On his first day in office, as part of his mission to dismantle the Affordable Care Act, President Trump signed an order promising to give states flexibility “to create a more free and open healthcare market.”

The administration on Thursday released an official set of examples to help states flex these powers.

It is intended to roll back key elements of Obama-era requirements, which were designed to promote enrollment in ACA plans that cover a broad range of medical needs and meet uniform national standards.

Seema Verma, the Centers for Medicare & Medicaid Services administrator, said those strict rules were seen by many as burdensome, and “virtually impossible” for states to meet.

Instead, the Trump administration wants states to innovate in ways that could produce more lower-cost options, even if those alternatives do not provide the same level of financial or medical coverage as an ACA plan.

“I’m confident states will come up with ideas that will work better,” said Verma.

Still, coupled with other ongoing efforts by the Trump administration to gut Obamacare, policy experts predict the ideas would further foster a parallel market of cheaper, less robust coverage that could draw younger or healthier consumers, but drive up premiums for those who remain in ACA market plans.

“Invariably, the coverage is going to be more expensive for people who really need comprehensive coverage,” said Timothy Jost, a retired Washington and Lee University law professor who follows the ACA closely.

States could change who gets subsidies

One of the biggest changes signaled by the administration involves allowing states to revamp how federal subsidies are used. Currently, these subsidies are strictly targeted to lower-income Americans and are seen as key to bolstering enrollment in marketplace plans.

The Trump guidance would give states wider latitude to expand or narrow the income range eligible for subsidies, target them toward younger people or allow them to be used for less costly but skimpier types of insurance.

This would “potentially upend the subsidy structure,” said Sabrina Corlette, a research professor at Georgetown University’s Health Policy Institute.

Another example would, for the first time, make federal subsidy money available to people who get job-based insurance, countering Obama-era rules that generally prohibited that. It would let states use federal dollars to fund accounts consumers could use to buy insurance or pay other health costs, such as deductibles or copayments. Employers or consumers could also add additional funds to these accounts.

Still, managing those accounts would be a large administrative expense for a state to oversee, said Corlette. “I don’t understand why a state would want to set it up,” she added.

Supporters of Trump’s plan say the examples unveiled Thursday would give consumers more control over how they choose to spend their health care dollars and the types of coverage they want to buy. They say it might also improve the markets, which are seeing declining enrollment as premiums rise.

“If states can provide larger subsidies to younger individuals to attract them to enroll, that will improve the market overall,” said Christopher Condeluci, a Washington, D.C., attorney who specializes in employee benefits and has served as the tax and benefits counsel to the U.S. Senate Finance Committee.

However, if many states follow the administration’s lead, critics say, it would bring back the days when insurance rules varied widely state by state. Consumers could end up buying skimpier plans that leave them vulnerable to high, unexpected medical bills.

While not prescriptive, the examples are designed to encourage states to innovate and apply for permission to offer more choices for consumers, so long as the proposals don’t cost taxpayers more and don’t reduce access to ACA plans, said Verma.

State proposals would still have to be affordable, comprehensive and not raise the federal deficit, she said. And CMS would pay particular attention to potential effects on low-income Americans, she added.

Reshaping the individual insurance market

The administration’s examples focus on states’ health marketplaces, where insurance plans are designed for small businesses and for individuals who don’t get job-based coverage. An estimated 14 million people buy their own coverage through those markets or through brokers.

Premiums in those markets have risen substantially since the law took effect in 2014, for a variety of reasons. Among those reasons are lower-than-expected enrollment by healthy people; actions taken by Congress and the Trump administration that removed the tax penalty for failing to have coverage; and other moves that eliminated some payments to insurers and loosened restrictions on alternative types of insurance plans.

The administration’s examples add a new twist to a provision of the ACA that gave states the option of seeking a federal waiver to develop alternative marketplace proposals.

To get a waiver under Obamacare rules, however, states have to meet four “guardrails” established in 2015. These require states to ensure their proposals would provide equally comprehensive and affordable coverage; would not result in fewer people enrolling; and wouldn’t increase costs for taxpayers.

The examples described Thursday — touted as “waiver concepts” by the Trump administration — build on the administration’s guidance issued in late October to loosen those guardrails.

That October guidance, to take effect in 2020, says states have to provide access to affordable and comprehensive coverage, but will not be held to a strict tally of how many people actually enroll. So long as a state could show that equal numbers of people were buying some kind of coverage — either comprehensive ACA plans or less expensive but skimpier plans — the state’s approach could pass the test.

That October announcement, and Thursday’s concepts, drew immediate criticism from ACA supporters, who said it encourages the use of subsidies to buy short-term plans, which aren’t as comprehensive as ACA coverage and can bar people who have preexisting conditions.

Congressional Democrats sent a letter to top administration officials this week, saying the process by which the changes are being made is illegal, because the administration is not following a formal rule-making process.

“We believe this sub-regulatory guidance exceeds the Secretaries’ statutory authority,” wrote Ways & Means ranking member Richard Neal, D-Mass., and Energy and Commerce ranking member Frank Pallone Jr., D-N.J. “It appears to be part of the administration’s ideologically motivated efforts to sabotage the ACA.”

The Brookings Institution and other experts have raised similar questions and predicted a legal challenge.

“As soon as any state proceeds to go somewhere with this, there will be legal challenges,” said Jost.

Verma pushed back against this warning, noting that the Obama administration also issued its “guardrails” as guidance, not a formal rule.

Verma said she anticipated that critics would say the ideas would adversely affect people with preexisting medical conditions.

Those critics argue that anything that draws younger and healthier people out of the market will drive up costs for those who remain in ACA plans — including those with medical conditions, who might be barred from buying an alternative policy, such as a short-term plan.

But Verma said that “nothing in this guidance would take away protections from people with preexisting conditions.”

Kaiser Health News, a nonprofit news service covering health issues, is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

Let’s block ads! (Why?)

After years of steady decline, the number of U.S. children without health insurance rose by 276,000 in 2017, according to a Georgetown University report released Thursday.

While not a big jump statistically — the share of uninsured kids rose to 5 percent in 2017 from 4.7 percent a year earlier — it is still striking. The uninsured rate typically remains stable or drops during times of economic growth. In September, the U.S. unemployment rate hit its lowest level since 1969.

“The nation is going backwards on insuring kids and it is likely to get worse,” says Joan Alker, co-author of the study and executive director of Georgetown’s Center for Children and Families.

Alker and other advocates for children’s health place the blame for this change on the Trump administration and the Republican-controlled Congress, saying the Republican policies and actions have cast a pall on enrollment in health plans.

The number of children in the United States without coverage rose to 3.9 million in 2017 from about 3.6 million a year earlier, according to census data analyzed by Alker’s Georgetown team.

The overall uninsured rate for people of all ages — which plummeted from 2013 to 2016 following the health law’s implementation — remained unchanged at 8.8 percent last year.

The share of children with employer-sponsored health coverage rose modestly in 2017, Alker says, but not by enough to make up for the drop in children enrolling in Medicaid or getting coverage from Obamacare insurance exchanges.

While no states made significant strides in reducing the percentage of children who are uninsured, nine states saw their numbers go the wrong way. The largest negative changes occurred in South Dakota (where the rate of uninsured kids rose from 4.7 percent to 6.2 percent), Utah (up from 6 percent to 7.3 percent) and Texas (from 9.8 percent to 10.7 percent).

More than 1 in 5 uninsured children nationwide live in Texas — about 835,000 kids — by far the highest number of any state.

Florida had 325,000 uninsured kids last year, as its uninsured rate for that age group rose 0.7 percentage points to 7.3 percent. California had 301,000 children without insurance — its number remained virtually unchanged, relative to the previous year.

Other states with significant increases were Georgia, South Carolina, Ohio, Tennessee and Massachusetts.

