NPR — together with member stations from across the country — has been reporting on troubles with the Veterans Choice program, a $10 billion plan created by Congress two years ago to squash long wait times veterans were encountering when going to see a doctor. But as we reported in March, this fix needs a fix.

Around the nation, our joint reporting project — called Back at Base — has found examples of these problems. Emily Siner of Nashville Public Radio reported on troubles with overcrowding in Tennessee. And Monday, we reported on hospitals and doctors not getting paid in Montana and veterans getting snarled in the phone systems trying to make appointments in North Carolina.

Congress and Department of Veterans Affairs officials are in the middle of overhauling the program. Here are some reasons:

• The VA’s most recent data show compared to last year, there are now 70,000 more appointments that kept a veteran waiting at least a month to get care.
• A March General Accounting Office report shows the Choice program had little impact on getting veterans to see a primary care physician in 30 days.
• Thousands of veterans referred to the program are returning to the VA for care — sometimes because the program couldn’t find a doctor for them, and for 28,287 vets, because the private doctor they were told to see was too far away, according to data NPR obtained from the VA.
• The VA’s own inspector general found that Colorado Springs, Colo., veterans were waiting longer than 30 days for care because staff at the local VA hospital was not adding them to the list of patients eligible for the Choice program.
• The VA recently set up a hotline to help veterans who have issues with their credit because the programs hadn’t paid doctors on time.
• The GAO tells NPR that the VA’s claims process is so backed up that the VA could easily spend more money this year on interest for late payments than Medicare does, even though Medicare processes hundreds of billions of dollars more in claims.
• Congress gave the VA only 90 days from the day it was signed into law to implement the Choice program. In a VA document justifying its decision not to open up the contract to bidders, the VA cited the “hyper-accelerated” pace imposed by Congress. Typically, a program of this size would take at least a year to create.

‘I’m In So Much Pain. I’m Asking For Relief.’

Amanda Wirtz, who was discharged from the Navy in 2003 after developing a rare tumor, began having headaches last November. When the VA couldn’t get her in to see a specialist, it offered to send her to a neurologist in the community, using the new Veterans Choice program. This was the type of situation Congress envisioned when it created the program in 2014: If the VA couldn’t schedule a patient within 30 days, or if the vet lived more than 40 miles from a VA clinic, the vet could see a nearby private doctor.

“This is Feb. 23, for an appointment scheduled March 23,” Wirtz said, holding up a letter she received from the company handling the Choice program. “[In] January I’m considering suicide because I’m in so much pain. I’m asking for relief and the Choice program is giving me an appointment in March.”

Her experience isn’t new to government officials, but the question is whether Congress or the VA should have anticipated there would be problems.

Two years ago, Congress was hearing about the VA concealing wait times at VA hospitals and clinics, and about the veterans who were suffering as a result.

“If you don’t think, in 2014, that was the time to stand up a program like Choice, I don’t know when you would find a time,” said Rep. Jeff Miller, R-Fla., the chairman of the House Veterans Affairs Committee. “That’s the problem. They were causing veterans to wait. And by the way, veterans did die, while they were on the waiting list.”

Congress worked at a frantic pace. The House passed a bill on June 10, 2014. The Senate passed its own version within days. By Aug. 7, President Obama had signed the Veterans Access, Choice and Accountability Act of 2014. It gave the VA $10 billion to set up a program that would give qualified veterans the option of seeing a private doctor.

There was confusion from the beginning. The law required the VA to distribute 9 million Veterans Choice Cards to vets receiving VA care as of August 2014, even though all vets who use the VA already have a VA card. Sen. John McCain, R-Ariz., explained the card at a press conference, while lawmakers crafted a final version:

“I always believed that veterans could choose and should choose and that’s why I first proposed this in 2008, when I ran for the presidency of the United States.” McCain said. “Give these veterans a Choice Card so they can take that Choice Card and present it to the health care provider.”

How To Build A $10 Billion Program In 90 Days

Impatient lawmakers gave the VA only 90 days to set up the national program. The first decision that VA officials made was that they couldn’t run the program themselves.

“Could we set up the infrastructure to build the network to credential the network in 90 days?” Baligh Yehia, assistant deputy undersecretary for community care at the VA, asked. “We couldn’t. We just didn’t have the resources, the tools available to us to do that.”

So the VA shopped around. It invited 57 companies to a VA-sponsored event in September 2014 to gauge interest in possible bids. But nearly all of them turned down the VA.

“Only four companies said they were interested in continuing some conversation,” Yehia, who wasn’t with the VA when Congress mandated the Choice program, said. “And then two of those companies made it crystal clear that given a November, or a 90-day, time frame, they’re not interested.”

That left two companies the VA had under contract to help it manage a portion of the roughly $4 billion a year the agency was already spending on outside providers. TriWest and Health Net were building a program called Patient Centered Community Care, or PC3. The network of private doctors and hospitals was meant to help the VA streamline the relationships local VA medical centers had with community providers.

The VA decided to build the Veterans Choice program by building it on top of PC3.

But PC3 was having its own problems. The VA’s inspector general found that in the summer of 2014, while Congress was debating the Choice program, VA administrators were scrambling to find appointments for hundreds of vets, after the companies couldn’t find doctors for them in their networks.

Some of the problems that would emerge later with the Choice program were apparent in PC3. For example, within three months, TriWest returned referral authorizations of 172 out of 192 gastroenterology cases, and 57 of those patients had to be seen immediately because they had symptoms of significant ailments, such as cancer.

The VA was also making the process difficult because it was taking the agency an average of 19 days to submit appointments to the contractors, according to another VA inspector general report.

Yehia stressed that PC3 was new and smaller than Choice but also acknowledged that the VA didn’t have any other alternatives.

“This car wasn’t designed to run this race,” Yehia said. “It had a very different purpose. It had a very different intention. In fact, the PC3 contract when it first rolled out didn’t even have primary care. It was only a specialty care contract. It gives you the scope that this vehicle was not meant to deliver this vast program.”

