The funding dispute is tied to a decision by President Donald Trump to stop paying cost-sharing reduction subsidies. Money that would have paid for subsidies also helps fund the Basic Health Program.
Comprehensive coverage for more than 800,000 low-income people in New York and Minnesota who pay a fraction of the typical cost of a marketplace plan may be in jeopardy after the federal government partially cut funding this year.
The Basic Health Program, in which these consumers are enrolled, was created under the Affordable Care Act to provide another coverage option for people with incomes up to 200 percent of the federal poverty level ($24,280 in 2018) who would otherwise qualify for subsidized marketplace coverage. Only New York and Minnesota have set up such programs.
The funding dispute is tied to a high-profile decision by President Donald Trump to stop paying cost-sharing reduction subsidies, which reduce the deductibles and out-of-pocket costs for people in marketplace plans whose incomes are up to 250 percent of the federal poverty level (about $30,000 for one person). Money that would have paid for cost-sharing reduction subsidies also helps fund the Basic Health Program in New York and Minnesota.
These plans must be as comprehensive and affordable as marketplace plans, but for many they’re significantly cheaper, with monthly premiums of either zero or $20 in New York and up to $80 in Minnesota, along with a very small or no deductible, combined with nominal copayments.
In November, when May Brown lost her job as a produce repacker — breaking 40-pound boxes of fruits and vegetables down into 10-pound boxes for grocery stores — she lost her employer health coverage, too. On the advice of a friend, the 62-year-old signed up for MinnesotaCare this month. Her $50 monthly premium is about half what she was paying for coverage on the job.
Brown, who lives in St. Paul, said she is pretty healthy but having this coverage gives her peace of mind.
“You never know. Life is unpredictable,” she said. “I like to have something.”
Under the Basic Health Program, the federal government is responsible for paying states 95 percent of the amount it would have paid in premium subsidies and cost-sharing reduction payments on the marketplace for these enrollees. In December, the Department of Health and Human Services notified the two states it would withhold the cost-sharing reduction portion of the payments — nearly $300 million in the first quarter of 2018, about a quarter of the total amount expected. Over the course of a year, the amount withheld will exceed $1 billion.
When it cut back on funding of the Basic Health Program, the administration cited its October decision to eliminate cost-sharing reduction payments to insurers.
Last month, the attorneys general of the two states filed suit in U.S. District Court for the Southern District of New York to restore the federal funding.
Noting that New York’s Essential Plan, as it’s called, covers more than 700,000 low-income New Yorkers, Attorney General Eric Schneiderman said in a press release, “I won’t stand by as the federal government continues to renege on its most basic obligations in a transparent attempt to dismantle the Affordable Care Act.”
In their lawsuit, Schneiderman and Minnesota Attorney General Lori Swanson argue that, among other things, the adminstration’s decision to cut off CSR payments is procedurally flawed and violates its obligations under the health law. They want the court to restore the states’ Basic Health Program funding.
Regardless of the lawsuit’s outcome, officials in both states have offered assurances that the program is safe — for now.
In New York, Gov. Andrew Cuomo’s budget included sufficient funds to leave the Basic Health Program intact for this year.
Officials at the Minnesota Department of Human Services said in a statement, “People enrolled in MinnesotaCare should feel confident in their coverage based on current information.”
Under the health law, any state can offer coverage under the Basic Health Program. One possible reason New York and Minnesota adopted the program is because they were already covering many in the target population through Medicaid, and typically sharing the cost equally with the federal government. Under the Basic Health Program, the state’s funding responsibility drops to just 5 percent.
So what happens next year? If federal funding isn’t restored, advocates are concerned that costs may rise and coverage shrink.
“It could trigger major changes to the eligibility structure, the benefits or increases in premiums,” said Maureen O’Connell, president of Health Access MN, which helps people enroll in marketplace coverage.