The uninsured rates for children increased at nearly triple the rates in states that did not expand Medicaid under the Affordable Care Act, according to the report. Studies have shown that children whose parents are insured are more likely to have health coverage.

Georgetown has been tracking these figures since 2008, when 7.6 million children — or about 10 percent of kids — lacked health coverage.

Because nearly all low-income children are eligible for Medicaid or the federal Children’s Health Insurance Program, the challenge is making sure parents are aware of the programs, Alker says, and getting the kids enrolled and keeping them signed up as long as they are eligible.

Congress let the CHIP program funding lapse for several months in 2017, putting states in a position of having to warn families that enrollment would soon be frozen. Congress restored federal funding in early in 2018.

In addition, low-income families were bombarded by news reports last year that Congress was threatening to repeal the health law that expanded coverage to millions. And, in the past two years, the Trump administration has slashed funding for Obamacare navigators who help people sign up for coverage.

Alker points to the Trump administration’s September proposal, known as the “public charge” rule as another factor that may have led to fewer children getting health insurance. The rule could make it harder for legal immigrants to get green cards if they have received certain kinds of public assistance — including Medicaid, food stamps and housing subsidies. Green cards allow these legal migrants to live and work permanently in the United States.

OLE Health, a large health provider based in Napa Valley, Calif., that serves many immigrants, says it has seen patients leave the Medicaid rolls in the past year. CEO Alicia Hardy says many have dropped coverage over fears the help could jeopardize their immigration status.

“They are afraid of being deported,” she says.

All those events may have deterred families from getting their kids covered.

“The welcome mat has been pulled back,” Alker says, “and as a result we see more uninsured children.”

She says the easiest way to change the trend would be for more states to expand Medicaid under the health law. Fourteen states have yet to do so. Though the expansion largely affects adults, as parents enroll, their children are likely to follow.

Kaiser Health News, a nonprofit news service, is an editorially independent program of the Kaiser Family Foundation, and not affiliated with Kaiser Permanente. KHN’s coverage of children’s health care issues is supported in part by a grant from the Heising-Simons Foundation.

Let’s block ads! (Why?)

Shereese Hickson’s multiple sclerosis was flaring again. Spasms in her legs and other symptoms were getting worse.

She could still walk and take care of her son six years after doctors diagnosed the disease, which attacks the central nervous system. Earlier symptoms such as slurred speech and vision problems had resolved with treatment, but others lingered: She was tired and sometimes fell.

This summer, a doctor switched her to Ocrevus, a drug approved in 2017 that delayed progression of the disease in clinical trials better than an older medicine did.

Genentech, a South San Francisco, Calif.-based subsidiary of Swiss pharmaceutical giant Roche, makes Ocrevus. The drug is one of several for multiple sclerosis that are delivered intravenously in a hospital or clinic. Such medicines have become increasingly expensive, priced in many cases at well over $80,000 a year. Hospitals delivering the drugs often make money by charging a premium on top of their cost or adding hefty fees for the infusion clinic.

Hickson received her first two Ocrevus infusions as an outpatient two weeks apart in July and August. And then the bill came.

Patient: Shereese Hickson, 39, single mother who worked as a health aide and trained as a medical coder, living in Girard, Ohio. Because her MS has left her too disabled to work, she is now on Medicare; she also has Medicaid for backup.

Total bill: $123,019 for two Ocrevus infusions taken as an outpatient. CareSource, Hickson’s Medicare managed care plan, paid a discounted $28,960. Hickson got a bill for about $3,620, the balance calculated as her share by the hospital after the insurance reimbursement.

Medical service: Two Ocrevus infusions, each requiring several hours at the hospital.

Service provider: Cleveland Clinic, a nonprofit, academic medical center based in Ohio. (Cleveland Clinic has provided financial support for NPR.)

What gives: Hickson researched Ocrevus online after her doctor prescribed the new medicine. “I’ve seen people’s testimonies about how great it is” on YouTube, she said. “But I don’t think they really go into what it’s like receiving the bill.”

That was particularly shocking because, covered by government insurance for her disability, she had never received a bill for MS medicine before.

“I have a 9-year-old son and my income is $770 a month,” said Hickson. “How am I supposed to support him and then you guys are asking me for $3,000?”

Even in a world of soaring drug prices, multiple sclerosis medicines stand out. Over two decades ending in 2013, costs for MS medicines rose at annual rates five to seven times higher than those for prescription drugs generally, found a study by researchers at Oregon Health & Science University.

“There was no competition on price that was occurring,” said Daniel Hartung, the OHSU and Oregon State University professor who led the study. “It appeared to be the opposite. As newer drugs were brought to market, it promoted increased escalation in drug prices.”

With Ocrevus, Genentech did come up with a price that was slightly less than for rival drugs, but only after MS medicines were already extremely expensive. The drug launched last year at an annual list price of $65,000, about 25 percent lower than that of other MS drugs, Hartung said. MS drugs cost about $10,000 per year in the 1990s and about $30,000 a decade ago.

“We set the price of Ocrevus to reduce price as a barrier to treatment,” said Genentech spokeswoman Amanda Fallon.

It was also probably a response to bad publicity about expensive MS drugs, Hartung said. “Now companies are very aware at least of the optics of releasing drugs at higher and higher prices,” he said.

Patients starting Ocrevus get two initial infusions of 300 milligrams each and then 600 milligrams twice a year. Cleveland Clinic charged $117,089 for Hickson’s first two doses of Ocrevus — more than three times what hospitals typically pay for the drug, said John Hennessy, chief business development officer at WellRithms, a firm that analyzes medical bills for self-insured employers.

As is typical of government programs such as Medicare, the $28,960 reimbursement ultimately collected by the Cleveland Clinic was far less — but still substantial.

“We kind of got ourselves in a pickle here,” he said. “We’re more excited about the discount than we are about the actual price.”

Hickson’s nearly $3,620 bill represented the portion that Medicare patients often are expected to pay themselves.

Last year, the Institute for Clinical and Economic Review, an independent nonprofit that evaluates medical treatments, completed a detailed study on MS medicines. It found that Ocrevus was one of three or four medicines that were most effective in reducing MS relapses and preventing MS from getting worse. But it also found that patient benefits from MS drugs “come at a high relative cost” to society.

At the same time, deciding which MS drug — there are about a dozen — would best suit patients is something of a shot in the dark: The science showing the comparative effectiveness of MS drugs is not as strong as it could be, researchers say.

“In general, there’s a real lack of head-to-head studies for many of these drugs,” said Hartung. The [Food and Drug Administration] has no required comparison standard for MS drugs, an agency spokeswoman said. Sometimes they’re rated against placebos. With everyone able to charge a high price, the companies have little incentive to see which works better and which worse.

Resolution: After Hickson questioned the charges over the phone, the billing office told her to apply to the hospital for financial assistance. Hickson had to print a form, provide proof of her disabled status, mail it and wait.

Hospital officials told her in October she qualified for assistance based on her income through a state program funded by hospital contributions and federal money. Cleveland Clinic wiped out the $3,620 balance.

“I’m grateful that they approved me for that, but not everybody’s situation is like that,” she said. She was worried enough about being billed again for her next Ocrevus infusion that she considered switching back to her old medicine. But her doctor wants her to give it more time to gauge its effects.

The takeaway: Always ask about charity care or financial assistance programs. Hospitals have different policies and wide discretion about how to apply them, but they often do not even tell patients such programs exist.

Because health care costs can be so high, you may be eligible even if you have a decent salary. Cleveland Clinic gives free care to everybody below a certain income, said spokeswoman Heather Phillips. But it wasn’t until Hickson called that the hospital agreed to erase the charge.

While there are multiple new drugs to treat serious chronic conditions, they have often not been tested against one another. Moreover, your doctor may have no idea about their prices. But he or she should.For newer drugs, all options may well be very expensive.

