Spinal surgery made it possible for Liv Cannon to plant her first vegetable garden.
"It's a lot of bending over and lifting the wheelbarrow and putting stakes in the ground," the 26-year-old said as she surveyed the tomatillos, cherry tomatoes and eggplant growing in raised beds behind her house in Austin, Texas. "And none of that I could ever do before."
For as long as she could remember, Cannon's activities were limited by chronic pain and muscle weakness.
"There was a lot of pain in my legs, which I can now recognize as nerve pain," she said. "There was a lot of pain in my back, which I thought was, you know, just something everybody lived with."
Cannon saw many doctors over the years. But they couldn't explain what was going on. She'd pretty much given up on finding an answer for her pain until her fiancé, Cole Chiumento, pushed her to try one more time.
"It never improved, it never got better," Chiumento said. "That just didn't sound right to me."
So about two years ago, Cannon went to a specialist, who ordered a scan of her spine. A few days later, her phone rang.
"We found something on your MRI," a voice said.
The images showed that Cannon had been born with diastematomyelia, a rare disorder related to spina bifida. It causes the spinal cord to split in two.
In Cannon's case, the disorder also led to a tumor that trapped her spinal cord, causing it to stretch as she grew.
In December 2017, a neurosurgeon opened her spinal column and operated for several hours, freeing the cord.
"I think it was day three after my surgery I could feel the difference," Cannon said. "There was just a pain that wasn't there anymore."
As she recovered, Cannon saw lots of huge medical bills go by. They were all covered by her insurance plan. Almost a year had passed since the operation.
Then a new bill came.
Patient: Liv Cannon, 26, of Austin, Texas. At the time of her surgery, she was a graduate student insured with Blue Cross and Blue Shield of Texas through her job at the University of Texas.
Total bill: $94,031 for neuromonitoring services. The bill was submitted to Blue Cross and Blue Shield of Texas, which covered $815.69 of the amount and informed her she was responsible for the balance. The insurer covered all of Cannon's other medical bills, which came to more than $100,000, including those from the hospital, surgeon and anesthesiologist.
Service provider: Traxx Medical Holdings LLC, an Austin company that provides neuromonitoring during spinal surgery. Neuromonitoring uses electrical signals to detect when a surgeon is causing damage to nerves.
Medical service: Cannon was born with a rare spinal condition that had caused chronic pain and muscle weakness since she was a child. In December 2017, she had successful spinal surgery to correct the problem. Her surgeon requested neuromonitoring during the operation.
What gives: Neuromonitoring made sense for the type of surgery Cannon had. The bill did not. Cannon should have been warned long before her surgery that the neuromonitoring company would be an out-of-network provider whose fees might not be covered by her insurer.
At first, she was baffled by the billing information Blue Cross sent her. "It was one of those things from the insurance company that says this is the amount we cover and this is the amount you might owe your provider," she said, referring to her explanation of benefits.
The statement listed four separate charges from the day of her surgery. Each was described as a "diagnostic medical exam." Together, they came to $94,031.
Blue Cross said the covered amount was $815.69 — minus a $750 deductible and $26.27 for coinsurance — and informed Cannon she might have to pay the balance: $93,991.58.
"I was shocked," she said. Chiumento was outraged.
"As soon as I saw that, I thought it was a scam," he said.
The charge came from Traxx Medical Holdings LLC, an Austin company. Traxx did not respond to emails, phone calls and a fax seeking comment on the charge.
The company's websiteshows that Traxx provides a service called intra-operative neuromonitoring, which evaluates the function of nerves during surgery. The goal is to help a surgeon avoid causing permanent damage to the nervous system.
There is an ongoing debate about whether neuromonitoring is needed for all spinal surgery. But it is standard for a complicated operation like the one Cannon had, said Rich Vogel, president of the American Society of Neurophysiological Monitoring.
On the other hand, a $94,000 charge for the service can't be justified, Vogel said.
"You're not going to meet anybody who believes that a hundred thousand dollars or more is reasonable for neuromonitoring," Vogel said.
Most neuromonitoring companies charge reasonable fees for a valuable service and are upfront about their ownership and financial arrangements, he said. But some companies are greedy and submit huge bills to an insurance company, hoping they won't be challenged, he added.
Even worse, "some neuromonitoring groups charge excessive fees in order to gain business by paying the money back to surgeons," Vogel said.
Last year, Vogel's group published aposition statement condemning these "kickback arrangements" and other unethical business practices.
It is unclear whether Traxx has any financial arrangements with surgeons. Cannon's surgeon did not respond to requests for comment.
The size of the fee for Cannon's monitoring was only part of the problem. The other part was that Traxx — unlike her hospital, doctor and anesthesiologist — had no contract with Blue Cross and Blue Shield of Texas. As an out-of-network provider, the company could set its fees and try to collect from Cannon any amount it didn't get from her insurer.
Blue Cross and Blue Shield of Texas said it doesn't comment on problems affecting individual members. But the insurer did offer a general statement by email about the problem:
"Unfortunately, non-contracted providers can expose our members to significantly greater out-of-pocket costs. These charges often have no connection to underlying market prices, costs or quality. If given the opportunity, we will try to negotiate with the provider to reduce the cost."
One thing working against Cannon is that she is pretty sure that, just before surgery, she signed a paper that authorized the out-of-network neuromonitoring.
"It was 4:30 in the morning and you're like, 'OK, let's get this over with,'" she recalled.
Getting consent in the hospital may be legal, but it's not reasonable, said Dr. Arthur Garson Jr., who directs the Health Policy Institute at the Texas Medical Center in Houston.
For example, a patient might be having a heart attack, Garson said. "You got chest pain, you're sweating, sick as you can be, and they hand you a piece of paper and they say, 'Sign here.'"
The Texas Legislature passed a bill in May to protect patients from the sky-high bills this practice can produce. And Congress is considering similar legislation.
These are small steps in the right direction, Garson said.
"Asking the individual patient to make that decision even when they're not sick I think is difficult," he said, "and maybe we ought to think of some better way to do it."
The Texas legislation is expected to take effect later this year but affects only bills that occur after it becomes law. So that $94,000 figure is never far from Cannon's mind, even as she and Chiumento plan their wedding.
"Every time I go out and I collect the mail, I'm wondering, 'Is this the day it's going to show up and we're going to have to deal with this?'" she said.
The Takeaway: Neuromonitoring during complex surgery involving the spine can help prevent inadvertent damage. But monitoring may be unnecessary for lower-risk back operations, like spinal fusion.
It is odd that neuromonitoring is charged as a separate service, rather than part of the spine surgery. Cardiac monitoring is not charged separately during bypass surgery, for example.
When considering spine surgery, ask your doctor whether neuromonitoring will be part of the procedure. If so, will it be billed separately? Try to find out the name of the provider and get an estimate of the cost beforehand.
Check with your insurer to determine if the neuromonitoring provider is within your network and to make sure the estimated charge would be covered.
Bill of the Month is a crowdsourced investigation by Kaiser Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!
In April 2018, 9-year-old Christian Bolling was hiking with his parents and sister in Virginia's Blue Ridge Mountains, near their home in Roanoke. While climbing some boulders, he lost his footing and fell down a rocky 20-foot drop, fracturing both bones in his lower left leg, his wrist, both sides of his nose and his skull.
A rescue squad carried him out of the woods, and a helicopter flew him to a pediatric hospital trauma unit in Roanoke.
Most of Christian's care was covered by his parents' insurance. But one bill stood out. Med-Trans, the air ambulance company, was not part of the family's health plan network and billed $36,000 for the 34-mile trip from the mountain to the hospital. It was greater than the cost of his two-day hospitalization, scans and cast combined.
"When you're in that moment, you're only thinking about the life of your child," said Christian's mother, Cynthia Bolling, an occupational therapist. "I know that I am being taken advantage of. It's just wrong."
