In a corner of Jymie Jimerson’s house in the town of Sparta, in southwest Missouri, she has set up a kind of shrine. It has Native American art representing her Cherokee heritage alongside Willie Nelson albums, books and photos in remembrance of her late husband.

There’s a copy of Willie’s mid-’70s LP Red Headed Stranger. “When Steve was young, he had red hair and a red beard, so he always really identified with Willie’s Red Headed Stranger,” Jimerson says. “I try to keep it up there as a reminder of better days.”

Her husband, Steve Jimerson, was sentenced to life in prison in 1996 for his role in the shooting deaths of two men. Jymie says her husband’s life had been ravaged by drug abuse. But after he entered prison, he got off drugs and become a mentor for other inmates.

“Once he got inside, recovery became his life,” Jymie says. “And that was his passion until the day he died.”

Steve died on Jan. 6, 2017, of complications from hepatitis C, a liver infection that’s especially widespread among prison inmates. He was 59.

While the disease is common among the incarcerated, treatment with the latest hepatitis drugs isn’t.

Civil liberties groups in Missouri and at least seven other states are now suing to get more inmates treated with new-generation hepatitis C drugs that are highly effective but also very costly.

After Steve Jimerson was diagnosed with hepatitis C while in prison, Jymie says he was on the lookout for news of treatment advances.

In 2013, Gilead Sciences introduced Sovaldi, the first of a new generation of drugs called direct-acting antivirals that can cure hepatitis C and with fewer side effects than the previous treatments. But the excitement was dampened by the drug’s price. A full course of treatment cost $84,000.

In 2016, around 5,000 inmates in Missouri’s inmates had hepatitis C, and no more than 14 of them received the drugs, according to internal state data obtained by the MacArthur Justice Center in St. Louis.That’s about 15 percent of the 32,000 people incarcerated in Missouri’s prisons.

Jymie says that her husband wasn’t given direct-acting antivirals. By the fall of 2016, Jimerson’s health was deteriorating rapidly, and he grew pessimistic about the prospects for a cure.

“He told me that if someone had to die to get the DOC [Department of Corrections] to change their policy, he was OK with it being him,” Jymie says.

As recently as 2012, scores of Missouri inmates were being treated with older hepatitis C drugs, including one called interferon that is notorious for its debilitating side effects.

But in 2013, the Federal Bureau of Prisons started changing treatment guidelines to replace the old hepatitis C drugs with new ones.

Many states follow those guidelines, including Missouri, according to a spokesperson from Corizon Health, the private company that provides health care for Missouri’s inmates.

But the updated guidelines gave prisons more leeway to decide when it’s appropriate to provide treatment. And asMissouri phased out the old drugs, it hasn’t used the new drugs nearly as often. That has left only a handful of inmates getting any hepatitis C drug treatment at all.

In December of 2016, the American Civil Liberties Union and MacArthur Justice Center sued to get the Missouri Department of Corrections to provide direct-acting antiviral drugs to inmates with hepatitis C who qualify for treatment.

ACLU lawyer Tony Rothert says the state’s current treatment practices violate the Constitution’s Cruel and Unusual Punishments Clause.

“The Supreme Court has said that in the context of medical care, that means that prisons cannot be deliberately indifferent to serious medical needs,” Rothert says. “Hepatitis C fairly easily satisfies this test, because if left untreated, there’s a fair chance that you will die.”

Advocates making this argument got a big boost for their case in November, 2017, when a federal judge in Florida ordered that state’s prisons to start providing direct-acting drugs to its inmates at least until that state’s case goes to trial in August.

“It was a great victory for people who are incarcerated and have hepatitis C because now we have a federal judge who said, ‘Look, this is just unconscionable,’ and the state is going to have to do something about it,” says Elizabeth Paukstis, public policy director of the National Viral Hepatitis Roundtable.

In July, 2017, the Missouri lawsuit took a leap forward when the judge overseeing the case certified it as a class action on behalf of state inmates with hepatitis C. The Missouri Department of Corrections and Corizon, which are defendants in the lawsuit, have appealed that ruling.

Both the Missouri Department of Corrections and Corizon declined to comment on the suit or answer questions about their hepatitis C treatment protocols beyond saying they are following federal guidelines.

But if Missouri and other states are required to offer the new drugs, they would face a huge problem, says Gregg Gonsalves, an assistant professor of epidemiology at the Yale School of Public Health. “Even if they wanted to treat patients, they would break the bank. They would run out of money to treat every other medical condition,” he says.

