6:14

Remember so-called death panels?

When Congress debated the Affordable Care Act in 2009, the legislation included a provision that would have allowed Medicare to reimburse doctors when they meet with patients to talk about end-of-life care.

But then Sarah Palin loudly argued that such payments would lead to care being withheld from the elderly and disabled.

Her assertions greatly distressed Dr. Pamelyn Close, a palliative care specialist in Los Angeles.

“It did terrible damage to the concept of having this conversation,” she says.

Amid the ensuing political uproar, Congress deleted the provision. And that, says Close, further discouraged doctors from initiating these talks.

“We just are not having these conversations often enough and soon enough,” Close says. “Loved ones who are trying to always do the right thing end up being weighed with tremendous guilt and tremendous uncertainty without having had that conversation.”

When done right, Close says, these nondirective counseling sessions often delve into end-of-life treatment options and legal documents, such as advance directives and living wills. The issues to be covered are complex and typically require a series of discussions.

Right now, Medicare pays for this sort of advanced care planning only if it happens during the first visit for new Medicare enrollees. But now the government is proposing that Medicare reimburse doctors for including these conversations in their practice, whenever they occur.

Already, some private insurance companies are starting to do just that.

Meanwhile, the Alliance Defending Freedom, a conservative Christian organization, has formally opposed Medicare’s proposal.

“By paying doctors for these conversations, what we’re doing is opening the door to directive counseling and coercion,” says Catherine Glenn Foster, an attorney with the group. Foster says her organization supports end-of-life counseling and planning, but not in a doctor’s office.

“A doctor is not really the person you’d want to be having it with — particularly not a general practitioner who would not be able to advise on the nuances of end-of-life care in the first place,” she says.

But patients do seem to want these talks. A 2012 study by the California HealthCare Foundation found that 80 percent of Californians want to have an end-of-life conversation with their physician, but fewer than one in 10 has done so.

Many doctors who do initiate the discussions often do so on their own dime. More often, they don’t have them at all, says Dr. Daniel Stone, an internist with Cedars-Sinai Medical Center in Los Angeles.

“When a doctor has patients scheduled every 15 minutes, it’s difficult to have a face-to-face conversation about values and goals related to the end of life, which is one of the most sensitive topics that you can possibly discuss with a patient,” Stone says.

Dr. Susan Tolle, an internist with the Center for Ethics in Health Care, at the Oregon Health and Science University, says the informality with which such conversations are held now means that family members may not be included. She’s all for the proposed change.

“What it does is it gives this really important conversation dignity and standing,” she says.

In Oregon, doctors have been squeezing end-of-life discussions into regular medical appointments for decades, under less-than-ideal circumstances. Over the past five years a quarter of a million Oregonians registered their wishes with a state registry. They use what’s known as a POLST form, which stands for Physician Orders for Life Sustaining Treatment. A version been adopted by some other states, including New York and West Virginia.

Jo Ann Farwell, a retired Portland social worker, has completed one such form in Oregon.

“I had surgery and had a prognosis of four to six months to live,” she says, after she was diagnosed with a brain tumor.

Farwell talked to her doctor, and then filled out a POLST form to make sure her last hours are as comfortable as possible.

“I wouldn’t want to be on tube-feeding,” she says. “I wouldn’t want to be resuscitated, or have mechanical ventilation, because that would probably prolong my dying, rather than giving me quality of life.”

In the 1990s, health care workers all over Oregon recognized that the wishes of patients weren’t being consistently followed. So the health care establishment worked with the state and with ethicists to prioritize end-of-life talks; the result was the POLST form.

Congressman Earl Blumenauer, a Democrat from Portland, has introduced the Medicare reimbursement legislation every session since 2009. Until now, he says, the federal government hasn’t placed any value on helping people prepare for death, and he finds that ironic.

“The Medicare program will pay for literally thousands of medical procedures, many of them very expensive and complex, even if the person is at the latest stage of life and it may not do any good,” he says.

From a purely financial point of view, the change could save money. But Blumenauer says that’s not what’s driving him.

“I don’t care what people decide,” he says. “If they want to die in an ICU with tubes up their nose, that’s their choice. What we want is that people know what their choices are.”

Farwell well remembers when her sister was dying from cancer.