The rising number of complaints about surprise medical bills is spurring efforts on Capitol Hill and at the White House to help consumers. Over and over again, the high cost associated with air ambulance service gives patients the biggest sticker shock — the subject has come up at nearly every Capitol Hill hearing and press conference on surprise medical bills.
Yet air ambulance costs are not addressed in any of the proposals introduced or circulating in Congress. Even a congressional decision last year to set up a panel that would study air ambulance billing hasn't gotten off the ground.
"We're doing a disservice to patients if we protect them from hospital bills but bankrupt them on the way there," said James Gelfand, senior vice president for health policy for the ERISA Industry Committee, known as ERIC, a trade association for large employers.
The issue came up again Wednesday at a House Energy and Commerce subcommittee hearing where Rick Sherlock, president and CEO of the Association of Air Medical Services, the industry group for air ambulances, was among eight witnesses.
Rep. Ben Ray Luján (D-N.M.) sharply questioned Sherlock why costs for air ambulance services have risen by 300 percent in his state since 2006.
"I'm trying to get my hands around why this is costing so much and why so many of my constituents are being hit by surprise bills," Luján said.
Sherlock said that reimbursements from Medicare and Medicaid do not cover the cost of providing services, so charges to private patients must make up that difference.
Air ambulances serve more than 550,000 patients a year, according to industry data, and in many rural areas air ambulances are the only speedy way to get patients to trauma centers and burn units. As more than 100 rural hospitals have closed around the country since 2010, the need has increased for air services.
More than 80 million people can get to a Level 1 or 2 trauma center within an hour only if they're flown by helicopter, according to Sherlock.
The service, though, comes at a cost. According to a recent report from the Government Accountability Office, two-thirds of the more than 34,000 air ambulance transports examined were not in the patients' insurance networks. That can leave patients on the hook for the charges their insurers don't cover, a practice known as "balance billing."
In 2017, GAO found that the median price charged nationally by air ambulance providers was around $36,400 for helicopter rides and even higher for other aircraft. The total generally includes the costs for both the transportation and the medical care aboard the aircraft.
Additionally, the ongoing "Bill of the Month" investigativeseries by Kaiser Health News and NPR has received more than a dozen such bills, ranging from $28,000 to $97,000.
Cynthia Bolling said her insurance company paid about a third of Christian's air ambulance bill and the family settled this week with Med Trans by agreeing to pay $4,400 out-of-pocket.
Reid Vogel, director of marketing and communications for Med Trans, said the company cannot talk about a private patient because of privacy rules. But he added that the company works with patients to find "equitable solutions" when their bills are not covered by insurance.
Since nearly three-quarters of flights are for patients insured by low-paying Medicare, Tricare and Medicaid, he said, "providers must shift costs to insured patients."
Private insurers usually will pay only an amount close to what Medicare reimburses, which is around $6,500. That gives air ambulance companies an incentive to remain out-of-network, according to a 2017 GAO report.
"A representative from a large independent provider noted that being out of network with insurance is advantageous to the provider because a patient receiving a balance bill will ask for a higher payment from the insurance company, which often results in higher payment to the air ambulance provider than having a pre-negotiated payment rate with the insurer," the GAO said.
In an interview, Sherlock, of the trade association, disputed the report's findings, saying his members are actively trying to be in-network in more places, although he couldn't provide any specific numbers.
"I think that everywhere they can, they're incentivized to be in-network," he said.
States are hampered in their efforts to ease the strain for residents.
The Airline Deregulation Act of 1978, which was intended to encourage more competition, forbids states to regulate prices for any air carrier, which applies to air ambulances. What's more, many large employers' health insurance is not governed by states but regulated by the federal labor law, known as ERISA.
So a remedy likely has to come from Congress. And it's proven to be a heavy lift.
For example, the committees that deal with regulation of the air industry — the Commerce Committee in the Senate and the Transportation Committee in the House — don't make health policy or regulate health insurance.
Last year, some lawmakers sought to let states regulate air ambulances with a provision in the bill reauthorizing the Federal Aviation Administration.
But that measure was ultimately eliminated. Instead, the bill called for the creation of an advisory committee to study air ambulance prices and surprise bills.
"The air ambulance lobby did a very good job playing defense during FAA authorization," said ERIC's Gelfand.
The panel, which was supposed to be formed within 60 days of the law's enactment date — Oct. 5 — still has not been created.
Representatives from the air ambulance industry don't think congressional action is necessary, although they are calling for higher reimbursements from Medicare.
Chris Eastlee, vice president for government relations for the Association of Air Medical Services, said his group does not favor more congressional regulation of prices but would support mandatory disclosure of costs to the secretary of Health and Human Services. The organization argues that greater transparency will help companies negotiate more in-network contracts.
A fix for surprise bills supported by some researchers and advocates would require every provider within a medical facility to accept any insurance plan that contracts with that hospital. It might also help bring down air ambulance bills, said Loren Adler, associate director of USC-Brookings Schaeffer Initiative for Health Policy.
It would avoid the situation where someone picks an in-network hospital only to find out that a surgeon or anesthesiologist at that hospital doesn't take their insurance. Air transport should also be included in the rule, he said.
"It's the exact same situation as with the out-of-network emergency facility rates," Adler said. "The same solutions should apply."
Gelfand suggested also that the House Ways and Means Committee mandate that air ambulance companies seeking to participate in Medicare must charge in-network rates.
That would require only a small tweak of the legislative language, as he sees it. "Every proposal that includes something to address surprise bills for emergency care, all you have to do is add in the words 'air ambulances,'" Gelfand said.
Right now, the closest any surprise billing proposal has come to addressing air ambulances is a draft legislative plan on medical costs from Sen. Lamar Alexander (R-Tenn.) and Sen. Patty Murray (D-Wash.). They would require bills for air ambulance trips to be itemized to show both medical charges and the transportation charges so patients and health plans can understand them better.
The man was out of his wheelchair and lay flat on his back just off San Francisco's Market Street, waiting for the hypodermic needle to pierce his skin and that familiar euphoric feeling to wash over him.
The old-timer, who appeared to be in his 60s, could not find a viable vein, so a 38-year-old man named Daniel Hogan helped him. Hogan, a longtime drug user originally from St. Louis, leaned over the older man, eyeing his neck as he readied a syringe loaded with the powerful synthetic opioid fentanyl.
Hogan called the man a "jellyfish" because most of his veins had collapsed from years of intravenous drug use and he rarely bled when pricked. But the older guy still had his jugular vein, and for Hogan that would work just fine.
Hogan's hands were pink and swollen, bearing scars and scabs from years of daily drug use and the harshness of life on the streets. But those hands were skilled in the art of street phlebotomy. He slid the needle into the man's neck and pushed the plunger.
Hogan, who said he had taken fentanyl every day for the past two months, explained that he'd developed a tolerance for the drug, and the dose he gave himself would kill a less experienced user. So, he gave the older man only a fraction of that amount.
In case it was too much, Hogan was ready with a vial of naloxone, the overdose-reversal drug.
Grim drug scenes like this play out every day on the streets surrounding San Francisco's Civic Center — an area that spans the hard-luck sidewalks of the Tenderloin district and the transitional Mid-Market neighborhood, home to tech titans Twitter and Uber.
The area has become a beachhead for fentanyl, which has killed tens of thousands across the United States and is beginning to make itself felt in California.
The drug, which can shut down breathing in less than a minute, became the leading cause of opioid deaths in the United States in 2016. It is increasingly sought out by drug users, who crave its powerful high.
They feel a measure of security because many of their peers carry naloxone, which can quickly restore their breathing if they overdose.
Data suggests that in San Francisco the users may be reversing as many overdoses as paramedics — or more. In both cases, numbers have risen sharply in recent years.
In 2018, San Francisco paramedics administered naloxone to 1,647 people, up from 980 two years earlier, according to numbers from the city's emergency response system.