Elisabeth Benjamin said she’s “really worried” about the program next year if the courts don’t order the federal government to start making payments. Benjamin, the vice president for health initiatives at the Community Service Society of New York, an advocacy group, said there’s a snowball effect as states grapple with the delayed approval of Children’s Health Insurance Program funding for low-income kids amid continued uncertainty over federal funding for community health centers.
“It’s terrifying how much the feds can do, particularly for states like New York that are so reliant on federal funding,” Benjamin said.
Indiana's Medicaid expansion is being closely watched in part because it was spearheaded by then-Gov. Mike Pence, who is now vice president, and his top health consultant, Seema Verma, who now heads the federal Centers for Medicare & Medicaid Services.
Indiana on Friday became the second state to win federal approval to add a work requirement for adult Medicaid recipients who gained coverage under the Affordable Care Act, but a less debated “lockout” provision in its new plan could lead to tens of thousands of enrollees losing coverage.
The federal approval was announced by Health and Human Services Secretary Alex Azar in Indianapolis.
Medicaid participants who fail to submit in a timely manner their paperwork showing they still qualify for the program will be blocked from enrollment for three months, according to the updated rules.
Since November 2015, more than 91,000 enrollees in Indiana were kicked off Medicaid for failing to complete the eligibility redetermination process, according to state records. The process requires applicants to show proof of income and family size, among other things, to see if they still qualify for the coverage. Until now, these enrollees could simply re-apply anytime. Although many of those people likely were no longer eligible, state officials estimate about half of those who failed to comply with its re-enrollment rules were still qualified.
Indiana’s Medicaid expansion began in February 2015, providing coverage to 240,000 people who were previously uninsured, helping drop the state’s uninsured rate from 14 percent in 2013 to 8 percent last year. The HHS approval extends the program, which was expiring this month, through 2020.
The new lockout builds on one already in place in the state for people who failed to pay monthly premiums and had annual incomes above the federal poverty level, or about $12,200 for an individual. They are barred for six months from coverage. During the first two years of the experiment, about 10,000 Indiana Medicaid enrollees were subject to the lockout for failing to pay the premium for two months in a row, according to state data.
In addition, more than 25,000 enrollees were dropped from the program after they failed to make the payments, although half of them found another source of coverage — usually through their jobs.
Another 46,000 were blocked from coverage because they failed to make the initial payment.
“The ‘lockout” is one of the worst policies to hit Medicaid in a long time,” said Joan Alker, executive director of the Georgetown University Center for Children and Families. “Forcing people to remain uninsured for months because they missed a paperwork deadline or missed a premium payment is too high a price to pay. From a health policy perspective it makes no sense because during that period, chronic health conditions such as hypertension or diabetes are just likely to worsen.”
Indiana’s Medicaid expansion is being closely watched in part because it was spearheaded by then-Gov. Mike Pence, who is now vice president, and his top health consultant, Seema Verma, who now heads the federal Centers for Medicare & Medicaid Services.
The expansion, known as Healthy Indiana, enabled non-disabled adults access to Medicaid. It has elicited criticism from patient advocates for complex and onerous rules that require these poor adults to make payments ranging from $1 to $27 per month into health savings accounts or risk losing their vision and dental benefits or even all their coverage, depending on their income level.
Indiana Medicaid officials said they added the newest lockout provision in an effort to prompt enrollees to get their paperwork submitted in time. The state initially requested a six-month lockout.
“Enforcement may encourage better compliance,” the state officials wrote in their waiver application to CMS in July.
The new rule will lead to a 1 percent cut in Medicaid enrollment in the first year, state officials said. It will also lead to a $15 million reduction in Medicaid costs in 2018 and about $32 million in savings in 2019, the state estimated.
The number of Medicaid enrollees losing coverage for failing to comply with redetermining their eligibility has varied dramatically each quarter from a peak of 19,197 from February 2016 to April 2017 to 1,165 from November 2015 to January 2016, state reports show. In the latest state report, 12,470 enrollees lost coverage from August to October 2017.