“She never talked about death or dying,” she says, “never talked about what she wanted at the end. It was very, very difficult for me to try to plan and give her care.”

Farwell wants her sons to be in a better position when it comes to carrying out her wishes.

The federal government is now accepting public comment on the Medicare reimbursement proposal. It’s expected to make a decision in November.

This story is part of NPR’s reporting partnership with KPCC, Oregon Public Broadcasting and Kaiser Health News.

4:20

The latest numbers show that deaths from heroin-related overdose more than tripled nationally between 2002 and 2013. Opiate addiction touches every demographic: white, black, Hispanic, rural, suburban and urban.

Proposed solutions nationally include more government funding for treatment, tougher penalties for dealers, and proactive interventions to stop people before they start.

Now, a couple of parents who lost their son to a heroin overdose are pointing out that drug addiction doesn’t tend to be treated like a disease in the United States — which means that when drug users want to get treatment, health insurance coverage often comes up short.

And until the prevailing thinking changes, these parents say, progress will only be made on the edges.

‘Your Insurance Will Not Cover Any More’

Growing up in the Philadelphia suburb of Warrington, Anthony Fiore checked all the boxes for a typical American guy. He’d go to the gym, play video games and watch football — in his case, the Eagles. His mom, Valerie Fiore, was proud of him.

“Anthony was very intelligent,” she says. “He breezed through his high school, Central Bucks South — he never studied. He aced his SATs. He got right into Penn State’s main campus.”

But before he could get to Penn State, the powerful painkiller Oxycontin got hold of him. Soon afterward, he moved on to heroin.

In May 2011, Anthony tried a 21-day rehabilitation stint in Florida. About a year later, he checked in to another facility, but only for 11 days. By the third attempt at inpatient rehab, Anthony said he really wanted to get help and would stick it out.

“That was a 21-day treatment. And that’s when I had Premera Blue Cross,” Fiore says. She begged the staff at the rehab-center to keep treating her son at their facility for longer than 21 days. “And that gentleman said to me, ‘Your insurance will not cover any more.’ “

The family couldn’t afford to foot the bill for a longer stay, Valerie Fiore says. So Anthony left that facility in November 2013. Six months later, he was dead of a heroin overdose.

In a written response to the case, Premera Blue Cross said that its medical policies are informed by national experts.

Every case is different, but for most severe addiction problems, many treatment professionals recommend a sober inpatient stay of three to six weeks, plus intensive outpatient treatment that can include drugs like suboxone or methadone to ease the effects of cravings.

Clare Krusing with the trade group America’s Health Insurance Plans says that when making a decision about whether or not to pay for a particular treatment, insurance plans are looking at effectiveness.

“It’s taking into account the patient’s health and how they respond to those treatments,” she says. “There are many cases where, if patients need additional care and support, that is provided to them.”

Valerie Fiore is skeptical; she says Anthony met the criteria for a longer stay.

Do Insurers Treat Addiction Like Other Illnesses, As Required?

Deb Beck, who represents the Drug and Alcohol Service Providers Organization of Pennsylvania, says she hears stories like Anthony’s all the time. Facilities battle insurers to cover longer stays for patients, she says.

“The whole thing about who is worthy to have insurance coverage gets tangled into this,” Beck says. “But if I had a heart problem, and I didn’t do everything I was supposed to, I would not be denied coverage. In fact, if I got sicker, you would increase the coverage for me.”

Under a 2008 federal law, insurers have to consider drug and alcohol addiction the same as any other medical problem, as far as access to treatment goes. The Department of Labor says it has investigated at least 140 claims in which a patient’s parity rights were violated. All those claims have been resolved through discussions with the insurers, the agency says.

But advocates say the information isn’t public, and no fines have been issued.

Krusing, with the insurance industry’s trade group, says when treatment for addiction is so different from treatments for medical issues, it’s hard to figure out exactly what parity looks like.

“When you’re comparing those treatment plans, it’s essentially comparing apples and oranges,” she says. “And that’s an inherent challenge for health plans, and for patients and for their providers.”

But Sam Ball, the CEO of CASAColumbia, a substance abuse and addiction research organization, says insurance companies should recognize a longer inpatient stay that allows people to break away from bad influences.