That compares with 1,658 naloxone-induced overdose reversals last year by laypeople, most of them drug users, according to self-reported data from the DOPE Project, a Bay Area overdose prevention program run by the publicly funded Harm Reduction Coalition. That's nearly double the 2016 figure.
"People who use drugs are the primary witnesses to overdose," said Eliza Wheeler, the national overdose response strategist for the coalition. "So it would make sense that when they are equipped with naloxone, they are much more likely to reverse an overdose."
The widespread availability of naloxone has radically changed the culture of opioid use on the streets, Hogan said. "In the past, if you OD'd, man, it was like you were really rolling the dice." Now, he said, people take naloxone for granted.
"I feel like as long as there is Narcan around, the opiates can't kill you," said Nick Orlick, 26, referring to one of the brand names for the overdose reversal drug.
As he huddled in the recess of a building along Mission Street, around the corner from high-rise luxury apartments, Orlick explained that he'd been revived with naloxone 15 times in recent years.
Despite fentanyl's growing presence in San Francisco and other parts of California, it has not hit the Golden State nearly as hard as the rest of the country.
In 2017, 28,466 people across the U.S. died from overdoses involving synthetic opioids, which include fentanyl and related compounds, according to data from the Kaiser Family Foundation. California, which represents 12% of the country's population, had 536 of those deaths — fewer than 2% of the total. (Kaiser Health News, which produces California Healthline, is an editorially independent program of the foundation.)
However, use of fentanyl is likely to grow in San Francisco and Los Angeles, as people get accustomed to it and begin to prefer its more intense high, said Ricky Bluthenthal, professor of preventive medicine at the Keck School of Medicine of the University of Southern California, who researches injection drug use.
In California, as in many other states west of the Mississippi, heroin is smuggled in the form of a gooey or hard black tar. This "black tar" heroin, "a well-known garbage drug," is diluted with fillers, which induces some users to seek out the much more powerful effects of fentanyl, said Kristen Marshall, manager of the DOPE Project.
Fentanyl is dangerous not only because it is up to 50 times more potent than heroin, but also because people often take it unknowingly when their dealers mix it in with street drugs such as heroin. However, the black tar is difficult to mix with fentanyl, and that may help protect drug users who might otherwise ingest it unwittingly, experts say.
But even if they overdose on fentanyl, it's not necessarily a death sentence. The widespread practice by community organizations in San Francisco and Los Angeles of distributing naloxone to the drug-using population also helps explain California's lower rate of deaths from fentanyl and other opioids, harm reduction workers and researchers say.
On the streets around San Francisco's Civic Center, homeless drug users gather on sidewalks with their dogs, some huddling under blankets to smoke their white, powdered fentanyl through hollowed-out pens. Others inject it, often ducking into alcoves, alleys or tents for a fleeting moment of privacy amid the bustle of government employees, tourists and tech workers. Some of them overdose in plain sight.
They employ various methods to reduce the overdose risk. Some, like Daniel Hogan, take methamphetamine or smoke crack between injections to keep themselves alert. Another technique is to delay the full dose by pushing the plunger only partway down.
If gathered as a group, they often stagger their fentanyl use so one of them will be physically able to administer naloxone.
One recent May afternoon near Market Street, a thin man in his early 40s who called himself Bud slid a needle into his arm and slowly pushed the plunger down, stopping every so often to gauge the effects of the fentanyl.
"Hey, stop there. Pull it out," said his friend Seth Carus, 55. Bud's eyes were vacant and his mouth drooped — telltale signs the fentanyl had taken hold.
Bud, wearing tight clothing and a blue beret, didn't listen. He pushed the plunger all the way. Five minutes later, the color drained from his face, his eyes opened wide, his jaw locked and his entire body went stiff as he lay on the sidewalk.
Carus, living on the streets and a fentanyl user himself, sprang into action. He prepared a shot of naloxone and told a bystander to call 911.
But before Carus could administer the overdose reversal drug, Bud began to stir. Carus cradled him in his arms as the police arrived, followed quickly by the paramedics, who put Bud in an ambulance.
Carus blamed himself as he bent over and cried. The fentanyl was his, and he had been trying to do Bud a favor by getting him high.
A while later, Bud emerged from the ambulance and embraced his friend. "You did the right thing, man," he told Carus. "I did the shitty drug addict thing. You said to stop, and I didn't listen."
A new Trump administration proposal would change the civil rights rules dictating whether providers must care for patients who are transgender or have had an abortion. Supporters of the approach say it protects the freedom of conscience, but opponents say it encourages discrimination.
The sweeping proposal has implications for all Americans, though, because the Department of Health and Human Services seeks to change how far civil rights protections extend and how those protections are enforced.
Roger Severino, the director of the HHS Office for Civil Rights, has been candid about his intentions to overturn an Obama-era rule that prohibited discrimination based on gender identity and termination of a pregnancy. In 2016, while at the conservative Heritage Foundation, he co-authored a paper arguing the restrictions threaten the independence of physicians to follow their religious or moral beliefs.
His office unveiled the proposed rule on May 24, when many people were focused on the start of the long Memorial Day holiday weekend.
The rule is the latest Trump administration proposal to strip protections for transgender Americans, coming the same week another directivewas proposed by the Department of Housing and Urban Development that would allow homeless shelters to turn away people based on their gender identity.
The public was given 60 days to comment on the HHS proposal. Here's a rundown of what you need to know about it.
What would this proposal do?
Fundamentally, the proposed rule would overturn a previous rule that forbids healthcare providers who receive federal funding from discriminating against patients on the basis of their gender identity or whether they have terminated a pregnancy.
The Trump administration proposal would eliminate those protections, enabling providers to deny these groups care or insurance coverage without having to pay a fine or suffer other federal consequences.
That may mean refusing a transgender patient mental healthcare or gender-confirming surgery. But it may also mean denying patients care that has nothing to do with gender identity, such as a regular office visit for a bad cold or ongoing treatment for chronic conditions like diabetes.
"What it does, from a very practical point of view, is that it empowers bad actors to be bad actors," Mara Keisling, executive director of the National Center for Transgender Equality, told reporters.
The proposal would also eliminate protections based on sexual orientation and gender identity from several other healthcare regulations, like non-discrimination guidelines for the healthcare insurance marketplaces.
Does it affect only LGBTQ people?
The proposal goes beyond removing protections for the LGBTQ community and those who have had an abortion.
It appears to weaken other protections, such as those based on race or age, by limiting who must abide by the rules. The Trump proposal would scrap the Obama-era rule's broad definition of which providers can be punished by federal health officials for discrimination, a complicated change critics have said could ease requirements for insurance companies, for instance, as well as the agency itself.
And the proposal erases many of the enforcement procedures outlined in the earlier rule, including its explicit ban on intimidation or retaliation. It also delegates to Severino, as the office's director, full enforcement authority when it comes to things like opening investigations into complaints lodged under the non-discrimination rule.
Why did HHS decide to change the rule?
The Obama and Trump administrations have different opinions about whether a healthcare provider should be able to refuse service to patients because they are transgender or have had an abortion.
It all goes back to a section in the Affordable Care Act barring discrimination on the basis of race, color, national origin, age, disability or sex. President Barack Obama's health officials said it is discrimination to treat someone differently based on gender identity or stereotypes.
It was the first time Americans who are transgender were protected from discrimination in healthcare.
But President Donald Trump's health officials said that definition of sex discrimination misinterprets civil rights laws, particularly a religious freedom law used to shield providers who object to performing certain procedures, such as abortions, or treating certain patients because they conflict with their religious convictions.
"When Congress prohibited sex discrimination, it did so according to the plain meaning of the term, and we are making our regulations conform," Severino said in a statement. "The American people want vigorous protection of civil rights and faithfulness to the text of the laws passed by their representatives."
Much of what the Office for Civil Rights has done under Severino's leadership is to emphasize and strengthen so-called conscience protections for healthcare providers, many of which existed well before Trump was sworn in. Last year, Severino unveiled a Conscience and Religious Freedom Division, and his office recently finalized another rule detailing those protections and their enforcement.