‘Many Veterans Were Confused’

Health Net did not respond to requests to be interviewed. It runs the Choice program mostly in the Eastern portion of the United States. TriWest covers 28 states in the Western half of the country. TriWest created 10 call centers, including one in San Diego that opened in September. The company has hired more than 3,000 employees.

“Oh my God, you expect us to build networks, have all these processes in place, all these contact centers to be able to do all of these things, at a very, very abbreviated schedule,” said Frank “Mac” Maguire, chief medical officer for TriWest. “I think a lot of people said, ‘You are crazy.’ Were we crazy? In hindsight, maybe yes, but we felt we were up to the challenge and we just want to be given an opportunity to show that it’s working.”

The company believes it finally has a network of doctors large enough to handle the patient load for Veterans Choice. It concedes creating a network was a struggle, in part because the VA did not always understand its needs.

Sometimes VA rules created obstacles. Until recently, the VA would not let the companies call veterans directly to schedule an appointment. The vet had to call them, which sometimes left vets waiting by the phone.

“Many veterans were confused,” Maguire said. “Maybe it was a month since they’ve seen the VA. ‘Why is my appointment not set up?’ And we’d say, ‘Unfortunately, we’ve been waiting for you to call us.’ “

TriWest believes it has a handle on the problems. In San Diego, TriWest went from a ribbon-cutting in September to more than 300 employees answering veterans’ calls.

But it may be too late. The VA is now reconsidering whether it should have outsourced so much of the program — especially customer service.

Adrian Atizado, with the Disabled Veterans of America, said putting a contractor between the VA doctor and the outside physician may always cause problems.

“The third-party administrator will sometimes say the authorization is not very clear,” he said. “Exactly what kind of eye check do you need? Or what kind of MRI do you need? There are a lot of communication problems when you start handing things off to other people.”

Congress is looking at revamping and expanding the Choice program to cover most of what the VA spends on outside care. Considering it was born out of a scandal involving VA scheduling, some in Congress are not eager to allow the VA to take on a greater role.

The GAO report released this month says the VA’s system for processing claims relies mainly on paper files — a process that adds months to the amount of time it takes to pay doctors. Whatever the outcome, the pressure is on to figure out how to get veterans the care they’ve been promised, without all of the confusion.

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The Supreme Court Monday punted on the constitutional merits of a religious freedom challenge to the Affordable Care Act. The court said it was feasible to satisfy religious groups and women seeking contraception and sent the case back to the lower courts.

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When it comes to the issue of religious rights versus no-cost contraception, the only thing the Supreme Court could agree on was not to decide.

In an unsigned opinion issued Monday, the court sent a series of cases back to a raft of federal appeals courts, with instructions for those courts and the parties in the lawsuits to try harder to work things out. “The Court expresses no view on the merits of the cases,” the opinion said.

At issue is the extent to which religiously affiliated employers (such as universities or hospitals) need to participate in the requirement under the Affordable Care Act for most employer health plans to provide no-cost contraception for women.

The government made several changes to the rules over the past four years in an attempt to accommodate the religious employers’ objections while still ensuring that female employees would get contraceptive coverage.

But dozens of religious nonprofit employers sued anyway, claiming that even the act of notifying the government of their objections (which would, in turn, trigger a requirement for the government to arrange coverage) made them “complicit” in providing a service they see as sinful.

The court’s opinion, and an accompanying order on several similar cases that were awaiting a decision on whether the high court would take them up, erased all the lower appeals court rulings, all but one of which had sided with the government.

The opinion and order appeared at first glance to put at risk coverage for contraceptives for tens of thousands of employees of the organizations that filed suit.

However, the court made clear that because the employers who have sued have already in effect notified the government of their objections, the government can rely “on this notice, to the extent it considers it necessary, to facilitate the provision of full contraceptive coverage going forward.”

At the same time, however, the opinion said the government “may not impose taxes or penalties on petitioners for failure to provide the relevant notice.”

The goal, the justices wrote, is that both sides “should be afforded an opportunity to arrive at an approach going forward that accommodates petitions’ religious exercise while at the same time ensuring that women covered by petitioners’ health plans ‘receive full and equal health coverage, including contraceptive coverage.’ “

Both sides in the dispute claimed at least a partial victory.

“From our point of view this is a win for religious liberty,” said Mark Rienzi, a senior counsel for the Becket Fund for Religious Liberty, which is representing the Little Sisters of the Poor, one of the groups that sued the government. “The government can find ways to give out contraception without hassling nuns.”

But at the same time, said Louise Melling, deputy legal director of the Americans Civil Liberties Union, “the opinion states clearly the need for women to receive full and equal coverage.”

Contraceptive advocates also pointed to a concurring opinion from Justices Sonia Sotomayor and Ruth Bader Ginsburg that stressed that the decision should not be read as approving coverage strategies that make it harder for women to get the benefits.

“Requiring standalone contraceptive-only coverage would leave in limbo all of the women now guaranteed seamless preventive-care coverage under the Affordable Care Act,” they wrote. “And requiring that women affirmatively opt into such coverage would ‘impose precisely the kind of barrier to the delivery of preventive services that Congress sought to eliminate.’ “

It remains unclear what the lower courts might do. In an effort to break what was clearly a 4-4 deadlock, the court in March asked each side for supplemental material outlining potential compromises. The decision Monday referred to those new briefs as suggesting that providing contraceptive coverage without requiring notice from religious employers “is feasible.”

But Sotomayor and Ginsburg, in their concurring opinion, noted that “the Courts of Appeals remain free to reach the same conclusion or a different one on each of the questions presented by these cases.”

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. You can follow Julie Rovner is on Twitter: @jrovner.

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Feminine products are having a moment. With some calling for a red wave to take the taboo out of menstruation, politicians across the country are trying to make tampons and sanitary pads as affordable and accessible as possible.

Five states have eliminated sales taxes on pads and tampons: New Jersey, Pennsylvania, Massachusetts, Maryland and Minnesota. In New York, a bill awaits the governor’s signature, and other efforts to improve access to sanitary products are underway.