“[It] … gives more time for planning about where they should be living after they get out of treatment,” he says. “It also gives more time to be doing more extensive training on coping skills that they’ll need once they leave the hospital or the program.”

Meanwhile, Valerie Fiore is trying to cope with her son’s death from overdose. She says she cries herself to sleep every night. Sometimes she sleeps in his bed. “I don’t know,” she says. “It maybe just makes me feel closer to him.”

She says she’s pushing for a change to the Affordable Care Act that would require insurance firms to offer at least 90 days of inpatient treatment in similar cases of drug addiction.

So far, Fiore has collected more than 30,000 signatures online. Many of the petitioners say they’re endorsing the change on behalf of a relative, or a friend or themselves.

6:57

When hurricane Katrina hit New Orleans in 2005 most residents evacuated safely. But thousands lost homes, careers, and the lives they had known. Since then, many seem to have recovered emotionally from the trauma. But some have not.

A recent poll from NPR and the Kaiser Family Foundation finds that today some people who survived Katrina say they still have difficulty sleeping and controlling emotion. Others have suffered strains on their marriage or had trouble with drugs or alcohol. Many trace the lingering difficulties to their experiences during Katrina.

Ermence Parent, for example, is a self-assured outgoing New Orleans attorney, and mother of two grown daughters. But today, 10 years after the storm, she’s still grieving.

“I still have depression — major,” she says.

When Katrina came crashing into the city 10 years ago, Parent was frantic over the whereabouts of her 87-year-old mother. The nursing home where her mother lived had told her before the storm that they had an evacuation plan. But then communication went down.

“I found out on CNN that my mother’s nursing home had not evacuated,” Parent remembers. “Several did not. And at one all the residents drowned — and we didn’t know which one.”

She called officials from the city, state and nursing home to see if her mother had survived. There was no word. Days passed. Finally, she turned to the Red Cross, who told her, “they had some lady who fit my mother’s description — they didn’t know her name.”

The nursing home patients had been quickly transported with no identification documents, Parent learned.

“So they faxed me a photograph,” she says. “And it wasn’t my mother.”

Later that day, Parent learned that the nursing home hadn’t evacuated its residents after all, and 22 patients died. Her mother survived the immediate flooding; she’d been moved to the second floor to escape the water.

“They had been there all that week with no water,” Parent says. “No air conditioning, no electricity, no food, no medicine — the whole week.”

Eventually her mother was airlifted to a nursing home in Tennessee. When Parent and her siblings arrived at that facility, their mother’s condition shocked them. The older woman wasn’t speaking, and didn’t recognize any of them.

“She just wasn’t there anymore — mentally or emotionally,’ Parent says. “She was just so frail.”

Parent’s mother never recovered, and died within months. When Parent returned to her own home — which had been flooded with nearly 8 feet of water — it was destroyed.

Her law office downtown was also ruined. She and her husband Israel struggled to get insurance claims paid and get loans to rebuild. But they had no luck.

For her husband, Parent says, the stress was huge. Just months after her mother died, Israel Parent died of a massive heart attack. He was just 58 years old.

Ermence Parent has struggled with depression and grief ever since.

“The problem with mental health issues is they don’t go away,” she says. “You can try to bury them if you like, but they only get worse.”

New Orleans health officials worry that the 10th anniversary, with all its media attention, will provoke terrible pain with the memories. So they’ve set up a city campaign of PSAs and hotlines to help residents find counseling. And therapists and psychologists, including Kim Vangeffen, are running workshops to help residents cope.

“My friends and I have been talking,” Vangeffen says. “How much do we really want to pay attention to the anniversary — watch the news shows or not? Do we want to do something totally unrelated to the hurricane?”

She sees in her patients, her friends and herself a desire to escape every aspect of the commemoration.

“Particularly when so many things can bring back feelings of panic and grief,” she says. Images, sounds — even smells.

“There’s a smell we call the ‘Katrina smell,’ that was related to mold and mildew that grew on things,” Vangeffen says. “I still have things in my garage that I have never fully gone through. And if I open those boxes you can still smell those smells — and it just brings you back to those times.”

Still, overall, according to federal statistics, mental health problems aren’t greater in New Orleans today than elsewhere in the country.