Keep in mind that drugs that must be infused often come with facility fees and infusion charges, which can leave patients with hefty copayments for outpatient treatment. Ask about oral medicines or those you can self-inject at home.

NPR produced and edited the interview with Kaiser Health News’ Elisabeth Rosenthal for broadcast. Marlene Harris-Taylor, from member station Ideastream in Cleveland, provided audio reporting.

Do you have an exorbitant or baffling medical bill that you’d like KHN and NPR to look into? You can tell us about it and submit a copy of the bill here.

KHN is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that isn’t affiliated with Kaiser Permanente.

Let’s block ads! (Why?)

Doctors who are opposed to abortions don’t have to provide them. Since the 1970s, a series of federal rules have provided clinicians with “conscience protections” that help them keep their jobs if they don’t want to perform or assist with the procedure.

Religious hospitals are also protected. Catholic health care systems, for example, are protected if they choose not to provide abortions or sterilizations. Doctors who work for religious hospitals usually sign contracts that they’ll uphold religious values in their work.

But as the reach of Catholic-affiliated health care grows, these protections are starting to have consequences for doctors who do want to perform abortions — even as a side job.

Religious hospitals often prohibit their doctors from performing abortions — even if they do so at unaffiliated clinics, says Noel León, a lawyer with the National Women’s Law Center. León was hired about two years ago to help physicians who want to be abortion providers. They have little in the way of legal protection, she says.

“Institutions are using the institutional religious and moral beliefs to interfere with employees’ religious and moral beliefs,” León says.

This kind of legal argument, León says, may prevent doctors from providing care they feel called to offer. And since many clinics that provide abortions rely heavily on part-time staff, it may also prevent these clinics from finding the doctors they need to stay open.

Dr. Kimberly Remski sought help from León when she was job hunting. She is a primary care physician but had always been interested in women’s health. When she first set foot in a clinic that provides abortions, she realized it was her passion.

“A lot of the things we spend our time doing in training are monotonous, or you’re getting swamped in work,” she says. “I just remember leaving the clinic feeling like I was doing something really important.”

She interviewed for a job as a primary care doctor with IHA, one of the largest physician groups in Michigan, in 2017. She says she was clear about her desire to work one day a week in an independent clinic that provides abortions.

Part-time work is common for outpatient physicians, and Remski says the doctors she interviewed with were receptive.

“I was very upfront. I told that them that was a special interest of mine. I wanted to be able to pursue it,” she says.

She signed a contract, and started preparing for her move. Then she got a call that the offer was off.

Remski learned that her potential employer was actually owned by a larger Catholic hospital network called Trinity Health, and it requires physicians to “provide services in a manner consistent with the Ethical and Religious Directives for Catholic Health Care Services,” according to her contract.

And, she says, she was shocked to learn Trinity Health would also have had a say over how she spent her free time. IHA officials told her that she couldn’t work on the side as an abortion provider if she took the job, Remski says.

Trinity Health had merged with IHA in 2010, part of a wave of mergers that has led to a net increase in Catholic ownership of hospitals. According to a 2016 report from MergerWatch, an organization that tracks hospital consolidation, 14.5 percent of acute care hospitals are Catholic-owned or affiliated. That number grew by 22 percent between 2001 and 2016, while the overall number of acute care hospitals dropped by 6 percent.

And as Catholic-affiliated health care expands, says León, doctors increasingly encounter morality clauses that prohibit them from performing abortions.

León says she has worked with at least 30 physicians and nurse practitioners from 20 different states who faced problems similar to Remski’s when they disclosed to their employers, or potential employers, that they planned to provide abortions.

“They’re being told, ‘We can’t provide the care we went into medicine to provide,’ ” León says. “We shouldn’t be putting providers in the position of caring for their patients or keeping their jobs.”

Representatives of IHA would not agree to a phone interview about Remski’s situation, but spokesperson Amy Middleton explained in an email that IHA “works hard with our physicians to enable them to pursue other positions.” But, she added, “outside work that interferes with a physician’s ability to serve patients or contradicts the organization’s practices could present a conflict of interest.”

IHA physicians follow Catholic health care guidelines, Middleton wrote, which requires that physicians “not promote or condone contraceptive practices.”

Dr. Barbara Golder, the editor of the Catholic Medical Association journal, Linacre Quarterly, says that language about morality is ubiquitous in contracts — and that it is reasonable that religious institutions might not want to be associated with abortion providers.

“The person is seen primarily as Dr. X of Catholic hospital Y, and then it turns out that Dr. X of Catholic hospital Y is doing abortions on the weekends,” Golder says. “There’s sort of a cognitive dissonance about that. It’s in opposition to what Catholic health care is.”

According to Lance Leider, a Florida attorney who has reviewed hundreds of physician contracts, it is “exceedingly common” for contracts, not just at religiously affiliated hospitals, to include language about the reasons an employer can fire a doctor, including but not limited to morality clauses.

“There’s always a laundry list of things the employer can terminate the contract for,” Leider says. “There’s usually a catch-all. Anything that calls into question the reputation of the practice.”

These clauses tend to be vague, León adds, which means employers can invoke them to prevent a wide range of activities, like political activity, controversial posts on social media or, in religious hospitals, physicians spending time at clinics that provide abortions.

The restrictions may have ramifications not only for physicians but for many clinics that provide abortions. Smaller clinics may be staffed almost entirely with part-time doctors, and when they can’t find enough, they’re sometimes left unable to meet the demand for services.

“We don’t have full-time doctors,” says Shelly Miller, the executive director of Scotsdale Women’s Center in Detroit, one of the clinics where Remski worked. “We really cannot afford to have a provider sit here all day and wait for patients to come in.”

Through her involvement with the National Abortion Federation, Miller often talks with other directors of small clinics that provide abortions and sometimes other women’s health services. She says that many of her counterparts say they exclusively hire part-time physicians because they simply don’t need somebody full time. If more physicians are prohibited from part-time abortion work, it may put some smaller clinics out of business, Miller worries.

It’s hard to know exactly how many of these clinics primarily use part-time staff, according to Rachel Jones, who studies the demographics of U.S. abortion services at the Guttmacher Institute, a family planning research organization. Ninety-five percent of abortions take place in clinics as opposed to hospitals, Jones notes, which may be more likely to utilize a team of part-time staff.

León doesn’t have data to show how common it is for physicians to be threatened with termination for providing abortions. She guesses that doctors will either give up on providing abortions — or, like Remski did, look for a different job that allows them to. León spends much of her time speaking to groups of doctors about how to approach contract negotiation if they want to provide abortions.

Ultimately, Remski says, she parted amicably from IHA, since “it felt like the wrong place for me.”

She ended up finding a job at an urgent-care clinic in Michigan, which allowed her to work part time at three separate clinics that provide abortions. She has since moved to Chicago, where she also splits her time between providing abortions and primary care.

“I was providing a service that was needed and necessary,” Remski says. “I realized it was something I really needed to do.”

Mara Gordon is a family physician in Washington, D.C., and a health and media fellow at NPR and Georgetown University School of Medicine.

Let’s block ads! (Why?)

Named from the Greek kloster, for spindle, a class of bacteria known as Clostridia abounds in nature.

Staining deep violet under the microscope, they appear as slender rods with a bulge at one end, like a tadpole or maple seed. They thrive in soil, marine sediments and humans. They live on our skin and in our intestines.

And sometimes, they can kill you.

Most strains are harmless, but tetanus, botulism and gangrene are caused by clostridial species. Vaccination, sanitation and improved medical care have made these infections less common, but one variety has been difficult to contain.

Clostridium difficile, or C. diff, can cause diarrhea and a life-threatening infection of the intestines. The bug was associated with nearly 30,000 deaths in 2011.