For example, if Missouri gave the 2,500 inmates that the ACLU says are candidates for Harvoni, the acting antiviral drug it now uses, the cost would exceed $236 million, based on its list price. That far exceeds the Department of Corrections’ entire budget for inmate health.

Gonsalves says the emergence of newer, cheaper drugs could help, and some state prison systems have managed to negotiate discounts.

Even at a lower cost, though, providing these drugs on a large scale could still cost states a fortune. But advocates insist it’s worth it to stop the disease from spreading.And a 2015 study showed that as many as 12,000 lives would be saved if inmates across the country were screened and treated; preventing liver transplants and liver disease would save money in the long run.

“The impetus for treating infectious disease in the prison system is that it’s a population you can reach, it’s a population you can cure, and it’s a population you can help prevent onward infections from,” Gonsalves says.

Jymie Jimerson understands that many people might be skeptical about providing expensive health care for prison inmates. But she hopes they can see them as more than people convicted of crimes.

“I’m not condoning what they did. I’m not condoning criminals,” she says. “What I’m saying is, they’re human beings. And there are hundreds, hundreds of first-time offenders that this medication would cure them. So that when they went home, they could actually spend time and enjoy a little bit of life with their families.”

This story is part of a reporting partnership with NPR, KCUR and Kaiser Health News. You can find Smith on Twitter: @AlexSmithKCUR.

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Colin Campbell needs help dressing, bathing and moving between his bed and his wheelchair. He has a feeding tube because his partially paralyzed tongue makes swallowing “almost impossible,” he says.

Campbell, 58, spends $4,000 a month on home health care services so he can continue to live in his home just outside Los Angeles. Eight years ago, he was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, which relentlessly attacks the nerve cells in his brain and spinal cord and has no cure.

Because of his disability, he has Medicare coverage, but he can’t use it for home care — as the former computer systems manager has been told by 14 home health care providers.

That’s an incorrect but common belief. Medicare does cover home care services for patients who qualify but, according to advocates for seniors and the home care industry, incentives intended to combat fraud and reward high quality care are driving some home health agencies to avoid taking on long-term patients, such as Campbell, who have debilitating conditions that won’t get better. Rule changes that took effect this month could make the problem worse.

“We feel Medicare coverage laws are not being enforced and people are not getting the care that they need in order to stay in their homes,” says Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy, a nonprofit, nonpartisan law firm. The group is considering legal action against the government.

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Because of his ALS, Colin Campbell needs to wear a brace, and he relies on help from a home health worker to get bathed and dressed every day.

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Federal law requires Medicare to pay indefinitely for home care — with no copayments or deductibles — if a doctor ordered it and patients can leave home only with great difficulty. They must need intermittent nursing, physical therapy or other skilled care that only a trained professional can provide. They do not need to show improvement.

Those who qualify can also receive an aide’s help with dressing, bathing and other daily activities. The combined services are limited to 35 hours a week.

Medicare affirmed this policy in 2013 when it settled a key lawsuit brought by the Center for Medicare Advocacy and Vermont Legal Aid. In that case, the government agreed that Medicare covers skilled nursing and therapy services — including those delivered at home — to maintain a patient’s abilities or to prevent or slow decline. It also agreed to inform providers, those who audit bills, and others that a patient’s improvement is not a condition for coverage.

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Campbell is able to move around his house with the help of a walker.

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Campbell says some home health care agencies told him Medicare would pay only for rehabilitation, “with the idea of getting you better and then leaving,” he says. They told him that Medicare would not pay them if he didn’t improve, he says. Other agencies told him Medicare simply did not cover home health care.

Medicaid, the federal-state program for low-income adults and families, also covers home health care and other home services, but Campbell doesn’t qualify for Medicaid.

Securing Medicare coverage for home health services requires persistence, says John Gillespie, whose mother has gone through five home care agencies since she was diagnosed with ALS in 2014. He successfully appealed Medicare’s decision denying coverage, and afterward Medicare paid for his mother’s visiting nurse as well as speech and physical therapy.

“You have to have a good doctor and people who will help fight for you to get the right company,” says Gillespie, of Orlando, Fla. “Do not take no for an answer.”

Yet a Medicare official did not acknowledge any access problems. “A patient can continue to receive Medicare home health services as long as he/she remains eligible for the benefit,” says spokesman Johnathan Monroe.