And the NPR-Kaiser poll of New Orleans residents includes some positive findings. Seventy-two percent of African American adults surveyed, and 79 percent of white adults, say they’re better able to cope with stress today because of their experiences with Katrina.

Briceshanay Gresham, a New Orleans elementary school teacher, considers herself someone who emerged from the storm even stronger.

Ten years ago, Gresham was a freshman at the University of New Orleans. With the city’s history of surviving hurricanes, she wasn’t worried about Katrina — until school officials forced Gresham and her fellow students to evacuate.

Gresham recalls walking with her roommate down the street as the water started rushing — first around her ankles, then her knees, then her waist.

“I had the shirt on my back and the shoes, pants on my body,” Gresham remembers. “That’s all I had.”

With help from her roommate’s father, Gresham enrolled at a college in the state of Washington that offered scholarships to students evacuated from New Orleans.

Once there, she focused on the arts, and wrote a one-woman play. Writing and performing it helped her work through what had happened, Gresham says.

In her play, every character had a different pair of shoes. Gresham would switch from character to character by stepping into the different shoes.

And when it came to the question of returning to New Orleans, every character had their say.

“I had lined all the shoes up,” Gresham says, “and the audience really didn’t know if each character was going to come back. And then, I finally said, ‘I am all these people — these are me, and these are my feelings. And I decided to come back because this is my city.’ “

Gresham says she returned to New Orleans because she wanted “to be the person that’s going to help rebuild, using the arts.”

Alongside her work as a teacher today, Gresham is also studying — music therapy.

“I want to help kids to be able to do the same thing Katrina helped me to do,” she says. “To use the arts to move through terrible and difficult times — use the arts to heal.”

Recent research suggests that trauma can build strength. When Katrina hit, psychologist Jean Rhodes, at the University of Massachusetts and Harvard sociologist Mary Waters happened to be in the middle of a national study looking at social support and mental health issues among low-income single mothers.

The researchers were able to track down 334 of the study participants who had been living in New Orleans at the study’s start. They found that 10 years after the storm, more than 60 percent of the women in the study had bounced back emotionally to where they were before Katrina. And more than half of these survivors of the storm had gone on to experience significant emotional growth — making positive life changes.

Before Katrina, “many of them had never expected to leave New Orleans or the relationships they were in,” Rhodes says. But many did end up making those big changes after the storm — “because they lived through it,” she says.

“And because they were able to be strong for themselves, their mothers, their children — they have a greater sense of their own strength, heightened spirituality and a stronger sense of new possibilities,” says Rhodes. “An appreciation for life.”

In fact, Rhodes says, many of the women who faced the greatest amount of difficulty seemed to go on to develop the greatest amount of strength.

5:45

Eleven years ago, NPR’s Melissa Block followed a group of first-year medical students in one gross anatomy lab as they confronted cadavers and mortality. She checks back in with one of those students.

Transcript

MELISSA BLOCK, HOST:

This is my last week hosting this program. I’m going to take some time off and come back as a roving correspondent doing long-form reporting and profiles of fascinating people. This week, I’m going to check in on a few of the other fascinating people I’ve interviewed over these past 12 years, some of the stories that have stuck with me the most.

(SOUNDBITE OF ARCHIVED BROADCAST)

UNIDENTIFIED MAN: You can see muscle here. See that? That’s muscle.

UNIDENTIFIED WOMAN: Oh, look at that. Look how you can see it. Oh…

BLOCK: Eleven years ago, I spent time with a class of first-year medical students at the University of Maryland in Baltimore. It was their first day in gross anatomy lab, their first day dissecting a cadaver. I wanted to hear what they were discovering about the body, about sickness and mortality. When I met with the students again at the end of the year, we talked about what they’d learned from their body donors. Here’s Ally Parnes from 2005.

(SOUNDBITE OF ARCHIVED BROADCAST)

ALLY PARNES: Our cadaver had obviously put up a strong fight to stay alive. He had melanoma that had metastasized and there were tumors all over his body. That was really difficult for us because we went through the process of his dying. What I learned is how precious life is how, much suffering people will actually put up with just to stay alive and just to stay here a little bit longer. I just remember thinking that I’ll see patients and how important it is to remember that our will to fight is really enormous and it’s a precious gift that we try to hold onto.