First seen as a problem mainly confined to hospitals and nursing homes, research suggests C. diff rates in the community are on the rise, and that traditional risk factors may no longer tell the whole story.

C. diff was discovered in 1935 by scientists in Denver in the intestinal flora of healthy infants. The bacterium was harmless to the infants but proved lethal when injected into rabbits, providing an early clue to its danger.

At the same time, scientists in the United Kingdom were pioneering the use of penicillin to treat bacterial infections. The drug’s efficacy was near miraculous, but some patients developed severe diarrhea as a side effect. As antibiotics became widely available in the 1950s, this adverse effect became more common.

Early researchers speculated that Staphylococcus aureus, a common pathogen, was the cause. The usual treatment for staph is the antibiotic vancomycin, and many patients improved. But the true cause was C. diff — it was a stroke of simple luck that vancomycin is effective against both.

In 1974, scientists in Cincinnati discovered a toxin in affected patients’ stool, and traced it to C. diff.

A surge of interest in C. diff followed, and investigators quickly determined risk factors for the disease. Antibiotic use was already known, but hospitalization emerged as another dominant factor — so much so that C. diff became known almost exclusively as a hospital-acquired infection.

Clostridial species can revert to hardy spores that resist disinfectants, which is why so many infections occurred in hospitals and nursing homes. Health care workers were unknowingly spreading the spores and inoculating patients.

Scientists also began to ask why antibiotics triggered the infection. The answer appeared to be simple ecology. In healthy intestines, the sheer diversity of bacteria meant that C. diff couldn’t establish a foothold for out-of-control growth. But once a round of antibiotics had purged the normal flora, C. diff could take over.

Improved infection control in hospitals began to cut infection rates, but a few studies suggested that the problem might be bigger than anyone realized.

In 1991, Australian scientists found that C. diff was responsible for 5.5 percent of outpatient diarrheal infections, and researchers in Boston published additional evidence of community-acquired C. diff in 1994. Subsequent work confirmed the existence of C. diff in the community but suggested that the prevalence was low.

Things changed in 2006, when a hospital in North Carolina reported that 35 percent of C. diff infections were occurring outside the hospital, and that only half could have involved antibiotic exposures. A Centers for Disease Control and Prevention investigation, using different methods, found that 20 percent of infections had no recent health care exposure and only half had antibiotic exposure.

Work published in 2011 found that 40 percent of all C. diff infections in southern Minnesota were community-associated. Even more concerning, the investigators noted a marked increase over time of community-associated C. diff.

The CDC estimated that nearly 350,000 C. diff infections occurred outside of hospitals in 2011, and found that 46 percent were fully community-acquired and 36 percent had no antibiotic exposure. And just last year, researchers in California found that 1 in 10 emergency room patients with diarrhea tested positive for C. diff, and that 40 percent had no risk factors at all.

Traditional risk factors — antibiotics and hospitalization — can no longer explain many infections. Scientists have long suspected that antibiotics trigger C. diff infections by disrupting the intestinal microbiome.

Could it be that other factors are having a similar effect? Is our microbiome growing more susceptible to these dangerous infections?

Dr. Alice Guh, a researcher with the CDC, thinks so. “There’s definitely something going on,” she says, “but we don’t fully understand what.”

Diet strongly influences the microbiome and could be an element, she says. A recent study found that trehalose, a common food additive, markedly enhances the virulence of C. diff, although Guh cautions that there have been difficulties replicating the findings.

Guh thinks some common medications could be involved, too. Popular drugs for heartburn that suppress acid in the stomach are associated with C. diff infections, and have been shown to disrupt the microbiome.

And in March a study in Nature evaluated the effects of a thousand non-antibiotic medications on friendly bacteria in the human colon and found that 25 percent had antimicrobial activity.

Rising rates of C. diff infection in the community are a major public health concern. But could they be a sign of an even larger problem—that our guts are becoming ever more fragile? Scientists have already uncovered links between changes in the microbiome and a slew of other human diseases.

Perhaps C. diff is just a canary in the mine.

Clayton Dalton is a resident physician at Massachusetts General Hospital in Boston.

Let’s block ads! (Why?)

The tiny hand and forearm slipped out too early. Babies are not delivered shoulder first. Dr. Terri Marino, an obstetrician in the Boston area who specializes in high-risk deliveries, tucked it back inside the boy’s mother.

“He was trying to shake my hand and I was like, ‘I’m not having this — put your hand back in there,’ ” Marino would say later, after all 5 pounds, 1 ounce of the baby lay wailing under a heating lamp.

This is the story of how that baby, Bryce McDougall, tested the best efforts of more than a dozen medical staffers at South Shore Hospital in Weymouth, Mass., one day last summer.

Bryce’s birth also put to the test a new method of reducing cesarean sections that has been developed at Dr. Atul Gawande’s Ariadne Labs, a “joint center for health systems innovation” at Brigham and Women’s Hospital and the Harvard T.H. Chan School of Public Health in Boston.

The story starts before Bryce’s birth, on the last day of August at about 9:30 in the morning.

Melisa McDougall has just checked into South Shore, after a routine ultrasound. She’s in her 36th week, pregnant with twin boys. The doctors have warned Melisa that her placenta won’t hold out much longer. She’s propped up in bed, blond hair pulled into a neat bun, makeup still fresh, ordering a sandwich, when her regular obstetrician arrives.

“How are you?” asks Dr. Ruth Levesque, sweeping into the room and clapping her hands. “You’re going to have some babies today! Are you excited?”

The first of the twins — Brady — is head-down, ready for a normal vaginal delivery. But his brother, Bryce, is horizontal at the top of Melisa’s uterus.

That’s one reason Melisa is a candidate for a C-section. Babies do not come out sideways. And there’s another reason most doctors would never consider a vaginal delivery in Melisa’s case, Levesque says. Four years ago, she delivered the twins’ sister by cesarean.

“[Melisa] has a scar on her uterus,” Levesque explains, “so there’s a risk of uterine rupture — very rare, but there’s always a possibility.”

And that possibility may be greater for Melisa because she’s 37 years old and having twins. But the McDougalls hope to have vaginal deliveries for both boys.

“I just feel like it’s better for the kids — better for the babies,” Melisa says.

How the Team Birth Project came to be

Avoiding C-sections is also better for many moms. With cesareans, there’s a longer recovery period, a greater risk of infection and an association with injury and death. And most are not medically necessary, says Dr. Neel Shah, who directs the Delivery Decisions Initiative at Ariadne Labs.

“We’re fairly confident that, when you look nationally, the plurality — if not the majority — of C-sections are probably avoidable,” says Shah.

Those avoidable C-sections are the focus of the Team Birth Project, designed by Shah with input from roughly 50 doctors, nurses, midwives, doulas, public health specialists and consumer advocates who focus on childbirth. South Shore Hospital is one of the pilot sites for the project.

In describing the collaboration, Shah begins with an acknowledgement: Childbirth is complicated. You’ve got two patients — the mother and the baby — and an ad hoc, often shifting team that at a minimum includes the mom, a nurse and a doctor.

“So you’ve got three people who have to come together and become a very high-performing team in a really short period of time, for one of the most important moments in a person’s life,” Shah says.

And this team has to perform at its best during an unpredictable event: labor.

Shah says doctors and nurses generally agree about three things: when a mom is in active labor; when a mom can definitely try for a vaginal delivery; and when she must have a C-section.

“And then there’s this huge gray zone,” Shah says. “And actually, everything about the Team Birth Project is about solving for the gray.”

To avoid unnecessary C-sections when what to do isn’t clear, this hospital, in conjunction with the Ariadne project, has changed the way labor and delivery is handled from start to finish.

