be looking at likely a heart transplant at that point."
Johnson hopes for additional medical breakthroughs but she and health experts noted congenital heart defect research is grossly underfunded. Another complication is government spending cuts sought by the Trump administration and the potential impact on agencies such as the National Institutes of Health. Policy experts say the research arm has already been dealing with flat funding levels.
In the absence of government support, current research heavily relies on awareness campaigns involving families navigating health scares. Johnson is among those trying to get the issue on the public's radar.
"We need to move science forward," Johnson urged. "Creating awareness for this is just incredibly important because awareness leads to funding, and funding leads to hope, and we're hoping for a cure."
Studies indicate congenital heart defects are underdiagnosed because milder symptoms are not always caught at birth. It means the disease is detected later in childhood or when the person becomes an adult.
Minnesota's Mayo Clinic and its HeartWorks program, as well as the Heart Association, are part of a network of health entities pushing for research advancements.
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For Pennsylvanians with disabilities, there may be unexpected side effects to ending so-called Diversity, Equity, Inclusion, and Accessibility policies.
President Donald Trump has opted to eliminate DEIA initiatives in federal agencies and federally funded programs.
His executive order signed in January characterizes DEIA policies as "discriminatory."
But in Pennsylvania, Mallory Hudson - the director of the disability justice program at the Keystone Progress Education Fund - said a memo went out ordering the Justice Department's Civil Rights Division to not file any new complaints, motions to intervene, agreed upon remands, amicus briefs, or statements of interest.
"That means that the Department of Justice Civil Rights Division has been instructed not to file any new civil rights cases, right?" said Hudson. "And that includes ADA complaints. So, those are - that is one of the few ways that disabled people can even protect their civil rights."
She adds the Americans with Disabilities Act was first passed in 1990 under President George H.W. Bush, and its legal precedent was based on the Civil Rights Act of 1964.
Hudson said another potential concern is the future of the Inflation Reduction Act under the new administration.
She noted that the IRA has allowed the Centers for Medicare and Medicaid Services to negotiate drug prices - and many are benefiting from its progress, like a $35 co-pay for insulin.
"Older adults and some folks with disabilities have been able to do that $35 copay, and for folks on disability, that's still a pretty big chunk of change," said Hudson. "But it was better than before - and then, that meant taxpayers were paying the difference."
Lower prices have been negotiated for 10 medications so far, cutting costs for patients and saving taxpayers billions.
It's estimated that if the IRA had been enacted in 2023, it would have slashed prescription drug spending by 22% - or roughly $6 billion.
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As health insurance premiums keep rising, Colorado lawmakers are advancing a bill to look at a universal Medicare for All option.
A 2020 report in the Annals of Internal Medicine finds administrative costs for private insurance, and the time doctors spend on billing paperwork, make up over one-third of all healthcare costs in the U.S.
Nathan Wilkes is a board member of with Health Care for All Colorado.
He said he believes the study called for in the bill will confirm previous research showing there is enough money to cover all Coloradans, by removing the middle-man.
"All of the public costs that we are paying, a lot of which are going to insurance subsidies and things like that," said Wilkes, "are more than enough to cover a system where there's a single pipeline."
Insurance industry executives say they've worked to lower administrative costs, and some politicians have argued private companies have better incentives to be more efficient than government services.
But administrative costs for private insurers in the U.S. are nearly six times the costs of Canada's single payer system.
Private insurers also argue they help keep overall costs down, in part by denying claims for procedures they see as unnecessary.
Wilkes said because of the industry's lobbying influence, voters will need to convince lawmakers to ensure all Coloradans can access health care.
"I think people recognize that there's a lot of profit extraction going on by companies that are not delivering any sort of healthcare services at all," said Wilkes, "while their family and friends are having to start 'Go Fund Me's' to pay for their cancer."
According to the Colorado Health Institute, some 265,000 Coloradans had no health insurance last year.
Wilkeds pointed out that Medicare's original aim was to eventually extend coverage to all Americans, not just seniors.
"Truth is that universal healthcare is as American as apple pie," said Wilkes. "Guaranteeing healthcare aligns with our nation's core values of life, liberty and the pursuit of happiness for everybody."
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