BLOCK: That’s Ally Parnes, then a first-year medical student, now a doctor. I’ve stayed in occasional touch with Ally over the years. She’s now a radiologist specializing in breast imaging, and she joins me now to catch us up on what and how she’s doing.

Ally, welcome back to the program.

PARNES: Thanks so much for having me, Melissa.

BLOCK: I do wonder how often you think about your experience in that gross anatomy lab, that man, the cadaver, you came to know so well.

PARNES: I do actually, from time to time, think about him. I actually think it was interesting just listening. I didn’t remember having said that, but, the fact that life is precious and people will really struggle to hold onto it as long as they can – I tell my patients, you’re stronger than you think you are, and it’s amazing what the human spirit can overcome.

BLOCK: Its interesting Ally ’cause you have also written about your experience as a breast cancer survivor yourself. You were diagnosed really early, right? You were, what, 40?

PARNES: Yes, the walking poster child for mammography, as it turns out. And a complete coincidence. People ask me, did you go into breast imaging because you were diagnosed with breast cancer? No, it was a couple months before I was going to start my breast imaging fellowship that I myself was diagnosed through a mammogram and subsequent biopsy.

BLOCK: So seeing medicine from a whole different perspective – obviously, as a patient, as well as a doctor.

PARNES: Yes. You know, I won’t say I’m happy I got cancer…

BLOCK: I wouldn’t expect you to.

PARNES: … (Laughter) But I do think it can be incredibly helpful in how I interact with patients. I saw a patient once who – you could just see it in her eyes that she felt all alone and very scared. At that moment, I did tell her that I knew what she was going through because I had been there. And I watched a transition instantly with her. And it was quite powerful to be able to help someone, kind of reach out my hand and have her kind of walk along with me through what she had to get through that day in terms of a biopsy. So there’ve been a lot of experiences that have been, I guess, richer. There’s a lot more depth to some of the experiences I’ve had.

BLOCK: How is your health, Ally?

PARNES: Oh, thank you, I am very fortunate to say my health is excellent. My oncologist says, I consider you cured. The fact that I was able to find it early was huge for me.

BLOCK: Well, I’m glad to hear you’re doing well.

PARNES: Melissa?

BLOCK: Yes?

PARNES: Can I share, like, a couple things?

BLOCK: Sure.

PARNES: I don’t think I ever told anyone this, but, from that anatomy lab, I remember we got to the part where we had to dissect the breast. And it hit me – that is just, it feels so wrong because here is this person, we’re just lopping off this part of her body that was so personal to her because it was part of her femininity, part of her intimacy, and – maybe, if she had had children – fed her babies with this one piece of her body that we were just cutting off and bringing across the room. I remember thinking about that when I had a choice of doing a lumpectomy and prophylactic mastectomies. I ended up deciding to do bilateral prophylactic mastectomies. And I actually think it was helpful for me to have had that experience because I was able to truly understand what I was getting myself into.

BLOCK: Wow. I’m sure it didn’t make it any easier.

PARNES: No. It’s not the right choice for everyone by any stretch, but it was the right decision for me for sure.

BLOCK: Ally, thanks again so much. I really appreciate you talking to us.

PARNES: Thanks so much, Melissa. It was great to talk to you.

BLOCK: Dr. Ally Parnes was a medical student when I first interviewed her 11 years ago. Now she’s a radiologist.

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9:39

On a hot, sunny Monday in mid-July, Dr. Leana Wen stood on a sidewalk in West Baltimore flanked by city leaders: Mayor Stephanie Rawlings-Blake, interim police commissioner Kevin Davis, Rep. Elijah Cummings. Under a huge billboard with the web address dontdie.org, she proudly unveiled a 10-point plan for tackling the city’s heroin epidemic.

Wen, the city’s health commissioner, said she aims to create a 24/7 treatment center, an emergency room of sorts for substance abuse and mental health. She spoke of targeting those most in need, starting with those in jail.

What Wen did not know was that, across town in East Baltimore, police had hours earlier arrested two workers with Safe Streets, the health department’s flagship anti-violence initiative.