The office also said the proposed rule would save about $3.6 billion over five years. Most of that would come from eliminating requirements for providers to post notices about discrimination, as well as other measures that cater to those with disabilities and limited English proficiency.
The rule would also save providers money that might instead be spent handling grievances from those no longer protected.
The office "considers this a benefit of the rule," said Katie Keith, co-founder of Out2Enroll, an organization that helps the LGBTQ community obtain health insurance. "Organizations will have lower labor costs and lower litigation costs because they will no longer have to process grievances or defend against lawsuits brought by transgender people."
Why does this matter?
Research shows the LGBTQ community faces greater health challenges and higher rates of illness than other groups, making access to equitable treatment in healthcare all the more important.
Discrimination, from the misuse of pronouns to denials of care, is "commonplace" for transgender patients, according to a 2011 report by advocacy groups. The report found that 28% of the 6,450 transgender and gender non-conforming people interviewed said they had experienced verbal harassment in a healthcare setting, while 19% said they had been refused care due to their gender identity.
The report said 28% had postponed seeking medical attention when they were sick or injured because of discrimination.
Critics fear the rule would muddy the waters, giving patients less clarity on what is and is not permissible and how to get help when they have been the victims of discrimination.
Jocelyn Samuels, the Obama administration official who oversaw the implementation of the Obama-era rule, said that for now, even though the Trump administration's HHS will not pursue complaints against those providers, Americans still have the right to challenge this treatment in court. Multiple courts have said the prohibition on sex discrimination includes gender identity.
"The administration should be in the business of expanding access to healthcare and health coverage," Samuels told reporters on a conference call after the rule's release. "And my fear is that this rule does just the opposite."
PORTLAND, Ore. — After nearly 40 years as an internist, Dr. Ron Naito knew what the sky-high results of his blood test meant. And it wasn't good.
But when he turned to his doctors last summer to confirm the dire diagnosis — stage 4 pancreatic cancer — he learned the news in a way no patient should.
The first physician, a specialist Naito had known for 10 years, refused to acknowledge the results of the "off-the-scale" blood test that showed unmistakable signs of advanced cancer. "He simply didn't want to tell me," Naito said.
A second specialist performed a tumor biopsy, and then discussed the results with a medical student outside the open door of the exam room where Naito waited.
"They walk by one time and I can hear [the doctor] say '5 centimeters,'" said Naito. "Then they walk the other way and I can hear him say, 'Very bad.'"
Months later, the shock remained fresh.
"I knew what it was," Naito said last month, his voice thick with emotion. "Once [tumors grow] beyond 3 centimeters, they're big. It's a negative sign."
The botched delivery of his grim diagnosis left Naito determined to share one final lesson with future physicians: Be careful how you tell patients they're dying.
Since August, when he calculated he had six months to live, Naito has mentored medical students at Oregon Health & Science University and spoken publicly about the need for doctors to improve the way they break bad news.
"Historically, it's something we've never been taught," said Naito, thin and bald from the effects of repeated rounds of chemotherapy. "Everyone feels uncomfortable doing it. It's a very difficult thing."
Robust research shows that doctors are notoriously bad at delivering life-altering news, said Dr. Anthony Back, an oncologist and palliative care expert at the University of Washington in Seattle, who wasn't surprised that Naito's diagnosis was poorly handled.
"Dr. Naito was given the news in the way that many people receive it," said Back, who is a co-founder of VitalTalk, one of several organizations that teach doctors to improve their communication skills. "If the system doesn't work for him, who's it going to work for?"
Up to three-quarters of all patients with serious illness receive news in what researchers call a "suboptimal way," Back estimated.
"'Suboptimal' is the term that is least offensive to practicing doctors," he added.
The poor delivery of Naito's diagnosis reflects common practice in a country where Back estimates that more than 200,000 doctors and other providers could benefit from communication training.
Too often, doctors avoid such conversations entirely, or they speak to patients using medical jargon. They frequently fail to notice that patients aren't following the conversation or that they're too overwhelmed with emotion to absorb the information, Back noted in a recent article.
"[Doctors] come in and say, 'It's cancer,' they don't sit down, they tell you from the doorway, and then they turn around and leave," he said.
That's because for many doctors, especially those who treat cancer and other challenging diseases, "death is viewed as a failure," said Dr. Brad Stuart, a palliative care expert and chief medical officer for the Coalition to Transform Advanced Care, or C-TAC. They'll often continue to prescribe treatment, even if it's futile, Stuart said. It's the difference between curing a disease and healing a person physically, emotionally and spiritually, he added.
"Curing is what it's all about and healing has been forgotten," Stuart said.
The result is that dying patients are often ill-informed. A 2016 study found that just 5% of cancer patients accurately understood their prognoses well enough to make informed decisions about their care. Another study found that 80% of patients with metastatic colon cancer thought they could be cured. In reality, chemotherapy can prolong life by weeks or months, and help ease symptoms, but it will not stop the disease.
Without a clear understanding of the disease, a person can't plan for death, Naito said.
"You can't go through your spiritual life, you can't prepare to die," Naito said. "Sure, you have your [legal] will, but there's much more to it than that."
The doctors who treated him had the best intentions, said Naito, who declined to publicly identify them or the clinic where they worked. Reached for verification, clinic officials refused to comment, citing privacy rules.
Indeed, most doctors consider open communication about death vital, research shows. A 2018 telephone survey of physicians found that nearly all thought end-of-life discussions were important — but fewer than a third said they had been trained to have them.
Back, who has been urging better medical communication for two decades, said there's evidence that skills can be taught — and that doctors can improve. Many doctors bridle at any criticism of their bedside manner, viewing it as something akin to "character assassination," Back said.
"But these are skills, doctors can acquire them, you can measure what they acquire," he said.
It's a little like learning to play basketball, he added. You do layups, you go to practice, you play in games and get feedback — and you get better.
For instance, doctors can learn — and practice — a simple communication model dubbed "Ask-Tell-Ask." They ask the patient about their understanding of their disease or condition; tell him or her in straightforward, simple language about the bad news or treatment options; then ask if the patient understood what was just said.
Naito shared his experience with medical students in an OHSU course called "Living With Life-Threatening Illness," which pairs students with ill and dying patients.
"He was able to talk very openly and quite calmly about his own experience," said Amanda Ashley, associate director of OHSU's Center for Ethics in Healthcare. "He was able to do a lot of teaching about how it might have been different."
Alyssa Hjelvik, 28, a first-year medical student, wound up spending hours more than required with Naito, learning about what it means to be a doctor — and what it means to die. The experience, she said, was "quite profound."
"He impressed upon me that it's so critical to be fully present and genuine," said Hjelvik, who is considering a career as a cancer specialist. "It's something he cultivated over several years in practice."
Naito, who has endured 10 rounds of chemotherapy, recently granted the center$1 million from the foundation formed in his name. He said he hopes that future doctors like Hjelvik — and current colleagues — will use his experience to shape the way they deliver bad news.
"The more people know this, it doesn't have to be something you dread," he said. "I think we should remove that from medicine. It can be a really heartfelt, deep experience to tell someone this, to tell another human being."
Spravato maker Janssen provided the FDA modest evidence that it worked and only in limited trials. It presented no information about the use of Spravato beyond 60 weeks.
This article was first published on Tuesday, June 11, 2019 in Kaiser Health News.
Ketamine is a darling of combat medics and clubgoers, an anesthetic that can quiet your pain without suppressing breathing and a hallucinogenic that can get you high with little risk of a fatal overdose.
For some patients, it also has dwelled in the shadows of conventional medicine as a depression treatment — prescribed by their doctors, but not approved for that purpose by the federal agency responsible for determining which treatments are "safe and effective."
That effectively changed in March, when the Food and Drug Administration approved a ketamine cousin called esketamine, taken as a nasal spray, for patients with intractable depression. With that, the esketamine nasal spray, under the brand name Spravato, was introduced as a miracle drug — announced in press releases, celebrated on the evening news and embraced by major healthcare providers like the Department of Veterans Affairs.