The bill would reclassify pads and tampons so they’re exempt from the 4 percent state sales tax, like many other items on pharmacy shelves, including bandages, swabs and contraceptives. The bill passed both houses of the legislature, and Gov. Andrew Cuomo’s media representative has spoken positively about it.

In New York City, a bill would provide free sanitary supplies in schools, homeless shelters and prisons. Council speaker Melissa Mark-Viverito backs the bill, and the mayor has expressed support for the cause.

New York lawmakers in Congress are working on the issue, too. Rep. Grace Meng, D-Queens, has introduced the Fund Essential Menstrual Products Act of 2015 (also known as the FEM Products Act). It would make feminine hygiene products eligible for purchase with pretax Flexible Spending Accounts. And Rep. Carolyn Maloney, D-Manhattan, has asked the National Institutes of Health to research the safety of certain fibers and chemicals used in the products.

As is so often the case, politics is catching up with pop culture. Although menstruation management has long been a favorite topic among comedians including Tina Fey and Key & Peele, tampon advertisements now mock the euphemistic ads of yore, and period starter kits are being marketed with cheeky YouTube videos.

That may help make it easier for proponents of the legislation to push ahead. “Everyone’s talking about this inequity,” says New York Assembly Member Linda Rosenthal, who introduced the state tax exemption bill.

At the High School for Arts and Business in Queens, a simple machine may be a game-changer. It has dispensed free tampons and pads since September.

“It keeps me from missing class, in case I need one,” says sophomore Emily Torres. “I don’t have to worry about accidents. It’s always there if I need it.”

The school is one of 25 around the city piloting the dispensers this school year. Previously, students had to get tampons or pads from the school nurse.

“You go to the nurse’s office when you’re sick,” says City Council Member Julissa Ferreras-Copeland, has advocated for free menstrual supplies in all schools. “These girls aren’t sick. Getting your period just says that you’re healthy.”

Principal Ana Zambrano-Burakov thinks making it easier for girls to get these products has improved class attendance.

“I have heard sometimes girls stay home because they don’t have the money to buy what they need, and that’s no longer the case,” she says. “I just want girls to stay in school and do well, and we’re going to support them no matter what.”

Rosenthal isn’t sure exactly where the momentum is coming from. When she introduced her bill last year it got nowhere. Even this year, despite the unanimous support, she said the legislative discussion was awkward for some.

“I used the words ‘period’ and ‘blood’ and they were shifting in their chairs,” she says. “Some couldn’t look at me because I was saying these words.”

As High School for Arts and Business student Ashley Celik might put it: that’s on them.

“Sometimes when guys overhear us, they’re like, ‘Omigod! Gross! Keep it to yourself!” she said. “Of course we’re going to talk about it. It’s something normal. You shouldn’t be telling us we shouldn’t be talking about it because it’s awkward for you.”

This story is part of a reporting partnership with NPR, WNYC and Kaiser Health News.

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Many veterans are still waiting to see a doctor.

Two years ago, vets were waiting a long time for care at Veterans Affairs clinics across the country. At one facility in Phoenix, for example, veterans waited an average of 115 days for an appointment. Adding insult to injury, some VA schedulers were told to falsify data to make it looks like the waits weren’t that bad.

The whole scandal ended up forcing the resignation of Eric Shinseki, secretary of the Department of Veterans Affairs at the time.

Congress and the VA came up with a fix: Veterans Choice, a $10 billion program that was supposed to give veterans a card that would let them see a non-VA doctor if they were more than 40 miles away from a VA facility or they were going to have to wait longer than 30 days for a VA provider to see them.

There was a problem, though. Congress gave the VA only 90 days to set up the system. Facing that extremely tight time frame, the VA turned to two private companies to administer the program and help veterans get an appointment with a doctor and then work with the VA to pay that doctor.

Although the idea sounds simple enough, the fix hasn’t worked out as planned. Wait times have gotten worse — not better. There are 70,000 more vets waiting at least a month for an appointment than there were at this time last year.

The VA claims there has been a massive increase in demand for care, but it’s apparent the problem has more to do with the way Veterans Choice was set up. The program is confusing and complicated. Vets don’t understand it, doctors don’t understand it and even VA administrators admit they can’t always figure it out.

Veterans Face Delays and Worry

The problems are evident in Montana, which has more veterans per capita than any state except Alaska.

This winter, when Montana Sen. Jon Tester sent his staff to meet with veterans across the state, Bobby Wilson showed up at session in Superior. Wilson, a Navy vet who served in Vietnam, is trying to get his hearing aids fixed.

But he says he’s mired in bureaucracy. “The VA can’t do it in 7 months, 8 months? Something’s wrong,” he says. “Three hours on the phone,” trying to make an appointment. “Not waiting,” he says, “talking for three hours trying to get this thing set up for my new hearing aids.”

Tony Lapinski, a former aircraft mechanic with the Air Force, has waited for answers on the phone with Health Net, one of the two contractors the VA selected to help Veterans Choice patients.

“You guys all know the Health Net piano?” he says. “They haven’t changed the damn elevator music in over a year!” That elicits knowing chuckles from the audience. In an interview later, he says, “They are the nicest boiler room telemarketers you have ever spoken to. But that doesn’t get your medical procedure taken care of.”

Lapinski has an undiagnosed spinal growth, and he’s worried. “Some days I wake up and go, ‘Am I wasting time, when I could be on chemotherapy or getting a surgery?’ ” he says. “Or six months from now when I still haven’t gotten it looked at and I start having weird symptoms and they say, ‘Boy, that’s cancer! If you had come in here six months ago we probably could have done something for ya, but it’s too late now!’ “

Lapinski finally got to a neurosurgeon, but he didn’t exactly feel like his Choice card was carte blanche. Doctors, it turns out, are waiting, too – for payment, he says.

“You get your procedure done, and you find out that two months later the people haven’t been paid. They have got $10 billion that they have to spend, and they are stiffing doctors for 90 days, 180 days, maybe a year!” says Lapinski. “No wonder I can’t get anyone to take me seriously on this program.”