The project, first launched by the health department in 2007, hires ex-offenders to go into the streets and mediate conflict before it erupts into violence. They’re called violence interrupters. It’s based on the Cure Violence model out of Chicago.

The workers have credibility in their communities because they are from those communities. Some have histories in the drug trade, and many of them have served time in prison.

What had happened was that in the wee hours of the morning, police responded to a call about an armed robbery. They chased the suspects to an address which turned out to be a Safe Streets neighborhood office. Inside, police found guns, drugs, and paraphernalia related to the manufacture and sale of drugs, including sifters, cutting agents and scales. Nine people were arrested, including Two Safe Streets employees who face gun and drug charges.

It wasn’t the first time Safe Streets workers had gotten into trouble. And Wen says she knows there are risks in hiring ex-offenders.

“But everything has risks,” she says “In my work as an ER doctor, there’s no procedure that I can recommend, no medication I can recommend that doesn’t come with a risk.”

Research shows Safe Streets does deliver. Last year, the health department says the program mediated 880 conflicts in Baltimore. Until recently, a couple of the neighborhoods they operate in had gone a year without a fatal shooting.

At the time of the arrests, Wen and the health department were preparing to announce the opening of a fifth neighborhood site for Safe Streets. There was talk of it opening in Sandtown-Winchester, Freddie Gray’s neighborhood.

Instead, Wen appeared at a press conference at police headquarters, this time flanked by the police commissioner and federal agents. She reported that the raided Safe Streets site had been suspended and that two employees had been fired. She strongly defended Safe Streets as a program, and spoke of standing united with the police and partners in reducing violence in Baltimore.

Her words had been chosen carefully. But there were problems.

She soon learned from her deputy Olivia Farrow that the Safe Streets staff was not happy.

Part of the problem was the image.

“People were upset to see me standing with the police in the first place,” Wen told us. “Because the entire point of Safe Streets is that they’re separate from the police, and in the mediation for conflicts, there has to be total trust. And we had potentially interfered with that relationship.”

So she sets about trying to fix things. She calls a meeting with the Safe Streets site directors. She brings in Brent Decker from Chicago’s Cure Violence, who trained many of the Baltimore staff, as well as violence expert Daniel Webster from Johns Hopkins University.

They talk about what could be done differently to keep staff from falling back into their old patterns and getting involved with drugs and crime. They discuss providing more counseling for the staff, who themselves have been perpetrators and victims of violence.

Wen then turns the conversation to a topic she’d heard about in one of her early visits to the program.

“Initially when I was meeting with Safe Streets, I said, ‘What is the one type of support we can help you with?’ And I thought they were going to say trauma debriefing, mental health support. And they said child support.”

That puzzles her. She wonders why she would be helping with child support in the first place, and also just how that would be done.

Dante Barksdale, Safe Streets’ outreach coordinator, explains that most of the guys coming to work for the program are over 30, which means they’re likely to have children. Many owe upwards of $50,000 in child support. The Safe Streets jobs pay about $28,000 a year.

A couple months after they start working, the state starts deducting child support from their paychecks, leaving them with very little. Most of these men have never held jobs before and don’t have the skills to find other work. All of these factors make for a very stressful transition to legal employment.

“We see that a lot,” Barksdale says. “That translates through all the sites.”

Dedra Layne, who oversees Safe Streets at the Health Department, proposes talking with the bureau of child support enforcement.

“If they don’t know that we’re faced with this issue, they can’t do anything,” Layne says. “We should at least be having the conversation about are there any options to consider. Are there any things that we can put in place that would support the staff as they move through their first employment opportunities and still have families to manage.”

What started as a conversation about preventing violence has now wandered into the realm of child support law, further and further away from what many might think of as public health. But Dr. Wen pushes on.

“Have there been, around the country, efforts to do different types of salary arrangements to bypass the child support problem?” she asks. “An example might be instead of paying child support directly, have there been experiments to see what happens if we pay for housing?”

Heads nod around the table. They don’t know if it will work, but the sense is it’s worth looking into.

No one here would argue that child support isn’t important. In a different story, we might be using the term “deadbeat dads” to describe this problem. But what do you do when your deadbeat dad is someone who voluntarily puts himself in dangerous situations for the good of the community, wedging himself between people who literally want to kill each other? What do you do when your deadbeat dad represents your hope for the city, if only he can stay on track?

