First, Alzheimer’s takes a person’s memory. Then it takes their family’s money.

That’s the central finding of a report published Wednesday by the Alzheimer’s Association on the financial burden friends and families bear when they care for someone with dementia.

“What we found was really startling,” says Beth Kallmyer, vice president of constituent services for the organization. “The cost of paying for care was putting people in a situation where they had to make really difficult choices around basic necessities — things like food, medical care, transportation.”

The report, based on a survey of more than 3,500 Americans contributing to the care of someone with dementia, also found that:

• Friends and family spent, on average, more than $5,000 a year of their own money on the expenses of their loved one with dementia, ranging from food to adult diapers.
• More than one-third of these contributors to care who had jobs had to reduce their hours or quit.
• To make ends meet, about 13 percent had to raise money by selling personal belongings, such as a car.
• Nearly half of the care contributors surveyed had to dip into their savings or retirement funds.

The Alzheimer’s Association decided to conduct the survey, Kallmyer says, after hearing lots of stories of financial hardship from friends and family members of people with Alzheimer’s. One of those stories came from Paul and Sarah Hornback, who live in central Kentucky.

Paul Hornback was a senior engineer and analyst for the U.S. Army when was diagnosed with Alzheimer’s six years ago. He was just 55.

“I was kind of at the height of my career and then this dreadful diagnosis came and it just wiped out every plan I had for my career,” he says.

Hornback and his wife, Sarah, had to re-imagine their future. Then they began to consider the financial implications.

The Hornbacks had borrowed a lot of money to put three children through college. Now Paul was being forced to retire early and they wouldn’t have his salary to pay off the debt.

“We had to sell basically everything but my wife’s car and an old truck that I kept to drive around here on the farm,” he says.

At first, Sarah Hornback kept working as a school administrator. But about 18 months ago, she also had to retire early — to care for her husband.

“It got to the point where it just wasn’t safe for him to stay alone just because of memory and decision making,” she says. “He might leave the stove on or he might decide that there was a tree branch bothering him and he should get out the chain saw.”

The Hornbacks are getting by on their early retirement income. But Sarah Hornback says the real financial problems will start when she can no longer care for her husband on her own.

“When he has to go into full-time care, I’m going to be at the poverty level, basically,” she says.

The financial burden is greatest for people like the Hornbacks, who have to pay more while working less, Kallmyer says.

“It’s really a double whammy,” she says. “People are sometimes not able to work as much or not able to work at all in order to provide care, and then they’re paying money out of pocket on top of that.”

The survey also found that about two-thirds of Americans believe Medicare will help cover nursing home costs, or aren’t sure whether it will. It won’t.

“What that tells us is that families are ultimately unprepared for that really, really significant cost of long-term care,” Kallmyer says.

Clinics that specialize in Alzheimer’s often try to help family members navigate the financial aspects of care.

“It’s a challenge for almost every family that we see,” says Dr. Pierre Tariot, a geriatric psychiatrist and director of the Banner Alzheimer’s Institute in Phoenix. “We do see folks who are lucky and have considerable resources. But even for those families it’s a major financial obligation.”

And it’s not realistic to expect every family to absorb the cost, Tariot says.

“Ultimately,” he says, “society will need to think of other ways of funding care for our elders as they become vulnerable.”

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Carolyn Rossi has been a registered nurse for 27 years, and she’s been fiercely protective of infants in her intensive care unit — babies born too soon, babies born with physical and cognitive abnormalities and, increasingly, babies born dependent on opioids.

As clinical manager of the nurseries at the Hospital of Central Connecticut, Rossi works in the neonatal intensive care unit. Like many hospitals across the country, the facility near Hartford has seen a dramatic rise in recent years in the number of babies born with neonatal abstinence syndrome. The National Institute of Drug Abuse reports that more than 21,000 infants born in the U.S. in 2012 (the most recent year for which data are available) experienced symptoms of opioid withdrawal. The hospital says each such baby in its care costs roughly $50,000 to treat.

These fragile and fitful newborns present new challenges for hospitals. Some research suggests the children do best when they can be held for hours at a time, preferably by their mothers, in quiet, private rooms, as they go through the process of being weaned off the drugs.

But delivering care that way requires changing the attitudes of many doctors and nurses about addiction.

Rossi, for example, says her initial training in the best ways to care for newborns in withdrawal was very different from what the research now suggests.

“You know, we looked at it like, ‘They are drug addicts and the baby is born a drug addict and we’re trying to protect the baby from the mother,’ ” Rossi says. “Like we were going to cure the baby, but not cure the mother and the family. So it was a lot about taking babies away from moms.”