First, women aren’t admitted until they are in active labor. Secondly, the mom’s preferences — such as whether she would like an epidural or not and whether she wants to have “skin-to-skin contact” with the baby immediately after birth — help guide the members of the labor team. The team members map the delivery plan — including Mom’s preferences and the medical team’s guidance — on a whiteboard, like the one in Melisa’s room.

For the births of Bryce and Brady McDougall, the white erasable planning board gets a lot of use.

Under “team,” Dr. Levesque and registered nurse Patty Newbitt write their names. Melisa and Shaun McDougall are also listed as equal partners. The names of other family members or nurses may be added and erased as labor progresses. Shah’s idea is that this team will “huddle” regularly throughout the labor to discuss the evolving birth plan.

The birth plan itself is divided into three separate elements on the board: maternal (the mom), fetal (the baby) and progress (in terms of how the labor is progressing). A mom with high blood pressure may need special attention — and that would be noted on the board — but she could still have a normal labor and vaginal delivery.

Good communication is key

Dr. Kim Dever, who chairs the OB-GYN department at South Shore, highlights a section of the whiteboard called “Next Assessment.”

That category is included on the board, Dever says, “because one of the things I often heard from patients is that they didn’t know what was going to happen next. Now they know.”

Asking the mom — and the couple — about their preferences for the delivery is crucial, too, Levesque says.

“It forces us to stop and to think about everything with the patient,” she explains.”It makes us verbalize our thought process, which I think is good.”

Shaun McDougall walks across the room to get a closer look at the whiteboard.

“Honestly, it seems like common sense,” he says. “I would always think the nurses would have something like this, but to have it out where mom and dad can see it — I think it’s pretty cool.”

With Melisa McDougall’s plan in place, everyone settles in, to wait. About four hours later, Melisa isn’t yet feeling contractions. Levesque breaks the water sac around Brady.

“Looks nice and clear,” Levesque reports. “Hey bud, come on and hang out with us,” she says to the baby, tickling his head.

“So, you’re going to keep leaking fluid until you leak babies,” the doctor explains to Melisa. “Whenever you start getting uncomfortable, we’ll get you an epidural at that point.”

Levesque moves to the board and adds updates: Melisa is 4 centimeters dilated; her waters broke at 13:26; the next assessment will be after she gets an epidural.

The medical team insisted ahead of time that Melisa agree to be numbed from the waist down if she wants to deliver Bryce — the second twin — vaginally. Melissa agreed. The obstetricians may need to rotate the baby in her uterus, find a foot and pull Bryce out, causing pain most women would not tolerate.

One of those doctors — Marino — peeks into the room and waves.

“Just came to say hi,” says Marino, who has more experience than most obstetricians in delivering babies positioned like Bryce. Along with Levesque, Marino has been seeing Melisa regularly in office visits.

Shaun McDougall asks the physicians if they’ll pose for a picture with his wife.

“Can we make funny faces?” asks Levesque.

“I want you to,” says Shaun. “You guys are like her favorite people on the planet.”

As the hours tick by, there’s a shift change, and registered nurse Barbara Fatemi joins the McDougall team. She checks Melisa’s pain level regularly to determine when she’s ready for the epidural.

Melisa says she isn’t feeling much but adds that she has a high tolerance for pain. Shaun tells Fatemi he sees the strain on his wife’s face. Fatemi acts on Shaun’s assessment and calls an anesthesiologist to prepare the epidural, something Shaun later says reinforces his feeling that they’re a team.

Levesque soon arrives for the promised “next assessment.” Melisa is now 10 centimeters dilated and ready to deliver — but she must hold on until nurses can get her into an operating room.

Levesque will still attempt to deliver both babies vaginally, she explains, but in the operating room, Melisa will be in the right place if Bryce doesn’t shift his position inside the uterus, and the doctor needs to do a last-minute cesarean.

“I’ll see you in a few minutes. No pushing without me, OK?” Levesque says over her shoulder as she heads to the operating room to prep.

“I’ll try,” Melisa says, weakly. In a minute, nurses are rolling her down the hall, following Levesque.

Almost five years ago, two women who were wheeled into this hospital’s operating rooms during childbirth died after undergoing C-sections. Though state investigators found no evidence of substandard care, Dever says the hospital scrutinized everything.

“When you have something like that happen, that expedites your efforts,” she says. “Exponentially.”

Now, Dever says, she sees an opportunity, through the Team Birth Project, to model changes that could help women far and wide.

“I would love women everywhere to be able to come in and have a safe birth and healthy baby,” she says. “That’s why I’m doing it.”

“They did not flinch”

Dever is about to see her pilot study of the Team Birth Project pushed to new limits by little Bryce McDougall. First, though, Melisa must deliver Bryce’s brother, Brady. Even his birth, the one that was expected to be easier, is more difficult than anticipated.

Bent nearly in half, her face beet red, Melisa strains for five pushes. She throws up, then gets back to laboring. And suddenly, there he is.

“Oh my goodness, Brady, oh Brady,” wails Shaun. He follows a nurse holding his son over to a warmer.

Marino takes Shaun’s place next to Levesque, who has reached inside Melisa to get the next twin. Levesque’s mission is to grab Bryce’s feet and guide him out. But everything feels like fingers, not toes.

“That’s a hand,” she murmurs. “That’s a hand, too.”

Marino rolls an ultrasound across Melisa’s belly, hoping the scan will show a foot. But Bryce’s feet are out of sight and out of reach.

Marino has had more experience than most obstetricians with transverse babies, and this procedure, known as a breech extraction; she asks to try. She reaches into Melisa’s uterus while Levesque moves to Melisa’s right side and uses her forearm to shift Bryce and push him down. Dever, the head of obstetrics, has come into the room and takes over the ultrasound. At least six doctors and nurses encircle Melisa, whose face is taut. Shaun frowns.

“Babe, you OK?” he asks.

Melisa nods. Bryce’s heart rate is steady. But there’s still no sign of a foot. One little hand slips out and Marino nudges it back in.

“Open the table,” says Marino, her voice strained.

It’s open and ready, her colleagues say, referring to the array of sterile surgical instruments that Marino may soon need, to begin a C-section.

For 36 seconds, this room with more than a dozen adults grows oddly quiet. Everyone is watching Marino twist her arm this way and that, determined to find Bryce’s feet. Levesque leans hard into Melisa’s belly. Shaun bites his lip. Then Marino yanks at something — and her gloved, bloodied hand emerges, clenching baby Bryce by his two teeny legs.

“Oh babe, here he comes, here he comes — Woo!” squeals Shaun.

Shaun is overcome with emotion again. Melisa manages an exhausted giggle. Baby Bryce keeps everyone waiting a few more seconds and then howls.

Levesque starts to stitch up a small tear for Melisa, and Marino comes around to congratulate the new mom.

“He was fighting you, huh?” Melisa says, and laughs.

Outside the operating room, Levesque and Marino look relieved and elated. Both agree that most doctors would have delivered Bryce by C-section. But at South Shore, the McDougalls found a hospital that has challenged itself to perform fewer C-sections and a doctor with experience in these unusual deliveries — one who knew and respected the parents’ preference.

“They specifically wanted to have a vaginal delivery of both babies,” Marino says — and that was on her mind during the difficult moments.

Bryce was fine, says Marino, so the deciding factor for her was that Shaun and Melisa did not panic.

“They did not flinch — they were like, ‘Keep going,’ ” Marino recalls. “Sometimes the patient will say ‘stop,’ and then you have to stop.”

The babies’ father says he came close to requesting that, in the very last minute before Bryce was born.

“That part with the arm — it was pretty aggressive,” Shaun says.

But in that moment, he adds, the feeling that he and Melisa were part of the team made a difference.

“It made us more comfortable,” Shaun says, and that comfort translated to trust. “We trusted the decisions they were making.”

Melisa says she’s grateful for the vaginal delivery.