These are the questions that Leana Wen is wrestling with. And like so many other questions in Baltimore — there are no easy answers.

NPR and All Things Considered will continue reporting from Baltimore in the coming months, checking in with Leana Wen and her team periodically. Stay tuned for future stories.

3:53

Brenda Hummel’s 7-year-old daughter Andrea was born with severe epilepsy. Like many children with significant diseases or disabilities, she has health insurance through Medicaid. Hummel navigated Iowa’s Medicaid resources for years to find just the right doctors and care for her daughter. But now Iowa’s governor, Republican Terry Branstad, is moving full speed ahead with a plan to put private companies in charge of managing Medicaid’s services, and that has Hummel worried.

Everywhere in the Hummel household, there are signs of just how much care Andrea needs. Her bedroom, for instance, looks like a typical kid’s room — stuffed animals, a frog light that shines images on the ceiling, and a butterfly mobile. But the bed stands out – the head of the bed goes up and down so Andrea can have her head elevated when she sleeps.

“When she was throwing up all the time when she was in a regular bed, I hardly got any sleep,” Hummel explains, “because if I heard her coughing, I knew she was choking.”

Andrea has this bed thanks to Medicaid — as well as her wheelchair and nurses, like Nate Lair who’s been with the family for years. When Hummel gets home from work, Lair says, Andrea’s personality changes.

“That’s when she turns on the diva attitude,” he says, laughing.

That diva attitude is significant progress. For years, Hummel says, her daughter showed very little personality. Seizures interrupted her development.

Now Andrea is able to go to school and do normal activities. But her mom worries that having a private business in charge of Medicaid will jeopardize the level of care Andrea gets.

“She hasn’t been in the hospital for 2 1/2 years, I think,” says Hummel. “So when they look at that, they may think, ‘[Her services] are not medically necessary. She’s doing great and doesn’t need these services that are costing money.’ But, in my eyes, she can fall back to having seizures any time. We’re not out of the woods at all.”

Maybe it’ll be OK, Hummel says, but she just doesn’t know enough.

Medicaid serves a large population in Iowa. The state expanded Medicaid under the Affordable Care Act, and is now open to not only its traditional population — the poor and disabled — but also to adults who earn as much as about $16,000 a year for a single person, and as much as $32,000 for a family of four.

Amy McCoy, who is with Iowa’s Department of Health, says patients will continue to receive the same care under the new system, and the changes will save money and streamline the services.

“Some people might have five doctors,” McCoy says. “Through this care-coordination effort, they can make sure everybody’s on the same page with their treatment.”

McCoy says having private insurers manage Medicaid is nothing new.

“Thirty-nine states are using some kind of managed care,” she says. “So other people have done this. We have models to look after, and we have companies who have experience.”

But a lot of states, including Kansas and Kentucky, have not done so well, says Pam Jochum, president of the Iowa Senate and a Democrat.

“You know, when I was a kid growing up my mother would say, ‘If everybody jumps off the bridge, are you going to, too?’ ” Jochum says. “Of course not! The point is that just because everyone else is doing it doesn’t make it better.”

Families like Brenda Hummel’s have a natural ally in Jochum; she, too, has a daughter with special needs who has been on Medicaid all of her life. Still, even with Jochum’s opposition to the changes in Medicaid, the process in Iowa is moving forward. Gov. Branstad did not need legislative approval when he announced the switch to managed care in January.

In response, some lawmakers, including Jochum, insisted on a committee to oversee the transition and to make sure that consumers are treated fairly.

“There is no way,” Jochum says, “you can put that many people into a system all at once, with various degrees of disabilities and need, and think anyone can manage that and manage it well.”

Eleven companies have submitted bids to manage most of the $4 billion program, and Iowa plans to announce later this month which insurers will win the bid.

Brad Wright studies health policy at the University of Iowa. He says a lot of states have experimented with this idea, but on a smaller scale.

“They’ve not … done what Iowa is proposing to do — or at least most have not done this — which is to put everyone into it,” Wright says.

The only hurdle that stands in the way of approval, he says, is an OK from the federal government.

“If that happens,” Wright says, “starting in January, it’s full steam ahead.”

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