Updated 6:30 p.m.

The Trump administration has announced an ambitious plan to change treatment for kidney disease in the United States.

President Trump signed an executive order Wednesday directing the Department of Health and Human Services to develop policies addressing three goals: reducing the number of patients developing kidney failure, reducing how many Americans get dialysis treatment at dialysis centers and making more kidneys available for transplant.

“With today’s action, we’re making crucial progress on another core national priority: the fight against kidney disease,” Trump said at a speech prior to signing the order.

Kidney disease is the ninth-leading cause of death in the U.S. and a major expense for the federal government. Medicare pays for end-stage renal disease treatment, including dialysis and kidney transplant.

“Taxpayers spend more on kidney disease — over $110 billion — than we do on the National Institutes of Health, the Department of Homeland Security and NASA combined,” Joe Grogan, head of the White House’s Domestic Policy Council told reporters.

The executive order pushes for changes in three areas: prevention, dialysis care and kidney donation. To implement parts of the order, the Centers for Medicare and Medicaid Services announced Wednesday five proposed payment models intended to increase innovation in the delivery of kidney care.

Better prevention of kidney failure is desperately needed, according to Dr. Holly Mattix-Kramer, a kidney specialist at Loyola University Chicago and the president of the National Kidney Foundation. Mattix-Kramer was among dozens of kidney specialists and patient advocates who attended the announcement Wednesday.

“We’re extremely excited,” she says. “For so long we felt like no one was paying attention to this epidemic of kidney disease.”

One problem, she explains, is that there hasn’t been financial incentive to get doctors to screen for kidney disease or to diagnose and educate patients about it. “Once you get kidney failure then there’s a payment structure for that,” she says. “But there lacked a good payment structure incentive for preventing kidney failure, which seems not intuitive and seems obviously something that we should fix.”

The executive order proposes to change the way Medicare providers are paid to motivate them to focus on patient education and preventing the progression of kidney disease. It also calls for an awareness campaign. “Forty percent of Americans with some stage of kidney disease do not know they have it,” Health and Human Services secretary Alex Azar told reporters on a call Wednesday morning.

A key focus of the executive order is effort to encourage in-home dialysis. One of the new, proposed CMS models incentivizes clinicians to offer this option to patients.

Currently, most dialysis is delivered at dialysis centers, a multibillion-dollar industry dominated by two for-profit companies. In-center dialysis can be time-consuming and burdensome for patients.

“Currently only 12% of American dialysis patients receive it at home. That would compare to 56% in Guatemala and 85% in Hong Kong,” said Azar. “We want to get to 80% of those who are under treatment either in-home dialysis or transplanted eventually — so a radical change from where we stand now.”

CMS Administrator Seema Verma explained that the current system prioritizes payment to in-center dialysis, but her agency wants to start to incentivize in-home dialysis and transplants.

“The way we currently pay for chronic kidney disease and kidney failure isn’t working well for patients,” said Verma in a statement.

Mattix-Kramer says the administration’s targets for increasing the proportion of patients getting dialysis at home may be overly ambitious. “It’s great to have big goals like that, but I do think 80% is going to be incredibly difficult,” she says.

For a lot of her patients, it wouldn’t be easy to switch to in-home treatment. “You need social support and you need a clean house and you need someplace to have equipment. Many of our patients live in areas where they don’t even have a grocery store in their neighborhood,” she says. “A lot of those socioeconomic issues would need to be addressed.”

Another focus of the executive order is the organ transplant system. Currently, close to 100,000 people are on a waiting list for kidneys.

“Many, many people are dying while they wait,” Trump said, addressing a room full of kidney doctors, advocates and patients in Washington, D.C., just before signing the executive order. “We’ll do everything we can to increase the supply … of the available kidneys and getting Americans off these waitlists.”

Azar said he believes it’s possible to double the number of kidneys available for transplant by 2030. “There is currently a lack of accountability and wide variability among these organ procurement organizations,” he said. “The executive order will demand a much higher level of accountability.” He also said living donors could receive compensation from the government for lost wages and child care.

Finally, the executive order encourages research and development of an artificial kidney, an innovation that could someday replace the need for transplants.

Administration officials touted Wednesday’s news as the first major action related to kidney disease in decades. Previous administrations, including Barack Obama’s, have suggested similar initiatives, but not much has changed.