A leading industry group contends that Medicare’s home health care policies are often misconstrued. “One of the myths in Medicare is that chronically ill individuals are not qualified for coverage,” says William Dombi, president of the National Association for Home Care and Hospice, which represents nearly half of the nation’s 12,000 home care providers.

Part of the problem is that some agencies fear they won’t be paid if they take on patients who need their services for a long time, Dombi says. Such cases can attract the attention of Medicare auditors who can deny payments if they believe the patient is not eligible, or they suspect billing fraud. Rather than risk not getting paid, some home health agencies “stay under the radar” by taking on fewer Medicare patients who need long-term care, Dombi says.

And those companies may have a good reason to be concerned. Medicare officials have found that about a third of the agency’s payments to home health firms in the fiscal year ending last September were improper.

Shortages of home health aides in some areas might also lead an overburdened agency to focus on those who need care for only a short time, Dombi says.

Another factor that may have a negative effect on chronically ill patients is Medicare’s Home Health Compare ratings website. It includes grades on patient improvement, such as whether a client got better at walking with an agency’s help. That effectively tells agencies who want top ratings “to go to patients who are susceptible to improvement,” Dombi says.

This year, some home care agencies will earn more than just ratings. Under a Medicare pilot program, home health firms in nine states will start receiving payment bonuses for providing good care and those who don’t will pay penalties. Some criteria used to measure performance depend on patient improvement, Holt says.

Another new rule, which took effect last Saturday, prohibits agencies from discontinuing services for Medicare and Medicaid patients without a doctor’s order. But that, too, could backfire.

“This is good,” Holt says. “But our concern is that some agencies might hesitate to take patients if they don’t think they can easily discharge them.”

This article was written with the support of a journalism fellowship from New America Media, the Gerontological Society of America and the Silver Century Foundation. Kaiser Health News (KHN) is a nonprofit news service. It’s an editorially independent program of the Kaiser Family Foundation, and not affiliated with Kaiser Permanente. You can find Susan Jaffe on Twitter @susanjaffe.

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President Trump is in excellent health with “no indication” of “any cognitive issues” — but he could afford to lose a few pounds and start exercising over the coming year, according to the president’s physician.

Dr. Ronny Jackson, a Navy rear admiral who directs the White House medical unit, conducted Trump’s annual physical last Friday. He told reporters on Tuesday that the president’s cardiac health is strong and that there are no concerns about any memory or cognitive issues.

“I found no evidence that the president has any issues whatsoever with his thought process,” Jackson told reporters during Tuesday’s White House briefing.

The tabloid-style book Fire and Fury by journalist Michael Wolff, published this month, led to speculation about Trump’s mental fitness for office. Trump responded to the criticism by calling himself a “very stable genius.”

Jackson said on Tuesday that Trump asked him to perform the cognitive exam, which the doctor had not planned to do, having deemed it unnecessary. Jackson said Trump performed “exceedingly well” and is “very sharp.”

Jackson said the president enjoyed good health despite a subpar diet and no exercise routine.

“It’s called genetics,” Jackson said. “Some people just have great genes. I told the president if he had a healthier diet over the last 20 years he might live to be 200.”

Jackson also noted that Trump has abstained from alcohol and tobacco for his entire life, which contributed to his relatively good health.

Trump, 71, is 6 feet 3 inches tall and weighs 239 pounds, Jackson said, which is classified as overweight and is 1 pound away from being obese, according to the NIH’s body mass index calculator.

Jackson said he will work with Trump to exercise more over the coming year, to eat better and lose between 10 and 15 pounds.

Trump does take Crestor to lower his cholesterol, daily aspirin for heart health, Propecia for male pattern baldness, a skin cream for rosacea and a daily multivitamin. His blood tests and other vitals were all normal.

Jackson said that there is no reason Trump wouldn’t be able to complete his first term healthwise, in addition to a second term if re-elected.

During the presidential campaign, Trump’s longtime personal physician, Harold Bornstein, famously declared that Trump would be “the healthiest individual ever elected to the presidency.” Trump released his health history in 2016 on controversial TV host Dr. Mehmet Oz’s show.

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People diagnosed with cancer understandably reach for the very best that medical science has to offer. That motivation is increasingly driving people to ask to have the DNA of their tumors sequenced. And while that’s useful for some malignancies, the hype of precision medicine for cancer is getting far ahead of the facts.

It’s easy to understand why that’s the case. When you hear stories about the use of DNA sequencing to create individualized cancer treatment, chances are they are uplifting stories. Like that of Ben Stern.