The problem, critics say, is that the drug's manufacturer, Janssen, provided the FDA at best modest evidence it worked and then only in limited trials. It presented no information about the safety of Spravato for long-term use beyond 60 weeks. And three patients who received the drug died by suicide during clinical trials, compared with none in the control group, raising red flags Janssen and the FDA dismissed.
The FDA, under political pressure to rapidly greenlight drugs that treat life-threatening conditions, approved it anyway. And, though Spravato's appearance on the market was greeted with public applause, some deep misgivings were expressed at its day-long review meeting and in the agency's own briefing materials, according to public recordings, documents and interviews with participants, KHN found.
Dr. Jess Fiedorowicz, director of the Mood Disorders Center at the University of Iowa and a member of the FDA advisory committee that reviewed the drug, described its benefit as "almost certainly exaggerated" after hearing the evidence.
Fiedorowicz said he expected at least a split decision by the committee. "And then it went strongly in favor, which surprised me," he said in an interview.
Esketamine's trajectory to approval shows — step by step — how drugmakers can take advantage of shortcuts in the FDA process with the agency's blessing and maneuver through safety and efficacy reviews to bring a lucrative drug to market.
Step 1: In late 2013, Janssen got the FDA to designate esketamine a "breakthrough therapy" because it showed the potential to reverse depression rapidly — a holy grail for suicidal patients, such as those in an emergency room. That potential was based on a two-day study during which 30 patients were given esketamine intravenously.
Step 2: But discussions between regulators and drug manufacturers can affect the amount and quality of evidence required by the agency. In the case of Spravato, they involved questions like, how many drugs must fail before a patient's depression is considered intractable or "treatment-resistant"? And how many successful clinical trials are necessary for FDA approval?
Step 3: Any prior agreements can leave the FDA's expert advisory committees hamstrung in reaching a verdict. Fiedorowicz abstained on Spravato because, though he considered Janssen's study design flawed, the FDA had approved it.
The expert panel cleared the drug according to the evidence that the agency and Janssen had determined was sufficient. Dr. Matthew Rudorfer, an associate director at the National Institute of Mental Health, concluded that the "benefits outweighed the risks." Explaining his "yes" vote, he said: "I think we're all agreeing on the very important, and sometimes life-or-death, risk of inadequately treated depression that factored into my equation."
But others who also voted "yes" were more explicit in their qualms. "I don't think that we really understand what happens when you take this week after week for weeks and months and years," said Steven Meisel, the system director of medication safety for Fairview Health Services based in Minneapolis.
A Nasal Spray Offers A Path To A Patent
Spravato is available only under supervision at a certified facility, like a doctor's office, where patients must be monitored for at least two hours after taking the drug to watch for side effects like dizziness, detachment from reality and increased blood pressure, as well as to reduce the risk of abuse. Patients must take it with an oral antidepressant.
Despite those requirements, Janssen, part of Johnson & Johnson, defended its new offering. "Until the recent FDA approval of Spravato, healthcare providers haven't had any new medication options," Kristina Chang, a Janssen spokeswoman, wrote in an emailed statement.
Esketamine is the first new type of drug approved to treat severe depression in about three decades.
Although ketamine has been used off-label for years to treat depression and post-traumatic stress disorder, drugmakers saw little profit in doing the studies to prove to the FDA that it worked for that purpose. But a nasal spray of esketamine, which is derived from ketamine and (in some studies) more potent, could be patented as a new drug.
Although Spravato costs more than $4,700 for the first month of treatment (not including the cost of monitoring or the oral antidepressant), insurers are more likely to reimburse for Spravato than for ketamine, since the latter is not approved for depression.
Shortly before the committee began voting, a study participant identifying herself only as "Patient 20015525" said: "I am offering real-world proof of efficacy, and that is I am both alive and here today."
The drug did not work "for the majority of people who took it," Meisel, the medication safety expert, said in an interview. "But for a subset of those for whom it did work, it was dramatic."
Concerns About Testing Precedents
Those considerations apparently helped outweigh several scientific red flags that committee members called out at the hearing.
Although the drug had gotten breakthrough status because of its potential for results within 24 hours, the trials were not persuasive enough for the FDA to label it "rapid-acting."
The FDA typically requires that applicants provide at least two clinical trials demonstrating the drug's efficacy, "each convincing on its own." Janssen provided just one successful short-term, double-blind trial of esketamine. Two other trials it ran to test efficacy fell short.
To reach the two-trial threshold, the FDA broke its precedent for psychiatric drugs and allowed the company to count a trial conducted to study a different topic: relapse and remission trends. But, by definition, every patient in the trial had already taken and seen improvement from esketamine.
What's more, that single positive efficacy trial showed just a 4-point improvement in depression symptoms compared with the placebo treatment on a 60-point scale some clinicians use to measure depression severity. Some committee members noted the trial wasn't really blind since participants could recognize they were getting the drug from side effects like a temporary out-of-body sensation.
Finally, the FDA lowered the bar for "treatment-resistant depression." Initially, for inclusion, trial participants would have had to have failed two classes of oral antidepressants.
Less than two years later, the FDA loosened that definition, saying a patient needed only to have taken two different pills, no matter the class.
Forty-nine of the 227 people who participated in Janssen's only successful efficacy trial had failed just one class of oral antidepressants. "They weeded out the true treatment-resistant patients," said Dr. Erick Turner, a former FDA reviewer who serves on the committee but did not attend the meeting.
Six participants died during the studies, three by suicide. Janssen and the FDA dismissed the deaths as unrelated to the drug, noting the low number and lack of a pattern among hundreds of participants. They also pointed out that suicidal behavior is associated with severe depression — even though those who had suicidal ideation with some intent to act in the previous six months, or a history of suicidal behavior in the previous year, were excluded from the studies.
In a recent commentary in the American Journal of Psychiatry, Dr. Alan Schatzberg, a Stanford University researcher who has studied ketamine, suggested there might be a link due to "a protracted withdrawal reaction, as has been reported with opioids," since ketamine appears to interact with the brain's opioid receptors.
Kim Witczak, the committee's consumer representative, found Janssen's conclusion about the suicides unsatisfying. "I just feel like it was kind of a quick brush-over," Witczak said in an interview. She voted against the drug.
Public health departments are redirecting scarce resources to try to control the spread of measles. Their success relies on shoe-leather detective work.
This article was first published on Monday, June 10, 2019 in Kaiser Health News.
On any given day, more than 4,000 people pass through the library at California State University-Los Angeles.
On April 11, one of them had measles. The building has only one entrance, which means that anyone who entered or exited the library within two hours of that person's visit potentially was exposed to one of the most contagious diseases on Earth.
It's the stuff of public health nightmares: Everyone at the library between 11 a.m. and 3 p.m. that day had to be identified, warned and possibly quarantined. Measles is so contagious that up to 90% of people close to an infected person who are not protected by a vaccine or previous case of the disease will become infected. But how could the university figure out who had been in the library during that time frame? And which of those people were vulnerable to infection?
Rooting out answers to such questions is the job of the public health detectives who work at health departments across the country.
In 2000, the United States declared the measles eradicated, thanks to widespread use of vaccines. But the virulent disease is back, with more than 1,000 cases confirmed nationwide this year through June 3 — the greatest number since 1992. For every thousand cases, 1 to 3 people with measles will die, even with the best of care, according to the Centers for Disease Control and Prevention. So public health departments are redirecting scarce resources to try to control the spread.
Using basic techniques in place for over 100 years, public health investigators work to control an outbreak before it balloons. Such investigations have evolved with new technologies but remain among the best defenses against infectious disease outbreaks — and among the great untold costs of an epidemic.