The Kentucky Medicaid waiver approved by the Trump administration in January included a similar lockout provision for both failing to pay the monthly premiums or providing paperwork on time. Penalties there are six months for both measures. But the provision was overshadowed because of the attention to the first federal approval for a Medicaid work requirement.
Like Kentucky, Indiana’s Medicaid waiver’s work requirements, which mandate adult enrollees to work an average of 20 hours a month, go into effect in 2019. But Indiana’s waiver is more lenient. It exempts people age 60 and over and its work-hour requirements are gradually phased in over 18 months. For example, enrollees need to work only five hours per week until their 10th month on the program.
Most Medicaid adult enrollees do work or go to school or are too sick to work, studies show.
Indiana also has a long list of exemptions and alternatives to employment. This includes attending school or job training, volunteering or caring for a dependent child or disabled parent. Nurses, doctors and physician assistants can give enrollees an exemption due to illness or injury.
Robin Rudowitz, associate director for the Kaiser Family Foundation’s Program on Medicaid and the Uninsured, said it’s difficult to gauge whether work requirements or renewal lockouts will have more of an impact on coverage. She noted both provisions apply to most demonstration beneficiaries. (KHN is an editorially independent program of the foundation).
“Any documentation requirement could lead to increased complexity in terms of states administering the requirements and individuals complying,” she said, adding that it could result “in potentially eligible people falling off of coverage.”
With federal officials seemingly unwilling or unable to come up with legislation to control skyrocketing drug prices, that task is increasingly moving to the states. But so is pharma muscle and money opposing the measures.
It was expected to be a perfunctory statehouse meeting — three lobbyists and a legislator discussing a proposal to educate Louisiana doctors about the price of drugs they prescribe.
The bill seemed like a no-brainer in a country where even decades-old medicines can cost thousands and consumers are urged to make smart choices in buying health care. The legislation simply required pharmaceutical sales reps promoting medicines at doctors’ offices to also reveal a price.
No one expected the industry scrum that materialized.
About 10 pharma lobbyists flooded the room in Baton Rouge’s art deco state Capitol, some of them hired guns — lobbyists who’d never represented drug companies before, remembers Jeff Drozda, an insurance lobbyist at the 2016 meeting.
“The message was: We’re going to bring everything at you against these bills,” he said.
They did. Pharmaceutical Research and Manufacturers of America, the powerful trade group known as PhRMA, donated directly to more lawmakers in Louisiana than in any other state in 2016, a new IRS filing shows. When discussion of the measure reached its peak last year, the industry hired a lobbyist for every two legislators.
PhRMA spent thousands entertaining lawmakers at Baton Rouge venues such as Mike Anderson’s Seafood, specializing in shrimp-and-crab gumbo, and the Mestizo Restaurant, home of the Daredevil Margarita, lobbying records show.
“I’ve been in the legislature 10 years. I’ve never in my life seen that kind of effort,” said Kirk Talbot, a Republican who sponsored the bill in the Louisiana House.
With federal officials seemingly unwilling or unable to come up with legislation to control skyrocketing drug prices, that task is increasingly moving to the states. But so is pharma muscle and money opposing the measures, regulatory disclosures and corporate filings from the last two years show.
Meanwhile, activists who backed a 2017 law enabling Maryland officials to challenge “unconscionable” price increases for generic drugs now advocate price regulation for all expensive pharmaceuticals. Policymakers in New Mexico, Massachusetts and Arizona are talking about limiting drug coverage or negotiating drug prices under Medicaid.
In Washington, D.C., PhRMA, is widely credited with stalling federal drug-price measures for years, with lobbying, advertising and political contributions.
Now states are getting a dose of the same medicine.