That turns out not to be a useful strategy if you’re hoping to engage the help and support of a mother who already feels stigmatized by her drug habit, says Kate Sims, who directs women’s and children’s services at the hospital.

“She’s feeling guilt herself,” Sims says. “And then [she] comes in here and, unfortunately, as best as we are as providers and nurses, we’re also judgmental. And so it’s felt.”

A lack of trust between mother and a nurse makes treating the baby even harder, Sims says.

So the hospital is now trying to make sure everyone in patient care sees the addicted mother first as a mom. In some cases that means getting care providers to understand that addiction isn’t a moral failure, and that many people who are addicted come from a lifetime of trauma. Rossi says it’s been hard for nurses who have been trained to be baby specialists to become mom specialists, too.

“It’s a big culture change for me personally, and I know for the NICU nurses that are in here,” she says. “You really do believe you’re doing the right thing until something like this comes along.”

The hospital’s approach to caring for these infants is changing, in other ways, too. Dr. Annmarie Golioto, chief of pediatrics and the head of the hospital’s nursery, says a bright, loud and bustling intensive care unit is a hard environment for a baby going through withdrawal. So she’s gotten approval to use a few rooms just outside the intensive care unit as a quiet, monitored space for a baby and mother to stay for as long as the baby needs it.

“We’ve had to figure out: ‘How can we use our rooms differently?’ ” says Golioto. “How can we use our space differently? And how we can partner with mom differently to have that relationship with her, to say, ‘We expect you to stay here with your baby and take care of the baby after you’ve been discharged.’ “

Golioto hopes the new setting will shorten recovery times for the children and decrease the amount of morphine a baby needs to ease withdrawal. She’s also hopeful these moves will inspire some mothers to think differently about their newborns.

“The thinking was, ‘My baby is being taken care of. There are nurses there. There are doctors there. I don’t need to be here. They’re getting everything they need,’ ” says Golioto. “We’re trying to change the thinking — ‘no, they’re not getting everything they need if you’re not here. Because they need you.’ “

Rossi says she recognized the value in this new nursing approach the very first time she saw it in action. It was last December, she recalls. Rossi gave a mother a hospital room to stay in for more than a month while her baby went through withdrawal.

“She was just thrilled,” Rossi says. Though the mother couldn’t be at the hospital 24/7, “she was here as much as she could be,” the nurse says, “and just knowing that she had the flexibility helped me understand that she is a mom. She is a great mom. She wants to be a better mom.”

Nearly every aspect of the opioid epidemic worsened in 2014, according to the federal government’s latest figures. And even though the Hospital of Central Connecticut’s programs are just a few months old, health care workers there hope the changes they’ve made in their culture of care will, at the very least, give vulnerable moms and babies a better start.

This story is second in our four-part series Treating the Tiniest Opioid Patients, a collaboration produced by NPR’s National & Science Desks, local member stations and Kaiser Health News.

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This story is first in our four-part series Treating the Tiniest Opioid Patients, a collaboration produced by NPR’s National & Science Desks, local member stations and Kaiser Health News.

Swaddled in soft hospital blankets, Lexi is 2 weeks old and weighs 6 pounds. She’s been at Women and Infants Hospital in Providence, R.I., since she was born, and is experiencing symptoms of opioid withdrawal. Her mother took methadone to wean herself from heroin when she got pregnant, just as doctors advised. But now the hospital team has to wean newborn Lexi from the methadone.

As rates of opioid addiction have continued to climb in the U.S., the number of babies born with neonatal abstinence syndrome has gone up, too — by five-fold from 2000 to 2012, according to the National Institute of Drug Abuse.

It can be a painful way to enter the world, abruptly cut off from the powerful drug in the mother’s system. The baby is usually born with some level of circulating opioids. As drug levels decline in the first 72 hours, various withdrawal symptoms may appear — such as trembling, vomiting, diarrhea or seizures.

At some point, if symptoms mount in number or severity, doctors will begin giving medication to help ease them. The idea is to give the baby just enough opioid to reduce those symptoms, and then slowly, over days or weeks, decrease that dose to zero.

A doctor comes to check on Lexi and her mother, Carrie. To protect her family’s privacy, Carrie asked us not to use the family name.

“So, hi, Peanut!” the doctor says to the baby. “Any concerns?” she asks Carrie.

“Coming down has been catching up with her,” says Carrie.

“Do you feel like she’s jittery?” the doctor asks.