He says he gets it. He used to do part-time work fixing cars, and he would still take jobs from people who had taken more than 90 days to pay him or bounced a check. But he did so reluctantly.

“I had a list of slow-pay customers,” he says. “I might work for them again but everybody else came before them. So why would it be any different with these health care professionals?”

Hospitals, clinics and doctors across the country have complained about not getting paid, or only paid very slowly. Some have just stopped taking Veterans Choice patients altogether, and Montana’s largest health care network, Billings Clinic, doesn’t accept any VA Choice patients.

Not cool, says Sen. Tester of Health Net and other contractors.

“The payment to the providers is just laziness,” he says. “I’m telling you, it’s just flat laziness. These folks turn in their bills, and if they’re not paid in a timely manner, that’s a business model that’ll cause you to go broke pretty quick.”

The VA now admits the rushed time frame led to decisions that resulted in a nightmare for some patients.

Health Net declined to be interviewed for this story. But in a statement, the company says the VA has recently made some beneficial changes that are helping streamline Veterans Choice. For example, the VA no longer demands a patient’s medical records be returned to VA before it pays the bill.

Meanwhile, though, veterans continue to wait. “If I knew half of what I knew now back then when I was just a kid, I would’ve never went in the military,” says Bobby Wilson. “I see how they treat their veterans when they come home.”

Scheduling Lags Also Irk The Doctors Offices And The VA

On the other side of the coin, doctors are frustrated in dealing with another government health care bureaucracy.

In Gastonia, N.C., Kelly Coward, a surgery scheduler at Carolina Orthopaedic & Sports Medicine, dials yet another veteran with bad news.

“I’m just calling to let you know that I still have not received your authorization for Health Net federal. As soon as I get it, I will give you a call and let you know that we have it and we can go over some surgery dates,” she tells a veteran.

The practice sees about 200 veterans. Dealing with Health Net has become a time-consuming part of her job.

“I have to fax and refax, and call and recall. And they tell us that they don’t receive the notes. And that’s just every day. And I’m not the only one here that deals with it,” she says.

Carolina Orthopaedic’s business operations manager, Toscha Willis, is used to administrative headaches. They’re part of the deal with health care, she says, but she’s never seen something like this.

It takes, “multiple phone calls, multiple re-faxing of documentation, being on hold one to two hours at a time to be told we don’t have anything on file,” she says. “But the last time we called about it they had it, but it was in review. You know, that’s the frustration.”

It can take three to four months just to line up an office visit.

The delays have become a frustration within the VA, too. Tymalyn James is a nurse care manager at the VA clinic in Wilmington, N.C. She says Choice has made the original problem worse. When she and her colleagues are swamped and refer someone outside the VA, it’s supposed to help the veteran get care more quickly. But James says the opposite is happening.

“The fact is that people are waiting months and months and it’s like a, we call it the black hole,” she says. “As long as the Choice program has gone on, we’ve had progressively longer and longer wait times for Choice to provide the service, and we’ve had progressively less and less follow through on the Choice end with what was supposed to be their managing of the steps.”

The follow-through is lacking in two ways. The first is the lengthy delay in approving care. And after that’s finally resolved, there’s a long delay in getting paid for the care.

At least 30 doctor’s offices across North Carolina are dealing with payment problems, some that have lasted more than a year.

Carolina Orthopaedic’s CEO Chad Ghorley says his practice is getting paid after it provides the care. It’s the lengthy delay on the front end that puts a burden on the staff and, he worries, puts veterans at risk. He’s a veteran himself.

“The federal government has put the Band-Aid on it when there’s such a public outcry to how the veterans are taken care of, all right?” he says. “Well, they’ve got the Band-Aid on it to get the national media off their backs. But the wound is still open, the wound is still there.”

Those experiences for both veterans and providers are typical. Congress is now working on a solution to the original solution, a bill is expected to clear Congress by the end of the month.

This is part of a collaboration with NPR’s Back at Base project, local member stations and Kaiser Health News.

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For Tim Goliver and Luther Glenn, the worst illness of their lives started in the same way — probably after having a stomach bug.

Tim was 21 and a college student at the University of Michigan. He was majoring in English and biology and active in the Lutheran church. “I was a literature geek,” says Tim. “I was really looking forward to my senior year and wherever life would take me.”

Luther was in his 50s. He’d spent most of his career as a U.S. military policeman and was working in security in Washington, D.C. He’d recently separated from his wife and had just moved into a new house with his two daughters, who were in their 20s.

Both men recovered from their stomach bugs, but a few days later they started to feel sluggish.

“Here we are trying to unpack, prepare ourselves for new life together and I’m flat out, dead tired,” says Luther. He fell asleep in the car one morning and never made it out of the garage. Then he fell in the bathroom.

For Tim, it started to feel like running a marathon just to lift a spoonful of soup. One morning, he tried to comb his hair and realized he couldn’t lift his arm above his shoulder. “At that moment I started to freak out,” he says.

Both men got so weak that their families had to wheel them into the emergency room in wheelchairs. They got the same diagnosis: Guillain-Barre syndrome, a neurological disorder which can leave people paralyzed for weeks.

People who come down with Guillain-Barre typically have had some sort of illness a few days or weeks before like the flu, says Dr. Ken Gorson, a neurologist at Tufts School of Medicine and St. Elizabeth’s Medical Center in Boston. He’s on the medical advisory board of GBS/CIDP Foundation International, which is dedicated to Guillain-Barre syndrome.

In many cases the trigger is a bacterial infection like Campylobacter jejuni, which sometimes contaminates undercooked chicken. In super-rare cases, people have developed Guillain-Barre after getting certain vaccines. The patient gets well, and then “within days or a week, has terrible numbness or tingling and weakness,” says Gorson.

The syndrome gets its name from two French military doctors, Georges Guillain and Jean Alexandre Barre. In 1916 they diagnosed two World War I soldiers with the illness. The soldiers had come to the military hospital weak and with a tingling sensation up their arms and legs. One tried to leave at 5 am to rejoin his comrades, but fell down with his backpack on and couldn’t get back up.