PhRMA set the stage in 2016 by establishing a group that ultimately spent $110 million to defeat a high-profile California ballot initiative requiring state agencies to pay no more for drugs than does the federal Department of Veterans Affairs. A PhRMA-linked group spent more than $50 million to defeat a similar ballot measure last year in Ohio.
Merck, maker of a hepatitis C drug called Zepatier that costs $54,600 according to Truven Health Analytics, gave $19 million to PhRMA in 2016 but also gave about $500,000 to candidates and political committees in some two dozen states, sometimes in checks as small as $100, according to the CPA data, compiled from voluntary disclosures on corporate websites.
Amgen, maker of leukemia drug Blincyto, which costs $173,000 for an average treatment, according to the company, donated to more than 100 statehouse candidates in about a dozen states for the 2016 elections. Johnson & Johnson, Pfizer, Bristol-Myers Squibb and Allergan also directly or indirectly supported state candidates in 2016, CPA data show.
Pharma companies “definitely have not seen that kind of activity aimed at them at the state level before and have raised their presence to address that,” said Leanne Gassaway, top state lobbyist for America’s Health Insurance Plans, a major insurance trade group.
Few states got as much pharma attention the past two years as Louisiana, though the money spent there fell short of the tens of millions invested in swaying referenda in California and Ohio. It’s cheaper to influence scores of lawmakers than millions of voters.
I’ve been in the legislature 10 years. I’ve never in my life seen that kind of effort.
Drug prices are “something that’s completely out of control,” Talbot said, adding that he gets constituent requests to rein in prescription medicine prices.
Neither Talbot, chairman of the House insurance committee, nor many others in the conservative state are moving to regulate drug prices. But he and other lawmakers saw promise in an idea from Blue Cross and Blue Shield of Louisiana, a big insurer whose premiums have been driven up partly by rising drug expenses.
The proposal, which got little news coverage even in Louisiana, would have required sales reps promoting their latest, greatest medicines to give doctors the wholesale prices at the same time. Physicians, who are largely unaware of prescription costs, might think twice about ordering $500 worth of brand-name pills when a $30 generic could deliver the same benefit, the thinking went.
The measure died in committee after the pharma lobby staged its flash mob at the 2016 meeting. When the idea came up again last spring, this time with backing from Talbot and Sen. Fred Mills, Republican chairman of the Senate health committee, the industry shifted into high gear.
Mills got “a tremendous amount of calls” on his cellphone from pharma lobbyists as well as emails and texts almost immediately after his bill landed on a legislative website, he recalled. First in line was Pete Martinez, PhRMA’s top Louisiana operative.
“I’ve had this volume” of special-interest pressure “but not the speed,” said Mills, a small-pharmacy owner from St. Martin Parish who said he sees the rising price of pills firsthand. Mills recalled phone calls from “top government affairs people” at Pfizer, “telling me the problems with this bill.”
No fewer than 84 lobbyists representing pill companies blanketed Baton Rouge at the height of the legislative session last year, state records show — the most in at least nine years.
In 2016, PhRMA gave directly to about 80 Louisiana state politicians, more than those in any other state, the IRS filing shows. PhRMA and individual drug companies have made more than $600,000 in contributions to Louisiana state and local political races in the past three years, according to campaign finance files.
Martinez did not respond to requests for an interview. At hearings in Louisiana, PhRMA argued that informing doctors of wholesale drug prices is irrelevant to patients. What matters is consumers’ out-of-pocket payment, not the rest of the cost that’s often picked up by insurance, they said.
“We are committed to engaging with lawmakers, patients and others to find solutions that actually help patients,” a PhRMA spokesman said in a statement for this article.
Proponents countered that rising total drug costs are an increasingly painful burden on taxpayers, employers, workers and everybody else who pays them indirectly through insurance plans and government programs.
PhRMA’s opposition had an effect.
Instead of making salespeople disclose prices, the legislation that lawmakers eventually passed and that Gov. John Bel Edwards signed in June requires the Louisiana Board of Pharmacy to host a website listing the information. Rather than ordering drug reps to tell doctors about the site, the act says they “may” give prescribers the internet address if they choose.