“She didn’t want to be put down last night — like [she had] the shakes,” Carrie says.

Lexi has neonatal abstinence syndrome, and has been getting methadone treatments for it. She is getting better — most babies do — but even with treatment, she’s had tremors, diarrhea, and she’s cried and cried. Her little arms and legs tighten up, her fingers and toes clenched. She’s been feverish, her mother says.

“I know what she’s feeling,” Carrie says. “And that is the worst part.”

Carrie was addicted to heroin herself and knows withdrawal is miserable. She’s been off heroin — with help from methadone — since she found out she was pregnant, she says. The small dose of methadone keeps a low level of opioid in her system so she doesn’t go into withdrawal, but it doesn’t get her high. For Carrie and thousands like her, methadone is a lifesaver — helping them quit a heroin or oxycodone or other opioid habit for good.

But getting pregnant posed a dilemma: If Carrie stopped taking opioids altogether, she risked relapse or miscarriage. Yet, if she continued to take any opioid — including methadone — there would be a 60 to 80 percent chance that her baby would be born with neonatal abstinence syndrome, the doctors told her.

“It’s hard to watch, as her mother,” Carrie says, “because you’re helpless and there’s really nothing you can do. You are a lot of the reason why she’s going through what she’s going through.”

Babies going through withdrawal spend weeks — even months — in hospital nurseries like this one.

“Their cry is very different,” says Cindy Robin, a registered nurse at the Providence hospital, who has been caring for mothers and newborns for more than 30 years. “It’s a more distressed cry,” she says, “and it really pulls at your heartstrings to have to listen to them.”

Robin says babies with mild symptoms of the withdrawal syndrome will sneeze and sniffle. They have trouble settling down. Babies who have a more severe case can have seizures and dangerously high fevers. Robin says nurses have to dim the lights, and swaddle the newborns tightly to help keep them calm.

“They just need to be held in a nice, quiet spot,” she says. “We have nice quiet music playing, and try to keep them as comfortable as possible.”

Nurses with special training check on the babies every couple of hours.

“So these are the things that we look for … and what we teach the parents,” she says: “Is the baby crying excessively? Is it a high pitched cry? Is it just a continuous cry? How do they sleep after they eat?”

Medication, which is gradually decreased, can help ease this constellation of symptoms.

“The American Academy of Pediatrics and others recommend an opioid for the babies, because you’re giving them back what they’re withdrawing from,” explains Dr. Jonathan Davis, a neonatologist and chief of newborn medicine at Tufts’ Medical Center. “Morphine and methadone are the two most common.”

But Davis says no one’s really done the research to figure out which drug works better for babies, and doctors are left to figure that out by trial and error, case by case. Though the Food and Drug Administration hasn’t officially approved morphine or methadone for use in newborns, doctors prescribe these drugs to the children anyway, in smaller doses than they give adults.

“As I spoke to people around the country, everyone would have their own approach and a very different way of treating these babies,” Davis says. “And we thought that quite odd.”

So he and a colleague, Brown University developmental psychologist Barry Lester, have launched a major study to sort out what works best. The two are hoping to enroll 180 babies in their double-blind, randomized, controlled trial — no one will know which newborns are getting methadone, and which are getting morphine, for example, until the study’s end. And they’re taking the research further: No study yet has looked at the long-term effects of the drugs, so Davis and Lester will continue to follow-up with measures of cognitive and physical development until the children are 18 months old.

“It may be,” Davis says, “that one agent is safer short-term, but when we look longer-term it may actually be more dangerous.” Teasing out long-term effects of a drug isn’t easy, Lester says; many factors can influence a baby’s development.

“If you’re drug-exposed and you’re growing up in an inadequate environment — which may not be poverty, it may be inadequate parenting — that’s a double whammy,” he says. “Those are going to be your worst case scenarios.”

Despite many remaining unknowns, doctors have consistently found that treatment with morphine or methadone enables most babies to get through withdrawal in about six to eight weeks.

“It can be heartbreaking,” says Robin, who has helped shepherd many kids through dark days. “But at the end, it is also rewarding,” she says, “because you see them get better and you see them go home.”

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Eliza Catchings has been seeing doctors at the Christie Clinic in central Illinois since 1957. But just after receiving this year’s WellCare Medicare Advantage member card, the insurer told her the clinic was leaving WellCare’s provider network and she would have to choose new doctors.

“I was terrified,” said Catchings, 79, who gets care for diabetes and heart problems. But she was helped by a little-noticed change in federal policy.