Here’s what happens. The immune system launches an attack against the pathogen that’s making someone sick. It succeeds and the person gets better, but the immune system doesn’t realize the battle is over and attacks stuff in the body. Unfortunately, that can include the myelin coating around nerves.

“The immune system is by mistake attacking the peripheral nerves,” says Gorson.

That is not good, because like the insulation around an electrical wire, if the nerve coating gets damaged the messages traveling from the central nervous system to the rest of the body can get lost.

Tim and Luther were admitted to the hospital and were told to expect a quick decline. Their blood was filtered to remove the antibodies attacking their own bodies, and they received injections of antibodies from donated blood.

No matter what the cause, a diagnosis of Guillain-Barre syndrome, or GBS, usually means you’re about to go through something really traumatic. You can expect to lose almost everything that makes you you. That could mean not being able to walk, to talk – even to breathe.

But after weeks or months in the intensive care unit you’ll gain it back. Probably.

Gorson says about 80 percent of people who come down with Guillain-Barre will recover almost fully. Very few die. And some people recover, but never fully regain their abilities. And no one knows while in the midst of Guillain-Barre how much they’ll get back.

“I was watching TV and I lost use of the right side of my face. All the muscles just sagged,” says Tim, recalling the first few days in the hospital.

Within five days of entering the hospital, the muscle that used to lift Tim’s lungs for each breath went lax, so nurses stuck a breathing tube down this throat, taping it to his mouth. Then he had to go on a ventilator, through a tube that went straight to his windpipe through a hole in his neck.

“You feel like your body is a bellows and you feel like you’re being pumped and fanned again, again, again,” says Tim.

Because Tim’s nerves were under attack, every little touch was excruciating — even a soft towel felt like steel wool digging into his skin. And he’d lost control over his mouth and throat muscles, so he couldn’t talk anymore. He could blink and nod to some extent, but that was about it.

“I was just completely unable to move and I just would watch the same episode of Sports Center again and again on replay and feel like I was in a loop and things were totally out of control,” says Tim.

When friends and family came over, they’d communicate to him with a poster full of letters, slowly dragging their fingers across each letter until Tim nodded or blinked to indicate he wanted to use it to spell something out. It could take 10 minutes to spell out one word.

For weeks, he lay paralyzed and silent, fed through a tube in his side. When he did start breathing on his own again, Tim says each breath was so nerve-racking it felt like he was about to fall off the edge of a cliff.

“But bit by bit, it got to the point where I was able to do that and it felt like I was in control,” he says. Tim spent two months in the intensive care unit and two months in rehab, and then went home in an electric wheelchair.

Luther lost mobility, too, and spent weeks in intensive care. But he was able to breathe and talk the whole time.

“I remember my sister saying, ‘GBS took everything else away but didn’t take his mouth away,’ ” says Luther, laughing.

During his years in the military, Luther had routinely aced the physical fitness tests. He trained about 2,000 recruits and sent them off on their military careers. There’s an old saying, “the more you sweat in peace, the less you bleed in war,” he says.

“The military gave me the idea that I could do just about anything, so when I was in the hospital, I looked at this illness as just another mission that I had to accomplish,” says Luther.

He loved being in shape because it was the one thing he knew he could control, but Guillain-Barre syndrome made him so weak that he couldn’t even blink. When he fell asleep, his eyes would just roll back in his head. The nurses had to put gel on his eyes so they wouldn’t dry out at night. After six weeks in the hospital, he saw himself in a mirror for the first time.

“And when I looked up, I was shocked. I was floored that that was me — this thin, gaunt guy. That was probably more shocking to me than anything,” he says.

He’d lost about 30 pounds. For his birthday, the nurses pureed a cake for him because his face and throat muscles were too weak to chew and swallow solid food. “It was horrible, but I loved them for it,” he says.

For a while, things did not look good – he wasn’t making any progress toward moving again. But when a doctor told Luther that most people fully recover, that gave him hope. “It’s on. I got this, Doc,” he said. “GBS done messed with the wrong person.”

Every night he’d give himself a pep talk, repeating a line from a song. ” ‘Nobody told me the road would be easy, but I don’t believe He brought me this far to leave me.’ Just say that every night. Every night,” he says.

One day, Luther moved his hand ever so slightly. Then a muscle twitched in his leg. A few days later, he blinked. After months in the hospital, he was transferred to rehab, where he learned how to move around in a wheelchair.

Finally he was able to return to the house that had been full of boxes when he left about six months before. He had to live in the basement because he couldn’t get up the stairs. His progress at home was excruciatingly slow.

“Days start running into weeks, weeks start running into months,” he says.

Luther was not one of the lucky 80 percent. He’s in the 20 percent of GBS patients who don’t recover fully. For the most part, he’s independent. He lives in his own apartment at National Harbor near Washington, D.C. An aide stops by three times a week to help out with cleaning and cooking. He goes out to movies and dinner with his family in an electric wheelchair. He loves to read on a dock at the harbor. He’s even learning Spanish. But he still can’t take more than a few steps with a walker, and just moving his face enough to talk can feel like a muscular feat.

“One of the things I hate the most is that I lost my ability to smile. It’s difficult for me to do. It looks almost like a grimace,” he says.

It’s been six years since he first got sick.

“It doesn’t dishearten me, but I realize this just might be my plight, so I take a smile with me and let’s go. Make the best of it,” he says.

Tim, on the other hand, recovered almost fully. He quickly regained his ability to talk and work. He went back to school and got his degree. He even proposed to his wife at the top of a mountain.

“At the point where I started to walk up mountains again without pain, I felt that I had conquered the actual experience. I look at it now and I don’t see anything that it’s keeping me from doing,” says Tim.

He has leather braces to stabilize his ankles, some tingling in his feet, and a very small scar on his throat from the ventilator, a mark from when he hit rock bottom. That’s about it.

Why did Tim recover so much more function than Luther did? And why did the two of them get Guillain-Barre syndrome when so many other people who were exposed to the same bugs didn’t?