The law “is quite watered-down and basically meaningless,” said Ameet Sarpatwari, an epidemiologist and lawyer at Harvard Medical School who follows pharma laws.
Talbot says he may have lost this battle but will continue the war.
“I’m going to take another stab at it” this year, he said. “We’re on the front wave of this thing. All the states are jumping on this bandwagon.”
Will the Trump administration push back to compel Idaho to follow the ACA or offer a green light that could prompt other states to take even more sweeping action?
For the past year, the Trump administration and Republicans in Congress have led a charge to roll back the Affordable Care Act, signaling an openness to state changes.
Now, Idaho has jumped in, saying it will allow insurers to ignore some ACA rules on plans not sold on the marketplace, aiming to make these state-based plans less costly. Several of the changes are viewed by the law’s supporters as hits to its core consumer protections.
Critics decried the move, saying Idaho can’t unilaterally decide not to follow federal law, including some of the ACA’s protections for preexisting conditions and its limits on how much more insurers can charge older or sick people.
Idaho’s approach has national implications because of a key underlying question: Will the administration push back to compel Idaho to follow the ACA or offer a green light that could prompt other states to take even more sweeping action?
Idaho argues its aim is to bring people back into the market, particularly the young, the healthy and those who can’t afford an ACA plan.
“That’s our goal,” said Dean Cameron, director of the state’s Department of Insurance. “Our goal is not to take away from the ACA, but to add to it or complement it.” For instance, insurers could veer from the ACA rules in creating the new plans, so long as they offer other ACA-compliant policies.
Premiums for marketplace policies have risen sharply amid continuing GOP efforts to undermine the ACA. Middle-income Americans who don’t get subsidies are struggling to afford coverage.
“States are trying to figure out what they can do,” said Ed Haislmaier, a senior research fellow at the conservative Heritage Foundation. “How do you provide them with cheaper insurance?”
Idaho says the answer is to skip some of the ACA rules.
Here is a quick look at some of the questions the announcement raises:
1. Can Idaho do this?
Many experts say no. Nicholas Bagley, a law professor at the University of Michigan and former attorney with the civil division of the U.S. Department of Justice, tweeted early Thursday that the move was “crazypants illegal.”
In a follow-up call, he explained that the ACA created rules that — among other things — prevent insurers from discriminating against people based on their health or excluding coverage for those conditions.
“I’m completely flummoxed,” he said. “Idaho appears to be claiming they do not have to adhere to federal law.”
But Idaho officials believe there’s precedent for what they are doing, pointing to actions taken by President Barack Obama when he promised people that if they liked their health plans, they could keep them. Obama issued an executive order directing his agencies to allow the continuance of some plans purchased before the marketplaces opened— even though they fell short of ACA rules, Cameron noted.
Additionally, Cameron pointed to state laws that allow insurers to sell short-term policies that don’t meet all the ACA rules.
“We have tried to do everything we can to adhere to and follow the requirements,” said Cameron, who added that the state consulted with administration officials as it developed its plan.
“I recognize we are pushing the envelope a bit,” he said. “We think this is what is needed.”
2. What might happen?
Most experts expect that a lawsuit is likely, perhaps on behalf of someone with a preexisting condition alleging harm because the state-based plans will cost the sick more or limit coverage in other ways.
Secondly, some experts say the argument might include concerns that the state-based plans could pull healthy people out of the ACA market and drive up premiums there.
Cameron expects the effect will be the opposite, helping stabilize those premiums by bringing more healthy people into insurers’ risk pools through the state-based plans. Insurers would have to pool their claims from both ACA and state-based plans.
3. How different are these plans from ACA coverage?
Sabrina Corlette, a research professor at Georgetown University’s Center on Health Insurance Reforms, said they are "in the middle in terms of the consumer protections they provide, but they’re not as good as the ACA."