Medicare Advantage plans sold by private insurers are an alternative to traditional Medicare, but they cover services only from doctors, hospitals and other providers that are in the insurer’s network. Although providers are allowed to drop out of the plans anytime, members usually can change only during the annual sign-up period in the fall. There are exceptions, but until recently losing a provider was not among them.

After insurers dropped hundreds of providers in 2013, the Centers for Medicare and Medicaid Services issued rules giving people a “special enrollment period” to change plans or join regular Medicare if there was a “significant” change in their provider network. The policy took effect in 2015 and applies only to Medicare Advantage members, not to the plans CMS oversees in the health law’s marketplaces.

Yet officials didn’t explain what they considered significant or what would trigger the option.

In the past eight months, Medicare officials have quietly granted the special enrollment periods to more than 15,000 Medicare Advantage members in seven states, the District of Columbia and Puerto Rico based on provider cuts. These decisions offer important details about how members can get permission to follow their doctors who leave their plans.

The number of beneficiaries affected has ranged from 344 members who lost access to 125 physicians and hospitals (3 percent of the network) in a New West Health Services plan in southwestern Montana to 7,830 members of MMM Healthcare and PMC Medicare Choice, which dropped 268 providers (about 5 percent) in Puerto Rico. Richard Shinto, president and CEO of InnovaCare, which runs both Puerto Rican plans, said poorly performing doctors were dropped so that the plans could improve their star ratings from CMS.

Those insurers notified CMS about the changes, as required by the government, to make sure the smaller network met minimum standards and members’ needs.

But Medicare Deputy Administrator Sean Cavanaugh said beneficiaries can also call the government’s help line (800-633-4227) to request permission to leave their plans because they lost their doctors. In rare situations, Cavanaugh said, individual beneficiaries have been allowed to switch plans.

“What we’re looking for is whether their selection of a plan was based on a network and the presence of certain physicians and that their selection would’ve been different” without those physicians, he said.

Yet Medicare doesn’t publicize the option, and few beneficiaries may know about it. Representatives who answered calls to Medicare’s toll-free number earlier in March said nothing could be done.

Catchings sought help from Jen Tayabji of the Champaign County Health Care Consumers advocacy group, who then contacted Erin Weir at Age Options, the Area Agency on Aging in suburban Chicago.

They took examples of five Wellcare members who could not find new doctors to CMS, which then granted a special enrollment period to several hundred Christie Clinic patients and told WellCare to send them letters.

Miguel Torres, WellCare’s senior director for Illinois field sales and marketing, said Christie Clinic terminated its WellCare contract in three rural counties and the company is still trying to replace the 100 doctors the insurer lost. Creating “a competitive network” is a constant focus, he said, “to ensure that our members get the care closest to their homes.”

Now Catchings can stay with her longtime doctors at the Christie Clinic. “Everything’s the same,” she said, except one thing — she has a Medicare Advantage plan from Coventry.

KHN’s coverage of aging and long-term-care issues is supported in part by a grant from The SCAN Foundation.

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The Food and Drug Administration said Tuesday that all fast-acting opioid pain medicines will be required to carry its strongest warning about risks, including the risks for abuse, addiction, overdose and death.

The decision to require instructions for the drugs to carry a so-called black box warning marks the latest in a series of steps by the FDA and other federal agencies to fight the epidemic of opioid addiction.

“This epidemic touches all corners of our nation and is devastating individual lives, communities and our nation,” said FDA Commissioner Robert Califf during a briefing for reporters. He called the epidemic the “most urgent and devastating public health crisis facing our nation.”

The warnings are aimed at more than 200 fast-acting versions of opioids, such as oxycodone, hydrocodone and morphine, which are intended for use every four to six hours for serious acute pain. Ninety percent of all opioid prescriptions are for these fast-acting, or immediate-release, formulations.

Black-box warnings are the most stringent the agency can require, and they have been found to get doctors’ attention and influence their prescribing decisions.

Califf said the FDA wants to warn doctors and patients about the dangers of the drugs while ensuring they remain available for patients who need them to alleviate pain. However, Califf stressed the drugs should be reserved for severe pain for which no alternatives are available.

In addition to the risks of addiction and overdose from opioids, the new labels will also warn that chronic use of the drugs by pregnant women could lead their newborns to suffer from neonatal opioid withdrawal syndrome.

When taken with antidepressants and migraine medications, opioids can also cause a potentially life-threatening central nervous system condition known as serotonin syndrome, which occurs when the body is overloaded with the brain chemical serotonin.