“Unknown,” says neurologist Gorson. “There’s clearly an interaction between the infectious agent, the immune response, and then something that’s special or unique about the patient’s peripheral nerve system,” he says. Sometimes it has to do with age, medical care, how much nerve damage happened, or even the kind of bacteria or virus that caused the illness in the first place.

Predicting how much a patient will recover is one of the things Gorson and other neurologists are trying to figure out. They’re collecting blood from over 1,000 people around the world, hoping to find out what triggers some people’s immune systems to react in such an extreme way. It might lead to better treatments, or maybe even something they can do to stop the progression of the disease before it gets so bad.

If the Zika virus does begin spreading through the U.S. as predicted, there may be more cases of Guillain-Barre syndrome. The condition will still remain rare, but even a slight increase in cases could be horrible — not just for the people who get it, but also due to the strain it puts on hospital intensive care units and insurers.

“I cost over a million dollars, and that is something I have never forgotten,” says Tim.

Tim and Luther did not get Guillain-Barre from Zika. But the result is the same. And if their cases show anything, it’s that no matter what the cause, the disease is one wild ride.

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Last year, in an operating room at the University of Toronto, a 63-year-old women with Alzheimer’s disease experienced something she hadn’t for 55 years: a memory of her 8-year-old self playing with her siblings on their family farm in Scotland.

The woman is a patient of Dr. Andres Lozano, a neurosurgeon who is among a growing number of researchers studying the potential of deep brain stimulation to treat Alzheimer’s and other forms of dementia. If the approach pans out, it could provide options for patients with fading cognition and retrieve vanished memories.

Right now, deep brain stimulation is used primarily to treat Parkinson’s disease and tremor, for which it’s approved by the Food and Drug Administration. DBS involves delivering electrical impulses to specific areas of the brain through implanted electrodes. The technique is also approved for obsessive-compulsive disorder and is being looked at for a number of other brain disorders, including depression, chronic pain and, as in Lozano’s work, dementia.

In 2008, Lozano’s group published a study in which an obese patient was treated with deep brain stimulation of the hypothalamus. Though no bigger than a pea, the hypothalamus is a crucial bit of brain involved in appetite regulation and other bodily essentials such as temperature control, sleep and circadian rhythms. It seemed like a reasonable target in trying to suppress excessive hunger. To the researcher’s surprise, following stimulation the patient reported a sensation of deja vu. He also perceived feeling 20 years younger and recalled a memory of being in a park with friends, including an old girlfriend. With increasing voltages, his memories became more vivid, including remembering their clothes.

Using a 3-dimensional brain mapping technique called standardized low-resolution brain electromagnetic tomography, or sLORETA, Lozano’s group uncovered an explanation for the unexpected findings. They found that stimulating the hypothalamus was in turn driving increased brain activity in the hippocampus, a key cog in the brain’s memory circuitry. As Alzheimer’s progresses, not only does the hypothalamus atrophy, but electrical communication between neurons in the region also gradually becomes impaired.

That our memories — so entwined with our personalities and senses of self — might be so vulnerable to a brown out is, existentially speaking, rather alarming. There’s something palpably dehumanizing about reducing our past selves to the exchange of electricity between neurons, and also about retrieving memories by hot-wiring the brain.

Yet the prospect of the latter is undeniably intriguing. Given that Alzheimer’s affects 1 in 9 people over the age of 65 and that current therapies are in many patients dismally ineffective, Lozano felt all but obligated to dig further. His group launched a test in six patients and published the results in the Annals of Neurology in 2010.

The study included patients with mild and severe disease who received stimulation in the fornix continuously for 1 year. “The fornix is like the highway leading into the hippocampus,” explains Lozano. “It’s easier to stimulate than the hippocampus itself and crucial to memory function.” As expected those with more severe disease continued to mentally deteriorate, however it appeared that in those with mild disease, cognitive decline slowed with stimulation.

Next, Lozano launched a randomized trial involving 42 patients from the US and Canada, all of whom had electrodes implanted in the fornix on both sides of the brain. In half the patients the stimulation was turned on right away. In the other half the stimulation wasn’t turned on for a year, though they didn’t know it.

Preliminary results, published in December 2015 in the Journal of Neurosurgery, were mixed but encouraging.

Given that so few people have had electrical stimulation applied to memory circuits, perhaps the most significant finding was that both the surgery itself and DBS of the fornix appear safe. No serious long-term neurological side effects were seen in either patient group, supporting future research in the field.

In terms of efficacy, however, after one year there were no significant differences in cognition between the groups, as measured by two scales commonly used to measure Alzheimer’s disease symptoms, the ADAS-Cog and CDR-SB. Alzheimer’s tends to progress slowly and reversing or slowing the neurodegeneration associated with condition may take time to become noticeable. Lozano’s final results won’t be reported until four years out.

More intriguing for now were comparisons of glucose utilization. Glucose is our brains’ primary fuel. The degree to which glucose is burned is a commonly used measure of brain activity. Patients with Alzheimer’s typically have reduced glucose activity in their brains, as well as, again, shrinking memory circuits. The older patients in Lozano’s study who had stimulation turned on exhibited markedly increased glucose use in the brain’s memory regions. Not only that, the hippocampus of some study patients who received DBS actually increased in size.

Reversing withering hippocampi by encouraging the growth of new neurons is seen as a holy grail in Alzheimer’s research, and Lozano’s finding is supported by a recent animal study demonstrating that DBS in rats causes the release of growth factors that induce neuronal growth in the hippocampus.

Lozano acknowledges that retrieving childhood memories, which he says has occurred in about one-third of his patents — requires lofty voltages that he would be uncomfortable sending patients home on. Yet he’s encouraged by the early findings that suggest the procedure is safe. “We also know that in patients who receive stimulation there is an increase in glucose utilization in memory areas of the brain,” he says, a finding that could mean there’s a way to overcome some of the damage from Alzheimer’s.

Evidence supporting DBS in dementia is emerging from other research groups as well. A 2012 study published in the New England Journal of Medicine reported that in seven patients receiving DBS to a brain region called the entorhinal cortex, spatial memory improved – meaning they could more easily remember the locations of newly learned landmarks. The entorhinal cortex works in concert with the hippocampus to solidify memories.