In the spring of 2016, Stern was diagnosed with a deadly brain cancer, glioblastoma. His doctors at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins promptly treated him with surgery, then over the months, chemotherapy and radiation. He even got on a clinical trial to see if a leading edge drug called a checkpoint inhibitor would work.

Ben Stern found out abruptly that wasn’t doing the trick either, when he was struck with a seizure. “My whole right side clenched up and [my wife] Tara had called 911 in the middle of it.”

The tumor had grown back, so surgeons went in again to remove what they could. Tara said the next month’s appointment showed the surgery hadn’t worked, either.

“The tumor had already grown back and it was already bigger than the original size tumor that we had found the previous May,” Tara Stern says. This staggering regrowth took only five weeks.

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The Sterns hang up images of Ben’s brain tumor, shown on the right (white) in each image, and also five weeks after treatment.

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Stern’s doctor got a sample of the tumor and sent a genetic analysis of it to what Hopkins calls its “molecular tumor board.” It’s a small group of doctors who meet Mondays to review these genetic tests. They found an overactive gene in his tumor that’s only rarely associated with brain cancer. But that mutation in other cancers sometimes responds to a particular drug. So Ben went on it as part of his ongoing treatment.

“He started his next round of chemotherapy that Monday but he didn’t seem to get weaker,” Tara says, “He was getting stronger almost every day. It was almost miraculous.”

Ben says the drug even reversed his deteriorating mental state brought on by the brain tumor. At the next monthly appointment, following a brain scan, Ben and Tara got more good news.

“The tumor was immeasurable on that next MRI,” Tara says. “It wasn’t there, to put it bluntly.”

Ben’s eyes well up as he hears his wife telling the story. “I was basically as I am now, which is in tears.”

Eight months later, Ben was thinking ahead about his future, rather than wondering whether his life is ending.

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Ben and Tara on their wedding day in 2015. The next year, Ben was diagnosed with a brain tumor.

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“We have to use this result with caution because we don’t know how long this effect might wear on, but for the time being this is a clinically very meaningful benefit,” says his doctor at Hopkins, medical oncologist Matthias Holdhoff.

And while it’s a good-news story for the field of precision medicine, it is also not the way most of these stories end.

“We’re getting better, but like many things in life, there’s hope and hype. And that’s also the reality with precision medicine right now,” says Ben Park, an oncology professor at the Sidney Kimmel Comprehensive Cancer Center at Hopkins. After noticing how much confusing genetic information was flooding doctors at Hopkins, he founded the molecular tumor board there.

“The reason I started this tumor board [in 2013]… was simply because there was a patient, a young woman who had metastatic breast cancer who had a mutation on one of these reports and decided to forego standard-of-care therapies, which have been proven to actually prolong life in this setting,” Park says. Instead, the woman enrolled in a clinical trial that didn’t really make sense for her particular type of cancer and “she almost died. She had really bad toxicity from the experimental drug.”

She was drawn, Park says, by the allure of precision medicine. Patients and doctors alike are clamoring for these tests. But interpreting the results isn’t easy because different companies offer these tests and interpret the DNA signatures differently, “and that can make a huge difference,” Park says.

“That’s where we’re having difficulty right now as a field,” he says, harmonizing test results that often disagree with each other.

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Ben’s tumor recently grew back and he’s now undergoing further treatment.

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At Hopkins, the genomic tests usually don’t offer any suggestion for treatment. Only about one quarter of patients at Hopkins are steered toward particular drugs or toward ongoing clinical trials. Other top medical centers find they can identify potential treatments only about 10 percent of the time.

So far there’s only been one randomized study of this approach to precision cancer care — and it did not show a survival advantage for people who went through all this genetic testing.

“If you have this knowledge, it’s not enough,” Park says. “You have to prove that acting on that knowledge — some medical intervention — will actually afford benefit for patients. That’s the trickiest, toughest part about looking at all these types of genomic tests, to really prove that this is making a difference in the lives of our patients.”

Park has since passed on leadership of the molecular tumor board to his colleague, oncologist Josh Lauring. Lauring says there are a few cancers where DNA analysis does make a clear difference, say in melanoma and certain types of lung cancer.

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Tara keeps detailed notes of Ben’s progress and also keeps track of his treatment schedule on a daily basis.

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“In other cancers, it’s really kind of an open question. At the same time, this testing is available commercially as well as at academic medical centers, and is being done. Patients want it, providers want it.”