Opioids are also known to increase the risk for a “rare but serious” disorder of the adrenal glands known as adrenal insufficiency, and decrease levels of sex hormones, the FDA said.

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The battle over drug prices escalated Monday when health insurance giant Anthem Inc. sued Express Scripts, a manager of drug benefits, to get a bigger share of savings on prescription medicines.

Anthem is looking for a change in its contract with Express Scripts, which handles drug benefits for 80 million people. The insurer says it’s overpaying for pharmaceuticals and not benefiting from rebates the pharmacy benefit manager has negotiated with drugmakers.

Anthem’s CEO Joseph Swedish said in January that the company could save as much at $3 billion in drug costs by reworking the deal with the PBM, according to several news reports at the time. Anthem is now threatening to end its contract with the country’s largest pharmacy benefit manager if it doesn’t get the price breaks it wants.

Express Scripts contests Anthem’s assessment. “We do not believe they are entitled to $3 billion,” Express Scripts spokesman Brian Henry tells Shots via email.

Drug prices are among the most opaque aspects of the muddled health care industry. Almost nobody pays the retail price for prescription medications.

Here’s how it works.

Pharmacy benefit managers like Express Scripts contract with health insurers or directly with employers to administer the prescription portion of employees’ health care plans. The PBMs then negotiate prices with drug companies for medications.

When patients go to a drugstore, they usually pay a set copayment for their medicine and the PBM pays the remainder of the discounted price — which shows up on insurance records.

But those discounts are often supplemented with rebates from the pharmaceutical manufacturer to the PBM that are often invisible to patients and to insurers or employers.

Express Scripts boasts about the discounts that it has extracted from drug companies that it passes along, in part, to its clients, such as Anthem. In recent years, Express Scripts has been driving harder bargains, sometimes refusing to pay at all for popular brand-name medicines and steering patients to rival drugs from companies that offer the PBM better deals.

Prices of brand name prescription drugs have climbed 164 percent since 2008 while generic drug prices have fallen 70 percent over the same period, according to Express Scripts’ own report.

Anthem used to run its own PBM but sold it to Express Scripts in 2009. As part of the deal, Anthem agreed to use Express Scripts for 10 years. The contract, however, called for the companies to renegotiate prices last December.

In its lawsuit, filed in the U.S. District Court for the Southern District of new York, Anthem says Express Scripts has refused to negotiate in good faith. Anthem is asking for damages to compensate the insurer for overpaying for prescription drugs.

“We believe that Anthem’s lawsuit is without merit,” Express Scripts said in an emailed statement, adding that the company “has consistently acted in good faith and in accordance with the terms of its agreement with Anthem.”

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Medicare beneficiaries may get dinged with higher prescription drug bills this year because more than half of covered drugs in standalone plans require them to pay a percentage of the cost rather than a flat fee, an analysis from consulting group Avalere Health says.

Fifty-eight percent of covered drugs in Part D drug plans in 2016 are subject to this so-called coinsurance, the Avalere analysis found. That means patients are on the hook for a percentage of the costs, which can be much higher than a traditional copay, which is flat. If a drug costs $200, instead of making a $20 copayment, they may owe 20 percent of the cost, or $40.

The percentage of drugs requiring coinsurance has climbed steadily, increasing from 35 percent in 2014 to 45 percent last year. That percentage is approaching two-thirds of all covered drugs.

More coinsurance makes beneficiaries’ drug costs less predictable, said Caroline Pearson, a senior vice president at Avalere. It may also result in fewer affordable options if patients can’t achieve any savings by substituting drugs in the same therapeutic class, she said. The shift toward coinsurance also means that Medicare beneficiaries will have to rely to a greater extent on cost-estimating tools like the Medicare plan finder to figure out how much they may owe out of pocket.

Medicare Part D plans typically divide drugs into five tiers with different levels of cost sharing. In the past, coinsurance may have been limited to high-cost specialty drugs, but that’s changing. Last year, about two-thirds of people in drug plans faced coinsurance in more than one drug tier; this year the figure is 96 percent, according to Avalere.

Medicare Advantage managed care plans aren’t shifting to coinsurance to the same degree as the standalone drugs plans that accompany traditional Medicare coverage, the analysis found. In 2016, 26 percent of covered drugs in Medicare Advantage plans required coinsurance.

“On the Medicare Advantage side, the premium includes both medical and drug benefits, and the drug piece is smaller,” so the incentive to tightly manage drug costs may be lower in Medicare Advantage plans, Pearson said.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

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