A group at the University of Cologne in Germany is instead focusing on delivering DBS to a part of the brain called the nucleus basalis of Meynert, another region in which impaired neuron function is thought to contribute to Alzheimer’s. Last year they published a study in Molecular Psychiatry in which four of six patients either remained cognitively stable or improved in response to DBS, as measured by the ADAS-cog. Like in Lozano’s study no serious side effects were seen.

Despite the mounting evidence for DBS, not everyone is convinced.

Referring to Lozano’s second clinical study, Dr. Nader Pouratian, a neurosurgeon and DBS researcher at UCLA, comments, “The recent deep brain stimulation trial for Alzheimer’s disease clearly demonstrates the safety of this approach for trying to treat the progression of disease. Unfortunately, [the findings] suggest that the therapy may not be as robust as initially proposed.”

However he acknowledges Lozano’s results suggest that DBS to the fornix might be promising for a subgroup of patients, those being older people with less severe disease.

“The most promising areas are likely the fornix or the entorhinal area,” he says. “But I believe further studies are necessary to better elucidate the efficacy of this treatment before proceeding to a larger scale randomized trial.”

In a 2008 episode of the medical television drama House, the show’s main character Dr. Gregory House survives a bus crash that leaves his memory murky. In an attempt to remember the medical history of a fellow collision victim – and inspired by Lozano’s initial paper — House voluntarily undergoes deep brain stimulation. Following the procedure the grouchy TV doctor’s memory returns. As is customary on the show, he cracks the case.

DBS for treatment of Alzheimer’s and other dementias is a field in its infancy. Unlike on TV, in all likelihood it won’t be widely used anytime soon to retrieve specific memories. “Even though House did this, we’re not doing it yet,” cautions Lozano.

Yet the fact that the therapy can in some people rescue recollections – albeit random ones – and possibly induce new neuron growth in memory regions of the brain seems reason enough to pursue it further.

“We’re hoping to use electricity to drive activity in areas of the brain involved in memory and cognition,” says Lozano. “We want to turn these brain networks back on.”

Bret Stetka is a writer based in New York and an editorial director at Medscape. His work has appeared in Wired, Scientific American and on The Atlantic.com. He graduated from University of Virginia School of Medicine in 2005. He’s also on Twitter: @BretStetka.

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NPR’s Robert Siegel talks to physician and author Siddhartha Mukherjee about how the fight against cancer has changed so dramatically in this era of precisely targeted treatments.

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Brandy Beck considers herself lucky. As a breast-feeding mom, the Frontier Airlines pilot has experienced severe breast pain, engorged breasts, clogged ducts, decreased milk supply, three interruptions while pumping at work, and pumping in airport and airplane bathrooms.

But unlike some of her colleagues, she escaped mastitis. Mastitis is a bacterial infection of the breast that can occur with clogged milk ducts if women cannot fully express their breast milk. And not receiving adequate, legally required accommodations for pumping breast milk at work is precisely why Beck and fellow Frontier pilots Randi Freyer, Shannon Kiedrowski and Erin Zielinski are involved in a complaint against Frontier Airlines.

“All four of us love our jobs, we love flying for Frontier and we love flying airplanes,” Beck says. “Most of us have wanted to do it all our lives, and we just want some equality in the workplace.”

The American Civil Liberties Union, the ACLU of Colorado and the law firm Holwell Shuster & Goldberg LLP filed discrimination charges May 10 with the Equal Employment Opportunity Commission on the women’s behalf. The charges claim that Frontier is discriminating against women by not providing sufficient accommodations for pregnant and breastfeeding employees.

“This has been a long process of trying to struggle to get these accommodations with no success,” says Galen Sherwin, a senior staff attorney with the ACLU in the women’s right project. “This lawsuit is the necessary last resort.”

According to Sherwin, the ACLU and the law firm sent Frontier management a letter describing the women’s difficulties and several possible solutions, including temporary non-flying assignments that would allow easier accommodations, extension of maternity leave if the women wanted it and designated places where the women could pump in airports Frontier uses and on the plane when necessary.

For its part, the airline says that it already provides places that comply with federal and Colorado state requirements in all airports it uses, according to Cindi Ruff, vice president of human resources at Frontier. Women can contact the station manager of each airport to find the location, she says.

“If they do [have those stations], they have not communicated that to the women I’ve spoken with, including women beyond these four pilots, despite repeated requests,” Sherwin says. “If it’s up to the individual woman to contact each individual airport on her own, that would not be a sufficient accommodation. It’s tantamount to providing no support to the women.”

Beck says the stations she does know of are often a half mile from Frontier gates and are sometimes insufficient, such as the one at Denver airport that was being used for storage when she needed it. As directed by an assistant pilot, she used a vacated office — and movers attempted to enter while she was pumping.

Any temporary reassignments are governed by the collective bargaining agreement of the pilots’ union, Ruff told Shots. That contract only addresses non-flying reassignments for on-the-job injuries and states that pilots who cannot return to work after four months may be entitled to receive an unpaid medical leave of absence. Maternity leave also is unpaid.

“We assume that Frontier is in compliance with the Americans with Disabilities Act, which requires employers to provide reasonable accommodations, and temporary reassignment is one potential accommodation that Frontier that would be legally obligated to provide,” Sherwin said. “If they’re offering that to people with disabilities, then they should be offering that to women.”

Sherwin added that medical leave has only been granted for serious childbirth complications leading to physical injury or postpartum depression, and that breast-feeding women who requested it were denied.

Shannon Kiedrowski, one of the pilots involved in the suit, writes that she “battled for months to get Frontier’s management to help future new moms.” But, she says, “my efforts went nowhere.”

Frontier’s Ruff says that the airline has worked with pilots who have raised concerns and adjusted their schedules to have less flying time.

But less flying time doesn’t address the needs for accommodations during flying time, Sherwin says. Beck says she plans her flight days carefully to schedule in pumping time, but unexpected and sometimes long flight delays can interfere, necessitating pumping during a flight.