The New York City Department of Health and Mental Hygiene, which has confirmed 566 measles cases since September, has spent more than $2.3 million on related investigations. The Los Angeles County Department of Public Health estimates spending as much as $2,000 to track down each contact of a confirmed patient — and it has made hundreds of such efforts in recent months.
"Public health departments across the country have had their budgets tightened in a sustained fashion over the past 15 years," said Dr. William Schaffner, an infectious-disease specialist at Vanderbilt University. "There are no public health departments that are like firemen playing pinochle and waiting for an outbreak. They have other things to do, and they have to put aside those tasks to deal with an outbreak."
Bottom of Form
At Cal State LA, public health officials visited the library and tried to figure out exactly where the infected student had gone — the photocopy area, for example — to determine who might have been exposed. They worked with the school to identify which library employees were present. They scoured library records to find anyone who had checked out books or logged onto a library computer during the specified time period.
But they realized they were missing others who may have come in to browse, work or eat at a library cafe. So, school officials sent out emails and posted on Facebook, Twitterand Instagramto ask anyone who may have been at the library to come forward.
Working together, Cal State and county health officials came up with a list of 1,094 people who were exposed; all were required to present proof they had been vaccinated or had immunity.
At one point during the investigation, 887 people were under a blanket quarantine order from the Los Angeles County Department of Public Health until they could establish their immunity status.
Public health departments regularly employ this sort of shoe-leather detective work to track and control outbreaks of sexually transmitted diseases and foodborne illnesses like salmonella. But there is a palpable sense of frustration that sets the measles apart: It is easily preventable.
"We shouldn't have to be using these ancient techniques. We should have everybody immunized," said Dr. Alan Melnick, director of public health in Clark County, Wash., which logged 71 measles cases during a two-month outbreak that ended in February. "That's what keeps me up at night. If we stop vaccinating, we can turn the clock back to the Middle Ages."
In the course of Clark County's outbreak, 237 people spent 19,071 hours doing outreach, investigation and monitoring the health of people exposed, at a cost of more than $864,000. They investigated 53 exposure sites, including 15 schools and the arena where the Portland Trail Blazers play just across the state line in Oregon.
All this work meant delays in other programs, including restaurant health inspections and a home-visit program for high-risk pregnant women and infants.
"Just because the measles outbreak is going on, it doesn't mean other communicable diseases are taking a holiday," Melnick said.
There was a time public health officials wouldn't have bothered. Before the late 19th century, officials "were busy trying to control diseases like typhoid, cholera and smallpox," which had much higher death rates than measles, said Graham Mooney, an associate professor at Johns Hopkins University who studies the history of medicine. But as other infectious diseases declined, officials focused more intently on measles.
By the early 20th century, schools began noting which students had already had the measles, and who might be vulnerable. When a child fell ill, he might be sent home with a card to be signed by a physician before he could return. A school medical inspector often would visit the home to make sure the child remained isolated.
During an epidemic involving thousands of cases, officials placed warnings in newspapers and later on the radio, describing likely symptoms and asking parents to keep sick children at home. "Now it's Twitter; before, it would have been The Baltimore Sun or the Chicago Tribune or the L.A. Times. But the actual information may not have changed," said Mooney.
Today, public health departments almost invariably learn of a measles case through a healthcare provider. Measles is a reportable disease, which means that any provider who suspects a case has to warn local health officials. Someone from the department visits the patient to conduct an interview and determine precisely where they might have gone while contagious. For the measles, that's four days before the rash appears, and four days after, for a total of nine days.
The interviews are rigorous. "We have to assess their hangouts, their friends, their hobbies, which grocery store do they go to, do they take Lyft or Uber?" explained L.A. County public health nurse Adarsh Almalvez.
For most people, it's hard to remember everywhere they went days earlier. Some patients are reluctant to share details. Almalvez said she starts by building a rapport, asking them about their favorite foods and where they get their hair cut. She said it's crucial to get the patient's cooperation.
She looks for clues around the house that could tell her who else might be living there. Extra pairs of shoes in the hallway, for example, might indicate other residents. If she's interviewing a woman and finds the toilet seat up, she knows a man likely has been there as well.
The goal is to come away with a list of all possible contacts and locations the patient visited while contagious. The results can read like a bizarrely intimate window into one person's day. L.A. County recentlypublished a patient's itinerary in April; in one enviable day, that patient visited Peet's Coffee, Fratelli Café, TART restaurant, The Grove, the Los Angeles Farmers Market, Whole Foods and the La Brea Tar Pits.
Public health officials visit each site to gather more information. They reach out to ride-sharing services to locate drivers and other passengers who might have been in the same car during the infectious period. At restaurants, employees are easily identified, but customers can be hard to find. Officials don't routinely look at surveillance video or track down people through credit card receipts. Instead, they mainly rely on news releases and social media to spread the word. They also look to schools and businesses to do outreach.
This can be a lot of work, especially for medical clinics where a measles patient initially sought care. During a 2017 outbreak, Children's Minnesota, a hospital system in the Twin Cities, spent $300,000 on their emergency response. Part of that was tracking down everyone in the waiting room within two hours of a measles patient.
Patsy Stinchfield, who directs the Children's Minnesota's infection prevention and control program, has worked on three measles outbreaks, in 1989, 2011 and 2017. She said the work has gotten more efficient because of electronic health records and the state's electronic vaccination registry. With the click of a few buttons, investigators can determine who was in the waiting room with a measles patient, and which people were unvaccinated.
Still, Stinchfield said, measles outbreaks remain a source of great frustration. "If we can get people to use the [measles] vaccine, we won't have to spend all these healthcare dollars, all of this time and energy on follow-up," she said. "And we won't have to have all these miserable, sick children."
In a program called My Life, My Story, volunteer writers seek out vets at the VA hospitals, ask them all about their lives, and write up a thousand-word biography.
This story was first published on Monday, June 10, 2019 in Kaiser Health News.
Bob Hall was recovering from yet another surgery in March 2014 when a volunteer walked into his hospital room. It had been a rocky recovery since his lung transplant three months earlier at the William S. Middleton Memorial Veterans Hospital in Madison, Wis.
The volunteer wasn't there to check on his lungs or breathing. Instead, she asked Hall if he wanted to tell his life story.
Hall served in the Marine Corps during the Vietnam War. After the war, he had a political career as a Massachusetts legislator, and then led professional associations for 30 years.
"I'm anything but a shy guy, and I'm always eager to share details about my life," Hall said, half-jokingly.
Hall, who was 67, spoke to the volunteer for over an hour about everything from his time as a D student in high school ("I tell people I graduated in the top 95% of my class") to his time in the military ("I thought the Marines were the toughest branch and I wanted to stop the communists"). He finished with the health problems that finally landed him in the hospital, and brought him to the present day.
The interview was part of a program called My Life, My Story. Volunteer writers seek out vets at the hospital like Hall, and ask them all about their lives. Then they write up a thousand-word biography, and go over it with the patient, who can add more details or correct any mistakes.
"Of course, being a writer I rewrote the whole thing," Hall confessed with a smile.
When the story is finished, it's attached to the patient's electronic record, where a doctor or nurse working anywhere in the Veterans Affairs medical system can read it.
Today more than 2,000 patients at the Madison VA have shared their life stories.
Project organizers say it could change the way providers interact with patients.
Personalizing Impersonal Medical Records
Clinicians can access a lot of medical data through a patient's electronic medical record, but there's nowhere to learn about a patient's personality or learn about her career, passions or values, said Thor Ringler, who has managed the My Life, My Story project since 2013.
"If you were to try to get a sense of someone's life from that record, it might take you days," Ringler said.
The idea for My Life, My Story came from Dr. Elliot Lee, a medical resident who was doing a training rotation at the Madison VA in 2012. The typical rotation for medical residents lasts only about a year, so Lee wanted to find a way to bring new, young doctors up to speed on the VA patients. He wanted a way for them to absorb not just their health histories, but more personal pieces of knowledge.
"It seemed to make sense that the patient might know a lot about themselves, and could help provide information to the new doctor," Lee said.