“I did not want to have a natural birth and a C-section,” she says. “That would be a brutal recovery.”

Instead, 30 minutes after Marino pulled Bryce out of her, Melisa is nursing Brady and talking with family members via FaceTime.

Next assessment for The Team Birth Project

South Shore began using the Team Birth approach in April. Three other hospitals are also pilot sites: Saint Francis in Tulsa, Okla.; EvergreenHealth in Kirkland, Wash.; and Overlake in Redmond, Wash. The test period runs for two years. In the first four months at South Shore, the hospital’s primary, low-risk C-section rate dropped from 31 percent to 27 percent — about four fewer C-sections each month.

Experts who contributed to the development of the Team Birth Project are anxious to see whether other hospitals can lower their rates of C-section and keep them down.

“Once you get past the early adopters, how do you demonstrate the benefits for others that aren’t willing to change?” asks Gene Declercq, a professor of community health sciences at Boston University School of Public Health.

Declercq notes that a few insurers are beginning to force that question, refusing to include in their networks hospitals that have high C-section rates, or high rates of other unnecessary, if not harmful, care.

Declercq says the project’s focus on communication in the labor and delivery room makes sense because many physicians decide when to perform a cesarean based on clinical habit or the culture of their hospital.

“If you can impact that decision-making process, you can perhaps change the culture that might lead to unnecessary cesareans,” says Declercq.

The federal government has set a target rate for hospitals: No more than 23.9 percent of first-time, low-risk mothers should be delivering by C-section. The U.S. average in 2016 was 25.7 percent.

The target was put in place because research has shown that if a woman’s first delivery is a C-section, her subsequent deliveries are highly likely to be C-sections, too — raising her (and her baby’s) risk for complications and even death.

This story is part of NPR’s reporting partnership with WBUR and Kaiser Health News.

Let’s block ads! (Why?)

In recent years, some cities, including Memphis and Phoenix, withered into health insurance wastelands, as insurers fled and premiums skyrocketed in the insurance marketplaces that were set up under the Affordable Care Act.

But today, as in many parts of the U.S., these two cities are experiencing something unprecedented: Insurance premiums are sinking and choices are sprouting.

In the newly competitive market in Memphis, for example, the cheapest midlevel “silver” plan for 2019 health coverage will cost $498 a month for a 40-year-old — a 17 percent decrease compared to last year.

And four insurers are now selling ACA policies in Phoenix. That’s the same market that then-presidential candidate Donald Trump highlighted in 2016 because all but one insurer had left the region — he called it proof of “the madness of Obamacare.”

Janice Johnson, a 63-year-old retiree in Arizona’s Maricopa County, which includes Phoenix, said her monthly premium for a high-deductible bronze plan will be $207 for 2019, instead of $270, because she is switching carriers.

“When you’re on a fixed income, that makes a difference,” said Johnson, who receives a government subsidy to help cover her premium. “I’ll know more in a year from now if I’m going to stick with this company. But I’m going to give them a chance, and I’m pretty excited by that.”

Looking across all 50 states, the premiums for the average “benchmark” silver plan, which the government uses to set subsidies, are dropping nearly 1 percent. And more than half of the counties in the 39 states that rely on the federal HealthCare.gov exchange are experiencing a 10 percent price decrease, on average, for their cheapest plan.

In most places, the declines are not enough to erase the price hikes that have accrued since the creation of the health care exchanges in 2014.

Instead, next year’s price cuts help to correct the huge increases that jittery insurers set for 2018 to protect themselves from anticipated Republican assaults on the markets. While Congress came up one vote shy of repealing the federal health law in the summer of 2017, Trump and Republicans in Congress did manage to strip away many of the structural underpinnings that induced people to buy plans and helped insurers pay for some of their low-income customers’ copayments and deductibles. Insurers responded with a 32 percent increase, on average, for 2018 plans.

“Insurers overshot last year,” said Chris Sloan, a director at Avalere, a health care consulting company in Washington, D.C. “We are nowhere close to erasing that increase. This is still a really expensive market with poor benefits when it comes to deductibles and cost.”

For 2019, the average premium for the benchmark silver plan will be 75 percent higher than it was in 2014, according to data from the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

When Republicans failed to kill the health law last year, they inadvertently may have made it stronger. Insurers banked hefty profits in 2018, and that attracted new companies to most ACA markets.

All these factors were especially influential in Tennessee, where the average benchmark premium is dropping 26 percent, according to an analysis by the federal government. That’s a bigger drop than in any other state.

Seventy-eight of 95 Tennessee counties had just one insurer for 2018. That monopoly allowed the insurer to set the prices of its plans without fear of competition, said David Anderson, a researcher at the Duke-Margolis Center for Health Policy in Durham, N.C. “They were massively overpriced,” Anderson said of all available policies.

But for the coming year, 49 Tennessee counties will have more than one insurer, with a few — like Shelby County, where Memphis is located — having four companies competing. There, Cigna dropped the price of its lowest-cost silver plan by 15 percent. Even then, Cigna was underbid by Ambetter of Tennessee, a company owned by the managed-care insurer Centene Corp.

“We’re finally at the point where the market is stabilized,” said Bobby Huffaker, the CEO of American Exchange, an insurance brokerage firm based in Tennessee. “From the beginning, every underwriter — [and] the people who were the architects — they knew it would take several years for the market to mature.”

Still, the cheapest Memphis silver premium is nearly three times what it was in 2014, the first year of the marketplaces. A family of four, headed by 40-year-old parents, will be paying $19,119 for all of next year unless they qualify for a government subsidy.

“The unsubsidized are leaving,” said Sabrina Corlette, a professor at Georgetown University’s Health Policy Institute. “They are finding these premiums unaffordable.”

The landscape in Phoenix is greatly improved from when Trump visited after the federal government announced a 116 percent premium increase for 2017; the number of insurers at that time had dropped from eight to one.

Now, three new insurers are entering Maricopa County. Meanwhile, Ambetter, the only insurer that offered plans for 2018, reduced its lowest price for a silver plan for next year by 12 percent — and it offers the cheapest such plan in the market.

Still, Ambetter’s plan is 114 percent above the least expensive silver plan offered there in the first year of the exchanges. And neither Ambetter nor any of the insurers coming into the market for 2019 offer as broad and flexible a choice of doctors and hospitals as consumers had back then, according to Michael Malasnik, a local broker.

Since the start of the exchanges, Malasnik said, insurers have “raised their rates by multiples, and they’ve figured out you have to be a very narrow network.”

Each plan in Phoenix for 2019 contains trade-offs, he said. Only Bright Health’s plan includes Phoenix Children’s Hospital. Ambetter’s plan includes the most popular hospital and doctor groups, Malasnik said. But those providers are not as conveniently located for people living in the southeastern corner of the county, and that makes other insurers’ plans more appealing for some customers.

“Geography is the name of the game this year,” Malasnik said.

Theresa Flood, a preschool teacher who lives outside Phoenix, said none of the provider networks of the plans she considered included her doctors, such as the specialist who treats her spine problems. She has had four surgeries, and a neurologist who monitors a cyst and benign tumor in her brain is also outside the network she ended up choosing.

“I have to establish care with a whole new spine doctor and establish care with a whole new neurologist if I want to follow up on these things,” said Flood, who is 59. “You’re going from ‘established care’ to ‘who in the heck am I going to see?’ “

The plan Flood ultimately chose would have been too expensive, except that she and her husband John, who is a minister, qualified for a $1,263-a-month subsidy that will drop the cost to $207 a month. That bronze plan from Ambetter carries a $6,550-per-person deductible; so Flood expects she’ll still have to pay out-of-pocket for her treatments and doctor visits unless she needs extensive medical attention.