“This situation is unique, but ultimately it’s all about the safety of our passengers,” Ruff says. “Being on an aircraft and being a pilot is a very unique situation, unlike any other profession, and unfortunately there are sometimes limitations in what can be extended to an individual.”

The challenges for pilots are similar to those for surgeons operating, where the patient’s safety is paramount, says Katy Kozhimannil, an associate professor of health policy and management at the University of Minnesota School of Public Health.

“It is a unique circumstance, but there are other circumstances where businesses face similar challenges in managing the trade-off between the safety of the patients or passengers and the urgent health needs of their employees,” Kozhimannil says. “If there are barriers, that’s certainly understandable, and maybe there’s a need for greater support for employers. But there have to be ways to try to address the needs of nursing mothers. It’s extraordinarily important, and it’s the law.”

Pilots needing bathroom breaks leave the cockpit to do so, and the copilot must don an oxygen mask while the pilot is gone, Ruff says.

“The request is that women be permitted to take breaks during flights as needed on the same terms that pilots are able to address their other bodily needs,” Sherwin says. “To say to a woman who’s breast-feeding that you can’t leave the cockpit to take care of her bodily needs but to allow everyone else to leave to use the bathroom is sex discrimination.”

It can also have health consequences, Kozhimannil says. Her research has found that only 40 percent of full-time or part-time employed women surveyed in 2011 and 2012 have been provided both break time and private space to express breast milk, as required by the Affordable Care Act. Those women were also twice as likely to be exclusively breast-feeding at 6 months and more likely to breast-feed at all with each passing month.

“That’s unsurprising, given the physiology of breast-feeding, because women need to express breast milk during the day when they’re away from their child for their bodies to keep producing breast milk,” Kozhimannil says. “When you stop expressing breast milk, your supply diminishes and you’re no longer able to breast-feed.” Clogged ducts and mastitis are other risks of not adequately expressing breast milk.

One possible solution more broadly would be state or federal laws requiring paid family leave, enabling the pilots to take a longer unpaid leave without losing as much income. Pilots are already required to start unpaid maternity leave 8 weeks before their due date and have the option of four more unpaid months after delivery.

“I believe it’s unrealistic to ask a working mom to come back after four months and be away from her child for four to five days,” Beck says, adding that the problem is industry wide for pilots and flight attendants. “Some people can afford that, and some people can’t. The most ideal solution is to have choices, because every individual needs something different.”

The U.S. is the only country in the world besides Papua New Guinea that does not require employers to provide any paid family leave, says Ellen Bravo, executive director of Family Values @ Work, a network of coalitions working for paid leave policies.

“We tell women to be good mothers and then we punish them for doing so by making their family suffer financial insecurity or by shaming them for doing something like breast-feeding,” Bravo says. “That’s got to change. It’s a scandal that nearly one in four women go back to work within two weeks.”

The only states currently requiring paid family leave are California, New Jersey, Rhode Island and, as of April 1, New York.

The lawsuit does not request money, Sherwin says.

“They would like ideally to have Frontier adopt these solutions so no other women would have to go through what they went through,” Sherwin says. “It’s 2016. It shouldn’t be that women have to choose between their jobs and breast-feeding their babies, and that’s why our clients are bringing the case.”

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Bolstered by the federal health care law, the number of lower-income kids getting health coverage continues to rise.

During 2014, the first full year of the law’s implementation, 91 percent of children who were eligible for Medicaid or the Children’s Health Insurance Program were enrolled, according to a study by researchers at the Urban Institute. In 2013, that figure was 88.7 percent and only 81.7 percent in 2008. Medicaid and CHIP are both federal-state health coverage programs for lower-income residents, but CHIP provides coverage for kids whose families earn too much to qualify for Medicaid.

Given that coverage rates were already quite high for children, “I was surprised to see gains to such an extent in 2014, and for that to happen for so many different kinds of kids and in so many different places,” said Genevieve Kenney, co-director of the Urban Institute’s Health Policy Center who was an author of the study.

Not surprisingly, the biggest coverage increases occurred in states that expanded Medicaid to adults with incomes up to 138 percent of the federal poverty level (about $33,500 for a family of four), likely a spillover effect as adults signed up and learned that their kids were eligible, too. So far 31 states and the District of Columbia have adopted the Medicaid expansion.

The coverage increase among children eligible for Medicaid and CHIP mirrors changes in the uninsurance rate for children overall, which fell from 7 percent in 2013 to 5.8 percent in 2014, the researchers noted. They estimated that 4.5 million children younger than 18 are still uninsured. That population varies significantly among states, according to the report, with uninsurance below 4 percent in 14 states and above 9 percent in four: Alaska, Arizona, Nevada and Texas.

There were coverage gains for all types of children between 2013 and 2014, including those of different ethnic groups, ages and family incomes. But progress has been slower for some groups, including adolescents between age 13 and 18 and Hispanic kids in families in which no parent speaks English.

The study used data from the American Community Survey, an ongoing survey by the U.S. Census Bureau that includes data on more than 700,000 children age 18 and younger.

Nearly two-thirds of the 4.5 million children who were uninsured in 2014 were eligible for Medicaid or CHIP, the study found. Many of them have been enrolled in Medicaid at some point in their lives, Kenney said.

“That puts the spotlight on renewal and retention,” said Kenney. States have adopted different strategies to encourage continued coverage. Some have policies that, for example, allow kids to stay enrolled in Medicaid or CHIP for the full year even if their parents’ income or other circumstances change. Others determine whether kids are still eligible for the programs by conducting data checks rather than requiring parents to fill out paperwork.

Kenney said she expects the uninsurance rates for kids improved again in 2015 as more states expanded Medicaid and families enrolled in subsidized insurance on the state marketplaces. This month, Arizona reinstated its CHIP program, after freezing enrollment in 2009, thus extending coverage to more lower income children.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Email questions or ideas for future stories: KHNHelp@KFF.org. Michelle Andrews is on Twitter: @mandrews110.

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