So what’s happening, in effect, is a huge, unorganized experiment, involving real patients, treated differently in all sorts of settings. Lauring and colleagues at Hopkins are trying to keep track of all their patients: what treatment they got, how long it was successful, and how long the patients lived.

“We think it’s really important to capture that information as well, to try to learn from it,” Lauring says, “because in many cases it’s not going to be effective, but in some it is, and it’s important for us to figure that out.”

Therapies that target specific genetic patterns are appealing because medical scientists have some sense of the biology underlying their drugs — they aren’t just killing fast-growing cells, as conventional chemotherapy does.

“Unfortunately in many cases these responses, if they occur, are relatively brief.”

That unfortunately turned out to be the case for Ben Stern as well. Five months after his remarkable response, Ben started feeling weaker again. An MRI suggested the cancer might be on the move. So he went back to the hospital for another round of chemotherapy and radiation.

They’re hoping for the best.

Contact Richard Harris at rharris@npr.org.

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Kentucky got the green light from the federal government Friday to require people who get Medicaid to work. It’s a big change from the Obama administration, which rejected overtures from states that wanted to add a work requirement.

Medicaid’s chief federal officer is Seema Verma; her home state of Indiana submitted plans for a work requirement last year, and the approval letter could come any day now. Under the proposal, people would have to average 20 hours a week of work or another qualifying activity — such as volunteering or getting an education — to get Medicaid.

The goal is to increase employment among Medicaid recipients. But Sara Rosenbaum, a professor of health law and policy at George Washington University, says there’s a problem with that — most people on Medicaid are already working, or looking for work. Or they’re caring for a child or family member, or they’re sick or disabled.

Many of those people would be exempt from a work requirement, and states could also make some allowances for people battling addiction. When you consider all those exemptions, says Rosenbaum, “There is this very, very tiny slice of [of the population] who can work and simply choose not to work and apply for public assistance.”

And even if states create programs that help people find jobs, and provide things like childcare and transportation, Rosenbaum says, there’s no evidence that they would lead to more employment. And those programs are expensive.

“If you do a work program, it costs real money,” she says, “and the federal government has said, ‘we won’t pay any of those costs.’ “

What’s more likely, Rosenbaum says, is that states will basically say, ‘Get a job on your own, or get off Medicaid.’ “

And what that does, she says, is create a hurdle for everybody on Medicaid. People who are working are going to have to prove they are employed, so even people with jobs could stand to lose their insurance because of red tape. In fact, the state of Indiana’s own projections show that with a work requirement, Medicaid will cover fewer people and cost more.

Adam Mueller is an attorney at Indiana Legal Services, which helps people navigate that state’s Medicaid program. He says people already lose coverage because the program can be confusing, and there are administrative errors.

“Somewhere along the way, paperwork gets lost; there’s a miscommunication,” he says, “Folks have sometimes had difficulty proving something as easy as residency.”

And people on Medicaid often deal with crises – they may move a lot, or change phone numbers, which makes it hard to keep track of paperwork. Adding a work requirement on top of all that, Mueller says, would make staying enrolled even harder.

“There are a lot of things that can trip folks up, and that could lead to falling through the cracks,” he says.

Judith Solomon, of the Center for Budget and Policy Priorities, points out that expanded Medicaid helps some employers, too.

“We have an economic structure where there are people whose employment doesn’t provide health care,” she says.

If employees lose Medicaid, get sick and can’t make it to work, she says that’s bad for business.

Verma told reporters during a conference call Thursday that the requirement is supposed to help people.

“People moving off of Medicaid is a good outcome,” she said, “because we hope that that means they do not need the program anymore, that they have transitioned to a job that provides health insurance or that they can afford insurance on their own. This policy helps people achieve the American dream.”

But advocates say the main purpose of Medicaid is to provide health insurance, not increase employment. And until now, the federal government agreed.

Susan Jo Thomas heads Covering Kids and Families of Indiana, which advocates for health coverage in the state. Under Medicaid’s new management, she says, the philosophy surrounding work requirements has changed.

“I don’t know if it jibes with my view of Medicaid, but my view of Medicaid now is irrelevant,” she says. “It’s what Seema Verma and the administration and the folks who are at CMS decide.”

Thomas says she is taking more of a wait and see approach — the details of the work requirement have yet to be ironed out. She says if too many people lose insurance, she’ll be raising concerns with the state.

This story is part of NPR’s reporting partnership with Side Effects Public Media, WFYI and Kaiser Health News.

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