“It’s gone from being able to have a plan that you could sort of afford and got some benefit from, to putting up with what you can afford and hoping nothing happens that you actually have to use your insurance,” she said. “At this point, I’ll take what I can get.”

Kaiser Health News, a nonprofit news service, is an editorially independent program of the Kaiser Family Foundation, and is not affiliated with Kaiser Permanente.

Let’s block ads! (Why?)

Tiffany Rowe, a 46-year-old life coach in the San Francisco Bay area, still remembers how it felt as a teenager to be hoisted onstage to dance with Michael Jackson during his Bad concert tour.

She was 15 and recovering from an excruciating round of treatment for severe idiopathic aplastic anemia — basically total bone marrow failure.

She had met Jackson in his greenroom before the concert, but she had been told that dancing with him — her real wish — wouldn’t be possible.

Until it was.

“I was in front of all of those people, and I could hear the roar, and I was calm,” she recalls. “I was doing what I wished to do. I felt exactly the way I needed to feel, at home and confident in my body. There had been part of me that felt pretty betrayed by my body, and I felt very at peace in my own skin again.”

The moment was transformative for Rowe, who credits the experience with aiding her recovery. A study published in the journal Pediatric Research suggests her experience may not be unique.

Researchers looked back at the cases of nearly 1,000 children with serious illnesses who were treated at Nationwide Children’s Hospital in Columbus, Ohio. Half the children had received wishes and the other half hadn’t.

The children granted wishes were substantially less likely to visit the emergency department or to have an unplanned hospital admission within two years as compared with children who hadn’t received wishes. (Researchers matched the children’s personal and disease characteristics in the study.)

“My hypothesis is that these kids, when they come back, are more engaged with their families and medical providers, and perhaps they’re more adherent to their treatment plan,” says the study’s lead author Dr. Anup D. Patel, section chief of neurology at Nationwide Children’s Hospital and an associate professor of pediatrics at Ohio State University College of Medicine in Columbus.

“What’s harder to quantify is this feeling of hope and having a break from your illness,” Patel says. “It gives them an ability to fight harder, and that’s harder to measure.”

That ineffable feeling is what mattered for Rowe. Her illness had been caught late. She likely wouldn’t have lived another month without treatment, she says. Even with treatment, her prognosis was three to six months.

She lacked a perfect match for a bone marrow transplant, and she was so sick that her doctors didn’t want to risk a potentially fatal transplant rejection. So she received a then-experimental therapy called antithymocyte globulin, today a common treatment for aplastic anemia.

“I remember my mom saying, ‘We don’t know how this ends, but we have to try,’ ” Rowe says. She received her first treatment in the fall of 1984 and entered remission, but she relapsed in the fall of 1987.

“For me, relapse had a deeper emotional toll. I understood what I was headed back into, the pain and uncertainty and fear,” Rowe says. “I felt a bit demoralized, like I had failed. I didn’t want to be sick anymore. I didn’t want to have to survive anything.”

It was around then that a volunteer who had read about Rowe in the local paper visited her and offered a wish. Rowe didn’t hesitate.

“When everyone else wanted to be an astronaut, I wanted to be a dancer and dance with Michael Jackson,” Rowe says. “When he moved, it just stopped time for me. As somebody who felt so passionately about dance myself and so elementally at home in my body while dancing, I just saw that in him and felt a kinship.”

Joining him onstage gave Rowe back ownership over her body — and her future.

“There was a sense that I was fighting for something, not just against something, and that was incredibly motivating,” she says. “I was surviving to go back and live a full and extraordinary life — not that I knew that would happen, but I could give myself permission to believe it was possible.”

To qualify for a wish, a child must have a life-threatening, but not necessarily terminal, condition, says Jamie Sandys, a spokesperson at Make-A-Wish Foundation. The foundation has more than 60 U.S.-based chapters and has granted more than 300,000 wishes since 1980.

The organization granted approximately 15,400 wishes last year, Sandys says. Still, an estimated 27,000 children are diagnosed annually with an illness that qualifies them, which concerns Sandys. “There’s a huge gap that we’re trying to fill,” Sandys says.

Many past wish recipients have said the wish was an important part of their healing process. “These wishes can really be a springboard to help these children in overcoming their illnesses and producing better health outcomes for them,” Sandys says.

But verifying and quantifying those outcomes is difficult.

“It’s wonderful to have randomized controlled trials and measurable outcomes, but when you’re looking at mind-body-spirit connection in medicine, we’re not going to have the luxury of those outcomes,” says Dr. James Fahner, a division chief for pediatric oncology at the Helen DeVos Children’s Hospital in Grand Rapids, Mich. Though not involved in the study, Fahner is the immediate past chair of the Make-A-Wish America Medical Advisory Council.

“I’m fundamentally a scientist, and I expect reasonable, reproducible metrics when I’m deciding on the validity of a particular cancer therapy, yet when I walk down the hall in that same clinic and see a child who has just returned from a wish, I see positive impacts like stronger adherence to therapy, family resiliency and hopefulness in the child,” Fahner says. “The connection of mind-body-spirit can be hugely important, especially in a child going through such a rigorous and long therapy.”

A previous study tried to measure the effects of wish-granting and found less distress, fewer episodes of depression and reduced anxiety symptoms among children expecting a wish in the near future compared with those placed on a waiting list.

This new study found more concrete differences, including cost savings. The average cost of a wish is $10,682, but multiple unplanned hospitalizations cost more. The study found that twice as many wish recipients had reduced health costs compared with people who didn’t receive them.

Patel was inspired to conduct this study after seeing changes in his own patients and before he joined the organization’s medical advisory council. He had one 15-year-old boy with intractable seizures return from meeting the Los Angeles Clippers and never have a seizure again — a dramatic if rare and unlikely outcome.

But Patel is also a scientist who believes in evidence. He knew his study would be scrutinized by others who doubted “that something as wishy-washy as a wish could make a difference.” He chose to measure use of health care services because it is quantifiable in a way that “wellness” isn’t.

All the children were treated at the same hospital by the same medical teams, though it’s unclear why some received a wish and some didn’t.

The researchers used medical records to identify 496 children who received a wish and compared them with 496 others with the same approximate age, gender, disease category and disease complexity. The distribution of private insurance, no insurance or Medicaid was also similar in both groups.

Cancer was the most common illness — at 45 percent — among the children studied. After that, the most frequent conditions were blood-related/kidney (16.5 percent), neurological (14.5 percent) or genetic (14 percent). The breakdown is consistent with national figures: 45 percent of Make-A-Wish recipients have cancer and 13.5 percent have a nervous system disorder, Sandys says.

The researchers found that wish recipients were 1.9 times more likely to have fewer emergency department visits and 2.5 times more likely to have fewer unplanned hospitalizations in the two years after their wish was granted, compared with matched children.

The study is observational, so it can’t show that receiving a wish caused better outcomes since other factors may have affected the results. But many health care providers see change in their patients after wishes are granted.

“More positivity can sometimes be correlated with treatment adherence,” says Ashley Andrews, a social worker at Children’s Mercy Hospital in Kansas City, Mo. Andrews wasn’t involved in the study but has connected children diagnosed with cystic fibrosis to Make-A-Wish.

The excitement of a wish can change a family’s and child’s outlook enough that they may work harder with their medical providers, she says. “If their adherence has improved, obviously that would decrease the emergency department visits and hospitalizations.”

But it’s also possible other factors affected emergency visits and hospitalizations in nonrecipients, such as the reasons some children didn’t receive wishes. Perhaps they weren’t well enough to travel and weren’t interested in nontravel wishes. Perhaps parents turned down a wish if they felt another family deserved it more.

Andrews also cautioned against too much optimism about the findings. “These kids still have a chronic illness and have to go through a lot of obstacles that you and I don’t have to go through,” Andrews says. “That’s their reality, so I don’t want people to think that just because these kids have Make-A-Wish that everything’s fine.”