They’re better than some non-ACA compliant alternatives already on the market, such as limited-benefit plans, which can be really skimpy — paying paltry amounts or nothing at all toward hospital care or drugs, for example.
By contrast, Idaho's directive says the new plans must cover outpatient services, emergency care, hospitalization, mental health and substance abuse treatment, drugs, rehabilitation, lab services and preventive care. Insurers must include maternity coverage in at least one state-based plan.
“Setting aside the question of whether a state can do this, it would not be a radical change,” said Haislmaier at Heritage.
But, unlike ACA plans, the state plans could cap coverage at $1 million annually. They could charge older people up to five times more than younger ones (the ACA limits the ratio to 3-to-1) and sick people could be charged up to 50 percent more for premiums than standard rates. On the flip side, very healthy people could have rates of up to 50 percent below standard rates.
On preexisting conditions — which is among the ACA’s most popular provisions — the Idaho rules would require insurers to accept people with medical problems, but they could exclude coverage for those specific conditions if the person were uninsured within 63 days of the new plan taking effect.
Still, Cameron argues that the rules of the Idaho plan — in practice — would not be much different than what people face now.
Those who fail to sign up during the annual open enrollment period for the ACA then find out they have a health problem have few other options and would have to wait until the next ACA open enrollment, he noted.
Under Idaho’s plan, such consumers could buy a state-based plan and “have coverage on everything else, except for the ‘pre-ex’ [preexisting condition], until the next open enrollment period,” Cameron said.
4. What could happen legally?
At a minimum, states must follow federal law, although they generally can set more stringent standards. Some states, for example, are considering putting in place their own “individual mandate” to replace the ACA tax penalty for those who are uninsured. The tax bill Congress passed in December removes that federal penalty as of 2019.
But states cannot create rules that fall short of federal law. If the state doesn’t enforce federal rules, the ACA grants the federal government authority to step in.
Idaho may be “banking on … the Trump administration [not enforcing] the ACA,” said Bagley.
This could be one of the first tests for new Health and Human Services Secretary Alex Azar.
“If HHS does not go in and enforce the federal floor… then Idaho can do whatever it wants. Any other state can do whatever it wants,” said benefits attorney Christopher Condeluci, who formerly served as the tax and benefits counsel to the Senate Finance Committee.
He noted a parallel with the immigration debate: “If a state says, ‘hey ICE, we are going to resist you’, then the Department of Justice is allowed to come in and say these immigration officers can do what the law says they can do.”
Fallout could hit Trump, who might find himself defending a law he has adamantly opposed.
“If HHS declines to step in to enforce the law, the executive branch headed by the president is responsible for enforcing the law,” Bagley said. “His job is to make sure his agencies enforce federal law.”
5. Insurers have not said if they will offer such plans. What are their liabilities?
The ACA set fines of $100 per day, per enrollee, for violating provisions of the law. Multiplied by thousands of enrollees across several violations, that could quickly add up. The state may allow the plans, but “it’s not clear that a future administration could be prevented from looking back at past violations and imposing pretty significant penalties,” said Georgetown’s Corlette.
For more than 50 years, the program for the poor and sick has been required to ferry certain clients to and from medical appointments. But a few states have sought - and received - waivers to that rule.
EVERETT, Wash. — Unable to walk or talk, barely able to see or hear, 5-year-old Maddie Holt waits in her wheelchair for a ride to the hospital.
The 27-pound girl is dressed in polka-dot pants and a flowered shirt for the trip, plus a red headband with a sparkly bow, two wispy blond ponytails poking out on top.
Her parents can’t drive her. They both have disabling vision problems; and, besides, they can’t afford a car. When Maddie was born in 2012 with the rare and usually fatal genetic condition called Zellweger syndrome, Meagan and Brandon Holt, then in their early 20s, were plunged into a world of overwhelming need — and profound poverty.