Lee and colleagues tried having patients fill out surveys, which were useful but still left the team wanting more. Next, they tried getting patients to write down their life stories themselves, but not many people really wanted to.
Finally, an epiphany: hire a writer to interview patients, and put it all down on paper.
It wasn't hard to find a good candidate: There was a poet in Madison, Thor Ringler, who had just finished his training as a family therapist. He was good at talking to people, and also skilled at condensing big thoughts into concise, meaningful sentences.
"I applied for it," Ringler said. "I was like, 'Well, of course! I was made for that!'"
Under Ringler's guidance, the project has developed a set of training materials to allow other VA hospitals to launch storytelling programs. About 40 VA hospitals around the country are currently interested, according to Ringler.
In California, there's a program at the Fresno VA, and volunteers at the Los Angeles VA are scheduled for training this summer.
Ringler estimates hospitals would need to hire just one writer — working half or full time, depending on the hospital's size — to manage a similar storytelling program. That means the budget could be as low as $23,000 a year.
The program aims to address a perennial patient complaint that Ringler summed up this way: "I don't get to see anybody for very long, and nobody [at the hospital] knows who I am."
In addition to the interest from within the VA system, the idea has spread farther, to hospitals like Brigham and Women's Hospital in Boston and Regions Hospital in St. Paul, Minn.
A 'Gift' To Doctors And Nurses
There is research that suggests when caregivers know their patients better, those patients have improved health outcomes.
One study found that doctors who scored higher on an empathy test have patients with better-controlled blood sugar. Another study found that in patients with a common cold, the cold duration was nearly a full day shorter for those patients who gave their doctor a top rating for empathy.
University of Colorado assistant professor Heather Coats studies the health impact of biographical storytelling. She notes that a 2008 study found striking improvement in care when radiologists were simply provided with a photo of the patients whose scans they were reading.
"They improved the accuracy of their radiology read," Coats said, "meaning less misspelled words, a better report that's more detailed." Current research is investigating whether storytelling might have a similar effect on clinical outcomes.
And, Coats said, the benefits of the kind of storytelling happening at the VA don't just accrue for the patients' benefit.
"I consider it a gift to the nurses and the doctors who are caring for the patient," she said.
A survey of clinicians conducted by the Madison VA backed that up: It showed 85% of clinicians thought reading the biographies of patients produced by Thor Ringler's team of writers was "a good use" of clinical time and also helped them improve patient care.
"It gives you a much better understanding about the entirety of their life and how to help them make a decision," said Dr. Jim Maloney, the surgeon who performed Bob Hall's lung transplant in 2013.
Maloney says knowing more about a patient's life story makes it easier for the doctor to have difficult but necessary conversations with a patient — to learn, for example, how aggressively to respond if a complication occurs.
Maloney says the stories generated by My Life, My Story let the entire transplant team connect quickly with patients and family members, and start conversations about sensitive issues or difficult choices about end-of-life care.
Dr. Tamara Feingold-Link, a second-year medical resident at Brigham and Women's Hospital in Boston, first spotted a My Life, My Story biography when she was on rotation at a Boston-area VA.
When her attending physician asked Feingold-Link to run a meeting with a patient she barely knew — a man who was so sick he could hardly talk — his story became a powerful tool.
"It brought me to tears," she said. "When I met his family, I could connect with them immediately."
"It made his transfer to hospice much smoother for everyone involved," she said.
Now Feingold-Link has started a similar program at Brigham and Women's Hospital.
Beyond Medical Care
Hall has learned the stories can be meaningful to caregivers even when they're not working. During one of his stays at the Madison VA, a nursing aide stopped by for a visit.
"She came in one night and sat down on my bed just to talk to me for a while because she'd read my story," Hall said. "I found out later she wasn't on the clock."
It's been five years since Hall's lung transplant, and he's doing well. He even found a part-time job putting his writing skills to work as part of the My Life, My Story team. In two years, Hall has written 208 capsule biographies of veterans.
This story is part of a partnership that includes Wisconsin Public Radio, NPRand Kaiser Health News.
Laws requiring large group health plans to put mental health benefits on an equal footing with physical health have been partially successful, but more work needs to be done.
This article was first published on Friday, June 7, 2019 in Kaiser Health News.
Amanda Bacon's eating disorder was growing worse. She had lost 60% of her body weight and was consuming about 100 calories a day.
But that wasn't sick enough for her Medicaid managed-care company to cover an inpatient treatment program. She was told in 2017 that she would have to weigh 10 pounds less — putting her at 5-foot-7 and 90 pounds — or be admitted to a psychiatric unit.
"I remember thinking, 'I'm going to die,'" the Las Cruces, N.M., resident recalled recently.
Eventually, Bacon, now 35, switched to a plan that paid for treatment, although she said it was still tedious to get services approved.
Many patients like Bacon struggle to get insurance coverage for their mental health treatment, even though two federal laws were designed to bring parity between mental and physical healthcare coverage. Recent studies and a legal case suggest serious disparities remain.
The 2008 Mental Health Parity and Addiction Equity Act required large group health plans that provide benefits for mental health to put that coverage on an equal footing with physical health. Two years later, the Affordable Care Act required small-group and individual health plans sold on the insurance marketplaces to cover mental health services and do that at levels comparable with medical services. (In 2016, parity rules were applied to Medicaid managed-care plans, which cover the majority of people in that federal-state health program for low-income residents.)
The laws have been partially successful. Insurers can no longer write policies that charge higher copays and deductibles for mental healthcare, nor can they set annual or lifetime limits on how much they will pay for it. But patient advocates say insurance companies still interpret mental health claims more stringently.
"Insurance companies can easily circumvent mental health parity mandates by imposing restrictive standards of medical necessity," said Meiram Bendat, a lawyer leading a class-action lawsuit against a mental health subsidiary of UnitedHealthcare.
UnitedHealthcare works to "ensure our products meet the needs of our members and comply with state and federal law," said spokeswoman Tracey Lempner.
Several studies, though, have found evidence of disparities in insurers' decisions.
In February, researchers at the Congressional Budget Office reported that private insurance companies are paying 13% to 14% less for mental healthcare than Medicare does.
The insurance industry's own data shows a growing gap between coverage of mental and physical care in hospitals and skilled nursing facilities. For the five years ending in 2017, out-of-pocket spending on inpatient mental healthcare grew nearly 13 times faster than all inpatient care, according to inpatient data reported in February by theHealthcare Cost Institute, a research group funded by the insurance companies Aetna, Humana, UnitedHealthcare and Kaiser Permanente. (Kaiser Health News is not affiliated with Kaiser Permanente.)
And a 2017 report by the actuarial firm Milliman found that an office visit with a therapist is five times as likely to be out-of-network, and thus more expensive, than a primary care appointment.
Amanda Bacon, who is still receiving care for her eating disorder, remembers fearing that she wouldn't get treatment. She was at one point rushed to an emergency room for care, but after several days she was sent home, no closer to getting well.
Today, because of her disability, Bacon's primary insurance is through Medicare, which has paid for treatment that her earlier Medicaid provider, Molina Healthcare, refused. She has been treated in four inpatient programs in the past two years — twice through Presbyterian Centennial Care, a Medicaid plan she switched to after Molina, and twice though her current Medicare plan. Bacon is also enrolled in a state-run Medicaid plan.
Molina said it could not comment on Bacon's case. "Molina complies with mental health parity laws," said spokeswoman Danielle Smith, and it "applies industry-recognized medical necessity criteria in any medical determinations affecting mental health."
The 'Wrong Criteria'
Dr. Eric Plakun, CEO of the Austen Riggs Center, a psychiatric hospital and residential program in Massachusetts, said that often insurers are "using the wrong criteria" for what makes something medically necessary. They pay enough to stabilize a patient's condition, he said, but not enough to improve their underlying illness. Plakun was one of the experts who testified in the case before Judge Spero in California.