Andy Slavitt, who ran the Centers for Medicare and Medicaid Services under President Obama, praised Wednesday’s announcement on Twitter. “Care of kidney patients has been broken in the US for a long time, plagued with a corporate duopoly [and] a lower income minority population losing out,” he wrote.

But he also pointed out that as the Trump administration makes this announcement, it is arguing in court that the Affordable Care Act should be struck down as unconstitutional. “There is one law that makes this new change possible. The same law that requires people with [preexisting] conditions get coverage. The ACA,” he tweeted. “Without it, there is no authority to do this.”

It was unclear how quickly these changes could roll out. Frequently, Trump’s executive orders instruct agencies to develop federal rules, a lengthy bureaucratic process. One more immediate change is in how Medicare providers are reimbursed; CMS announced that its proposed payment models would roll out starting in January 2020.

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Six years ago, a newly minted graduate of the School of the Art Institute of Chicago was working three part-time jobs and adjusting to life as a non-student. She stopped in for a drink one night at a restaurant in Chicago’s Bucktown neighborhood, where she got into a conversation with a guy. The next thing she remembers clearly was awakening at home the next morning, aching, covered in bruises, with a swollen lip.

She believed she had been raped and went to the local police station to file a report. The police sent her to a hospital emergency room nearby where, with her permission, a doctor did a medical forensic exam, checking her for injuries and taking evidence from her body and clothes to potentially use in a prosecution case. The exam took hours and made her even more miserable.

Police never made an arrest.

As time passed and the woman tried to move past the assault, she received regular, unwelcome reminders: bills from the hospital and emergency physicians group that treated her.

The physicians group eventually sent her bill to a collection agency, and she started receiving nagging phone calls as well. Now 28 and living near Dallas, she still gets phone calls and letters a couple of times a year ordering her to pay up.

“When I get that phone call, it’s still so raw. I’m shaking,” says the woman, whose first name is Erin. (NPR has agreed not to use Erin’s last name, to protect her privacy.)

For 25 years, the federal Violence Against Women Act has required any state that wants to be eligible for certain federal grants to certify that the state covers the cost of medical forensic exams for people who have been sexually assaulted.

Subsequent reauthorizations of the Act have clarified that these individuals also can’t be required to participate with law enforcement to get an exam; nor do they have to pay anything out-of-pocket for that exam at any point (not even if they would be reimbursed later).

And yet for some people who have been raped, the bills keep coming — despite this long-standing federal prohibition and other state laws that provide additional financial protections in many places.

“There’s often a disconnect between the emergency room personnel that take care of the person and the billing department that sends out the bills,” says Jennifer Pierce-Weeks, CEO of the International Association of Forensic Nurses, professionals who have specialized training in how to evaluate and care for victims of violent crime or abuse.

There is wide variation in how states meet their financial obligations to cover sexual assault exams — sometimes called “rape kits” — that collect evidence of the crime. Many states tap funds they receive under the federal Victims of Crime Act. Others use money from law enforcement or prosecutors’ budgets or other designated options.

What services are covered as part of the rape exam can vary by state as well. Federal rules require that the patient be interviewed and examined for physical trauma, penetration or force, and that evidence be collected and evaluated.

But many states include additional services without charging victims, including testing and treatment for pregnancy or sexually transmitted diseases. Some may cover treatment for counseling, or for injuries that survivors experience during the assault.

Having financial protections on the books for people who have been raped, however, doesn’t necessarily translate to seamless, no-cost services on the ground.

For instance, New York requires that patients treated for sexual assault receive some services at no charge beyond the federal requirements, including emergency contraception and treatment for STDs, says Christopher Bromson, executive director of the Crime Victims Treatment Center in New York.

Still, last November the New York attorney general’s office announced settlements with seven hospitals that had illegally charged more than 200 such patients for medical forensic exams, with amounts ranging from $46 to $3,000. In some cases, the hospitals referred the individuals to bill collectors who dunned them for the payments.

Afterward, the Healthcare Association of New York State, a nonprofit group that advocates for better health services, teamed up with the state Department of Health and others to present four webinars for hospital personnel to explain their legal responsibilities.

Karen Roach, the association’s senior director of regulatory affairs and rural health, says the billing problem in New York doesn’t appear widespread.

“Some of these issues arose from greater automation of the billing process,” Roach says. “Training is needed to flag these cases, to put systems in place not to automatically generate a bill.”