Dr. Arthur Lavin, chair of the American Academy of Pediatrics Committee on Psychosocial Aspects of Child and Family Health, says the findings make sense to him, too. But he also cautions that a child’s worse health outcomes aren’t a “failure” of the wish or of positive thinking.

“We like to think you can only have improved health if you have an expensive medication, and those things can be critical to help, but being kind and caring to someone has an amazing impact on [their] health and well-being,” Lavin says.

But the measurement of the effect of kindness isn’t entirely clear or predictable, he notes. Even if such effects aren’t as quantifiable as other therapies, Patel sees their value in less quantifiable terms.

“I recognize on a daily basis that I’m not going to help get seizures gone in a majority of cases with traditional interventions, so I’m always looking for ways to help families beyond treatment,” Patel says. “Even if it’s just making a kid happy for a couple of weeks, that’s sometimes better than any medicine I can give them.”

Tara Haelle is a freelance health and science writer.

Let’s block ads! (Why?)

In a windowless classroom at the John J. Moran medium-security prison in Cranston, R.I., three men sit around a table to share how and when they began using opioids.

For Josh, now 39, it was when he was just 13 years old. “I got grounded for a week in my house, so I grabbed a bundle of heroin and just sat inside and sniffed it all week.”

“I started using heroin at 19,” says Ray, now 23. “I was shooting it. It was with a group of friends that I was working with, doing roof work.”

“At 26 years old, I experimented with heroin,” says Kevin, 50. “I wasn’t the person that I wanted to be. Once I put that in my system, I felt like this is what I’m supposed to do and this is what I’m supposed to feel like.”

This group therapy session is part of a $2 million program the Rhode Island Department of Corrections launched in 2016. These men are all serving prison sentences for crimes driven by their drug addiction — including robbery, shoplifting and possession of controlled substances. NPR agreed to only use their first names so they could speak frankly about illegal behavior.

They are among the approximately 275 inmates and pretrial detainees getting medication-assisted treatment behind bars.

The program is central to Rhode Island Gov. Gina Raimondo’s strategy to reduce opioid overdose deaths in the state. Today, Rhode Island remains the only state to screen every individual who comes into the correctional system for opioid use disorder, and to offer, along with drug counseling, all three types of drugs approved by the Food and Drug Administration to treat addiction — methadone, buprenorphine and naltrexone.

While prisons have long offered medication-assisted treatment to small subsets of inmates, such as pregnant women, many prisons in the U.S. do not offer it at all, despite the fact that it’s considered by physicians to be the most effective treatment for opioid addiction.

The criminal justice reform bill currently before Congress would require the Federal Bureau of Prisons to assess its capacity to provide medication-assisted treatment to inmates who are dependent on opioids, and to draw up plans to expand access to medically aided treatment “where appropriate.” But the bill leaves open who would determine when and where the medication is appropriate.

“It’s just ludicrous that we have a whole population of people who are by and large incarcerated because of their disease, and we have an effective medication treatment for the disease and we don’t give it to them,” says Dr. Josiah Rich, director of the Center for Prisoner Health and Human Rights at the Miriam Hospital in Providence.

Rich was one of the experts tapped by Raimondo to identify where best to direct resources to bring down the state’s overdose deaths. He made the case for a prison program, given the high death rate among people recently incarcerated.

“This is a population of the most severely impacted, the most advanced stages of opioid use disorder — the people who have taken the greatest risks and gotten caught up in the system,” Rich says. While in prison, the inmates’ opioid use usually ends, and so does their ability to tolerate high doses of the drugs without overdosing.

“Then you get released into a very stressful situation with a lot of triggers, and you typically relapse,” Rich says. “And if you relapse back to the same level you were using, you’re set up for overdose and death.”

This is what drove the Rhode Island Department of Corrections to offer medication-assisted treatment not just to people coming into prison, but also to those who began serving their sentences before the program existed. Eight to 12 weeks before their release, inmates with histories of addiction are offered methadone, buprenorphine or naltrexone to ease their transition back to society, beginning with very low doses.

“Even if somebody has not used in many years, they may still have changes in their brain,” says Dr. Jennifer Clarke, the Department of Corrections medical programs director. “The cravings are always going to be there. So, if somebody’s going back to the same old neighborhood, chances are they’re going to be exposed to the same people as when they were using drugs.

“So, providing the medication before someone gets out really helps to prevent a relapse,” Clarke says.

The possibility of relapse is top of mind for the men in group therapy. They have friends who have overdosed and died after serving time.

Kevin has just a few weeks left in his sentence, one of many that he’s served in his adult life. “It feels good, but I’m nervous. I always get nervous,” he says. “As soon as I walk out the gates — my feet, when they hit the pavement outside of here, I have to get busy immediately.”

“You worry about the drug aspect once you hit the street,” says Josh who has also served multiple sentences for drug-related crimes. “Many times, I’ve gone out of here and overdosed repeatedly. Not on purpose, just accidentally, trying to hide from the pain, hide from myself.”

This time, Josh says, the treatment program has given him a way to focus on a different way out.

“I still have to fight the other drugs,” he says. “But at least I have something to help with one of the ones that’s brought me closer to death than anything else.”

The program inside the prison is run by CODAC, a behavioral healthcare organization that also runs substance abuse treatment programs outside the prison, with locations across Rhode Island. Prisoners who enter the program remain clients when they exit prison, with treatment outside typically paid for by Medicaid. Discharge planners from CODAC help the inmates get organized for that transition.

“I already have counseling appointments lined up, doctors appointments lined up,” says Ray, who is scheduled to be released in December. In prison, he’s been taking buprenorphine, which he’ll continue the day he gets out. “I really don’t want to use heroin again.”

Early reports from the program are promising. In a study published in JAMA Psychiatry last spring, researchers found that overdose deaths among people who had recently been imprisoned dropped sharply in the first six months of 2017 as compared to the same period the year before — nine deaths, compared to 26.

Researchers continue to track outcomes and are interviewing inmates and correctional staff to learn more about how well the program is functioning.

There have been hurdles to overcome, says Lauranne Howard, substance abuse coordinator for the Department of Corrections, starting with resistance from security staff about the use of buprenorphine in the program. Buprenorphine itself is an opioid, though less potent than street drugs in many of its effects, and sometimes ends up sold or given to people outside its intended use.

“The reaction was, why are you going to bring in a medication that we’re working real hard to keep out? And that’s a legitimate concern,” Howard says.

In response, the program has made some changes. CODAC’s Leslie Barber, who directs the prison program and runs the group therapy sessions, says they launched the program using buprenorphine pills, which take awhile to dissolve.

“We compromised by switching to the films which, although more expensive, dissolve quicker,” she says. CODAC says the buprenorphine pills cost approximately $4 each, while the films cost approximately $8 each.

A number of other states have taken notice and sent corrections officials to Rhode Island to learn from their experiences. Clarke points out that Rhode Island has the advantage of being a small state with a combined jail and prison system, so that everyone who is incarcerated comes to the same campus.

“Places like Rikers Island [in New York City] have all three types of medication for opiate use disorder, but they can’t start people who might have a prison sentence, because they’re going to be sent to a different facility, and they don’t have the same opportunities to continue treatment that we have,” Clarke says.

Patricia Coyne-Fague, acting director of corrections for Rhode Island, recognizes that even with this program, people will stumble and make mistakes — even end up reincarcerated. Still, she defends the $2 million annual expenditure with the argument that the program saves lives.

“Sometimes there can be a negative attitude about whose lives we are saving,” she says. “But everybody belongs to somebody. And so, while they may have committed a crime and deserve to be incarcerated, they’re still human beings. And if we can keep people from dying, that’s a good thing.”

Let’s block ads! (Why?)