“We lost everything when Maddie got sick,” said Meagan Holt, now 27.
Multiple times each month, Maddie sees a team of specialists at Seattle Children’s Hospital who treat her for the condition that has left her nearly blind and deaf, with frequent seizures and life-threatening liver problems.
The only way Maddie can make the trip, more than an hour each way, is through a service provided by Medicaid, the nation’s health insurance program started more than 50 years ago as a safety net for the poor.
Called non-emergency medical transportation, or NEMT, the benefit is as old as Medicaid itself. From its inception, in 1966, Medicaid has been required to transport people to and from such medical services as mental health counseling sessions, substance abuse treatment, dialysis, physical therapy, adult day care and, in Maddie’s case, visits to specialists.
“This is so important,” said Holt. “Now that she’s older and more disabled, it’s crucial.”
More than 1 in 5 Americans — about 74 million people — now rely on Medicaid to pay for their health care. The numbers have grown dramatically since the program expanded in 32 states plus the District of Columbia to cover prescription drugs, health screening for children, breast and cervical cancer treatment and nursing home care.
With a Republican administration vowing to trim Medicaid, Kaiser Health News is examining how the U.S. has evolved into a Medicaid Nation, where millions of Americans rely on the program, directly and indirectly, often unknowingly.
Medicaid’s role in transportation is a telling example. Included in the NEMT coverage are nearly 104 million trips each year at a cost of nearly $3 billion, according to a 2013 estimate, the most recent, by Texas researchers.
Citing runaway costs and a focus on patients taking responsibility for their health, Republicans have vowed to roll back the benefits, cut federal funding and give states more power to eliminate services they consider unaffordable.
Already, states have wide leeway in how to provide and pay for the transportation.
Proponents of limiting NEMT say the strategy will cut escalating costs and more closely mirror private insurance benefits, which typically don’t include transportation.
They also contend that changes will help curb what government investigators in 2016 warned is “a high risk for fraud and abuse” in the program. In recent years, the Centers for Medicare & Medicaid Services (CMS) reported that a Massachusetts NEMT provider was jailed and fined more than $475,000 for billing for rides attributed to dead people. Two ambulance programs in Connecticut paid almost $600,000 to settle claims that they provided transportation for dialysis patients who didn’t have medical needs for ambulance transportation. And the mother of a Medicaid patient who was authorized to transport her child for treatment billed Medicaid for trips that didn’t take place. She was sentenced to 30 days in jail and ordered to pay $21,500.
Last March, Rep. Susan Brooks, an Indiana Republican, introduced a resolution that would have revoked the federal requirement to provide NEMT in an effort to provide states with “flexibility.” That effort stalled.
Another Republican proposal in 2017 would have reversed the Affordable Care Act’s Medicaid expansion and reduced federal funding for the NEMT program. It failed, but other efforts by individual states still stand.
Former Health and Human Services Secretary Tom Price and CMS Administrator Seema Verma encouraged the nation’s governors to consider NEMT waivers, among other actions, in a March letter to them.
“We wish to empower all states to advance the next wave of innovative solutions to Medicaid challenges,” they wrote. The Trump administration has used state waivers to bypass or unravel a number of the Obama administration’s more expansive health policies, and has granted some states’ requests.
At least three states, Iowa, Indiana and Kentucky, have received federal waivers — and extensions —allowing them to cut Medicaid transportation services. Massachusetts has a waiver pending.
Critics of the cuts worry the trend will accelerate, leaving poor and sick patients with no way to get to medical appointments.
“I wouldn’t be surprised to see more of these waivers in the pipeline,” said Joan Alker, executive director of the Georgetown University Center for Children and Families.
Because medical transportation isn’t typically covered by the commercial insurance plans most Americans use, it’s unfamiliar to many people and could be seen as unnecessary, said Eliot Fishman, senior director of health policy for Families USA, a nonprofit, nonpartisan consumer health advocacy group.