Working with an advocacy group, Erin eventually got the hospital to stop billing her. But the emergency physicians group that treated her no longer exists, and her $131.68 bill has been bundled with other debts and resold to different collectors several times, she says.

When Erin tells a debt collector that the bill they’re calling about is for services related to rape, “They say, ‘Oh, we’ll fix it,’ but they don’t,” she says. “They just sell it again and it just becomes someone else’s problem. But it’s always my problem.”

Despite state and federal laws, many people who were raped wind up paying for some medical services out-of-pocket, even if they have insurance. An analysis of billing records from 1,355 insured female rape survivors found that in 2013 they paid an average $948 out-of-pocket for prescription drugs and hospital inpatient or outpatient services during the first 30 days after the assault. That amount represented 14% of total costs, the study found.

“We just assumed that this was only a problem for women who fell through the cracks,” says Kit Simpson, a professor in the department of health care leadership and management at the Medical University of South Carolina in Charleston, who co-authored the study. “But this was a systematic problem.”

Some people who have been assaulted sexually don’t want to use their insurance in any case, because they are worried about privacy or safety issues if family members or others find out, advocates say.

The Violence Against Women Act, often referred to as VAWA, is up for reauthorization this year. It’s not clear if a new bill would address these payment issues. If states don’t certify that they shoulder the cost of rape exams, funds can be frozen. (States must also certify that they don’t require these patients to participate in the criminal justice system.)

The Department of Justice declined multiple requests for comment on whether and how those VAWA provisions are enforced.

Some advocates for people who have been sexually assaulted would like to see the federal definition of what must be included in a no-cost medical forensic exam broadened to include such services as testing and medication for pregnancy and sexually transmitted infections, including HIV. Such a move would level the playing field across the U.S., they say.

Janine Zweig, associate vice president of justice policy at the Urban Institute, who co-authored a study examining state payment practices for rape exams, says a federal standard should be considered. “Do we really want it to be about which state you live in?”

Kaiser Health News is a nonprofit, editorially independent program of the Kaiser Family Foundation. KHN is not affiliated with Kaiser Permanente.

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California has become the first state in the country to offer government-subsidized health benefits to young adults living in the U.S. illegally.

The measure signed by Gov. Gavin Newsom on Tuesday extends coverage to low-income, undocumented adults age 25 and younger for the state’s Medicaid program.

Since 2016, California has allowed children under 18 to receive taxpayer-backed healthcare despite immigration status. And state officials expect that the plan will cover roughly 90,000 people.

The idea of giving health benefits to undocumented immigrants is supported by most of the Democratic candidates running for president, and California’s move comes as the Trump administration continues to ramp up its hardline crackdown on unauthorized immigrants. On Tuesday, Newsom said the state law draws a sharp contrast with Trump’s immigration policies.

“If you believe in universal health care, you believe in universal health care,” Newsom said. “We are the most un-Trump state in America when it comes to health policy.”

In California, extending health benefits to undocumented immigrants is widely popular. A March survey conducted by the nonpartisan Public Policy Institute of California found that almost two-thirds of state residents support providing coverage to young adults who are not legally authorized to live in the country.

California, the institute notes, has more immigrants than any other state. And an estimated 14% of them are living in the state without legal status.

A national poll suggests that many Americans across the country are far less accepting of the notion of giving health coverage to those who came into the U.S. illegally. A CNN poll conducted after the Democratic debates last month found that 59% of those surveyed do not think government-backed health coverage should be provided to undocumented immigrants.

In most states, people living in the country illegally are not eligible for federal health insurance programs like Medicaid and Medicare, except is some cases, like medical emergencies and pregnancies, according to the National Conference of State Legislatures.

Republican lawmakers in California criticized the law, arguing that the state should be spending health care dollars on those living in the state legally.

“We are going to be a magnet that is going to further attract people to a state of California that’s willing to write a blank check to anyone that wants to come here,” said Republican Senator Jeff Stone at a May legislative hearing. “We are doing a disservice to citizens who legally call California their home.”

The plan does not cover all unauthorized immigrants under 25, only those whose incomes are low income to qualify. State officials estimate in the first year the program will cover around 138,000 residents and cost California taxpayers $98 million.

Trump has publicly attacked Newsom’s plans.

“It’s crazy what they’re doing. It’s crazy,” Trump told reporters last week. “And it’s mean, and it’s very unfair to our citizens. And we’re going to stop it, but we may need an election to stop it.”

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