Insurers say they recognize the importance of mental healthcare coverage and that they are complying with the law.
Cathryn Donaldson, a spokeswoman for the trade group America's Health Insurance Plans, said that the industry supports parity but that it is also harder to prove when mental health treatment is needed.
Compared with medical and surgical care, the data and standards to measure mental healthcare "trail far behind." She cited a 2016 study of Minnesota hospitals, where nearly one-fifth of the time patients spent in psychiatric units occurred after they were stabilized and ready to be discharged.
"Just like doctors use scientific evidence to determine the safest, most effective treatments," insurers do the same to cover treatment "consistent with guidelines showing when and where it's effective for patients," Donaldson said.
Health plans commonly apply several controls for mental healthcare. The techniques are legal — unless they are applied more strictly for mental healthcare than medical care.
They often require patients to try cheaper options first, a strategy called "fail first." Patients referred by their doctors to a residential program for opioid addiction, for example, might be denied by their insurers until they try, and fail, to improve at a less expensive part-time program.
Hiring doctors, nurses and pharmacists to review claims is another technique.
Dr. Frederick Villars, who reviews mental health claims for Aetna, remembers arguing with insurers to approve treatment when he was a practicing psychiatrist. His team decides what to cover based on clinical standards, he said, and providers upset about a coverage decision "are well aware of what these guidelines are."
"It's not a pleasant process," he said, "but it's the only tool that exists in this setting to try to keep costs under control."
As health costs continue to grow, straining employer budgets and slowing wage growth, the business community is beginning to take the option more seriously.
This article was first published on Friday, June 7, 2019 in Kaiser Health News.
EASTON, Pa. — Walk into a big-box retailer such as Walmart or Michaels and you're likely to see MCS Industries' picture frames, decorative mirrors or kitschy wall décor.
Adjacent to a dairy farm a few miles west of downtown Easton, MCS is the nation's largest maker of such household products. But MCS doesn't actually make anything here anymore. It has moved its manufacturing operations to Mexico and China, with the last manufacturing jobs departing this city along the Delaware River in 2005. MCS now has about 175 U.S. employees and 600 people overseas.
"We were going to lose the business because we were no longer competitive," CEO Richard Master explained. And one of the biggest impediments to keeping labor costs in line, he said, has been the increasing expense of health coverage in the United States.
Today, he's at the vanguard of a small but growing group of business executives who are lining up to support a "Medicare for All" national health program. He argues not that healthcare is a human right, but that covering everyone with a government plan and decoupling healthcare coverage from the workplace would benefit entrepreneurship.
In February, Master stood with Rep. Pramila Jayapal (D-Wash.) outside the Capitol after she introduced her Medicare for All bill. "This bill removes an albatross from the neck of American business, puts more money in consumer products and will boost our economy," he said.
As health costs continue to grow, straining employer budgets and slowing wage growth, others in the business community are beginning to take the option more seriously.
While the influential U.S. Chamber of Commerce and other large business lobbying groups strongly oppose increased government involvement in healthcare, the resolve of many in the business community — especially among smaller firms — may be shifting.
"There is growing momentum among employers supporting single-payer," said Dan Geiger, co-director of the Business Alliance for a Healthy California, which has sought to generate business support for a universal healthcare program in California. About 300 mostly small employers have signed on.
"Businesses are really angry about the system, and there is a lot of frustration with its rising costs and dysfunction," he said.
Geiger acknowledged the effort still lacks support from any Fortune 500 company CEOs. He said large businesses are hesitant to get involved in this political debate and many don't want to lose the ability to attract workers with generous health benefits. "There is also a lingering distrust of the government, and they think they can offer coverage better than the government," he said.
In addition, some in the business community are hesitant to sign on to Medicare for All with many details missing, such as how much it would increase taxes, said Ellen Kelsay, chief strategy officer for the National Business Group on Health, a leading business group focused on health benefits.
Democrats Propel the Debate
For decades, a government-run health plan was considered too radical an idea for serious consideration. But Medicare for All has been garnering more political support in recent months, especially after a progressive wave helped Democrats take control of the House this year. Several 2020 Democratic presidential candidates, including Sens. Bernie Sanders and Elizabeth Warren, strongly back it.
The labor unions and consumer groups that have long endorsed a single-payer health system hope that the embrace of it by employers such as Master marks another turning point for the movement.
Supporters of the concept say the health system overall would see savings from a coordinated effort to bring down prices and the elimination of many administrative costs or insurance company profits.
"It's critical for our success to engage employers, particularly because our current system is hurting employers almost as much as it is patients," said Melinda St. Louis, campaign director of Medicare for All at Public Citizen, a consumer-rights group based in Washington.
Master, a former Washington lawyer, worked on Democratic Sen. George McGovern's presidential campaign before returning to Pennsylvania in 1973 to take over his father's company, which made rigid paper boxes. In 1980, he founded MCS, which pioneered the popular front-loading picture frame and steamless fog-free mirrors for bathrooms. The company has grown into a $250 million corporation.
Master frequently travels to Washington and around the country to talk to business leaders as he seeks to build political support for a single-payer health system.
In the past four years, he has produced several documentary videos on the topic. In 2018, he formed the Business Initiative for Health Policy, a nonprofit group of business leaders, economists and health policy experts trying to explain the financial benefits of a single-payer system.
Dan Wolf, CEO of Cape Air, a Hyannis, Mass.-based regional airline that employs 800 people calls himself "a free market guy." But he also supports Medicare for All. He said Master helps turn the political argument over single-payer into a practical one.
"It's about good business sense and about caring for his employees and their well-being," he said, adding that employers should no longer be straddled with the cost and complexity of healthcare.
"It makes no more sense for an airline to understand health policy for the bulk of its workers than for a health facility to have to supply all the air transportation for its employees," he said.
Employers are also an important voice in the debate because 156 million Americans get employer-paid healthcare, making it by far the single-largest form of coverage.
Master said his company has tried various methods to control costs with little success, including high deductibles, narrow networks of providers and wellness plans that emphasize preventive medicine.
Insurers who are supposed to negotiate lower rates from hospitals and doctors have failed, he added, and too many premium dollars go to covering administrative costs. Only by having the federal government set rates can the United States control costs of drugs, hospitals and other health services, he said.
"Insurance companies are not watching the store and don't have incentives to hold down costs in the current system," he said.
Glad The Boss Is Trying To Make A Difference
What's left of MCS in Pennsylvania is a spacious corporate office building housing administrative staff, designers and a giant distribution center piled high with carton boxes from floor to ceiling.
MCS pays an average of $1,260 per month for each employee's healthcare, up from $716 in 2009, the company said. In recent years, the company has reduced out-of-pocket costs for employees by covering most of their deductibles.
Medicare for All would require several new taxes to raise money, but Master said such a plan would mean savings for his company and employees.
MCS employees largely support Master's attempt to fix the health system even if they are not all on board with a Medicare for All approach, according to interviews with several workers in Easton.
"I think it's a good idea," said Faith Wildrick, a shipper at MCS who has worked for the company 26 years. "If the other countries are doing it and it is working for them, why can't it work for us?"
Wildrick said that even with insurance her family struggles with health costs as her husband, Bill, a former MCS employee, deals with liver disease and needs many diagnostic tests and prescription medications. Their annual deductible has swung from $4,000 several years ago to $500 this year as the company has worked to lower employees' out-of-pocket costs.
"I'm really glad someone is fighting for this and trying to make a difference," said Wildrick.
Jessica Ehrhardt, the human resources manager at MCS, said the effort to reduce employees' out-of-pocket health costs means the company must pay higher health costs. That results in less money for salary increases and other benefits, she added.
Asked about Medicare for All, Ehrhardt said, "It's a drastic solution, but something needs to happen."
For too long, Master said, the push for a single-payer health system has been about ideology.
"The movement has been about making healthcare a human right and that we have a right to universal healthcare," he said. "What I am saying is this is prudent for our economy and am trying to make the business and economic case."