Meagan Holt wheels daughter Maddie outside for a ride to Seattle Children’s Hospital on Nov. 21, 2017. Holt doesn’t drive due to serious vision problems and can’t afford a car. (Heidi de Marco/KHN)
Formerly a Medicaid official in the federal government, Fishman called the transportation program “vital” not only for children with severe disabilities, but also for non-elderly, low-income adults.
CMS released results of a 2014 survey of Medicaid users, which found that lack of transportation was the third-greatest barrier to care for adults with disabilities, with 12.2 percent of those patients reporting they couldn’t get a ride to a doctor’s office.
“This is not something to be trifled with lightly,” Fishman said. “We’re talking about a lifesaving aspect of the Medicaid program.”
About 3.6 million Americans miss or delay non-emergency medical care each year because of transportation problems, according to a 2005 study published by the National Academy of Sciences.
That same study analyzed costs for providing NEMT to patients facing 12 common medical conditions and found that providing additional transportation is cost-effective. For four of those conditions — prenatal care, asthma, heart disease and diabetes — medical transportation saved money when the total costs for both transportation and health care were tallied.
Medicaid is required to provide NEMT services using the most appropriate and least costly form of transportation, whether that’s taxis, vans or public transit.
Most states rely on NEMT brokers or managed-care organizations to administer the transportation services. Other states run the service directly, paying providers on a per-ride basis, while some use local ride services and pay independent taxi firms to shuttle patients.
Dr. Molly Fuentes examines the mobility of Maddie Holt’s arms on Nov. 21, 2017. (Heidi de Marco/KHN)
Proponents of revamping NEMT note that disabled children like Maddie and other people with serious disabilities are in little danger of losing services. In Iowa and Indiana, Medicaid transportation remains available to several groups of patients, including those classified as “medically frail,” though the definition of who qualifies can vary widely.
In addition, one managed-care provider, Anthem, continues to transport Indiana Medicaid patients, despite the waiver that was first enacted in 2007.
Still, Medicaid clients like Fallon Kunz, 29, of Mishawaka, Ind., are often stuck. Kunz, who has cerebral palsy, migraine headaches and chronic pain, uses a power wheelchair. When she was a child, she qualified for door-to-door service to medical appointments, she said.
Today, she lives with her father, whose home is outside the route of a Medicaid transit van. Getting to and from medical appointments for her chronic condition is a constant struggle, she said. Taxis are too expensive: $35 each way for a wheelchair-enabled cab.
We’re talking about a lifesaving aspect of the Medicaid program.
“The only way I can get rides to and from my doctor’s appointment is to ride the 2 miles in my wheelchair, despite all kinds of weather, from my home, across the bridge, to the grocery store,” she said. “Right outside the grocery store is the bus stop. I can catch the regular bus there.”
Sometimes, she’s in too much pain or the Indiana weather — warm and humid in the summer, frigid and windy in the winter — is too much to battle and she skips the appointment.
“Today I didn’t go because it was too cold and my legs hurt too much,” she said on a December Tuesday. “I didn’t feel like getting blown off the sidewalk.”
In Maddie Holt’s case, she was shuttled to Seattle Children’s on a rainy Tuesday morning in a medical van driven by Donavan Dunn, a 47-year-old former big-rig trucker. He works for Northwest Transport, one of several regional brokers that manage NEMT services for Washington state.
Dunn said he received special training to transport patients like Maddie, who is loaded onto a motorized platform, wheelchair and all, into the van and then carefully strapped in.
“I have to drive different,” said Dunn. “I have to watch my corners, watch my starts, watch my stops. It’s always in the back of my mind that I have somebody on board that’s fragile.”
Dr. Molly Fuentes examines the mobility of Maddie Holt’s arms. (Heidi de Marco/KHN)
The transportation service can be used only for medical visits to the specialists who treat Maddie’s condition, which is caused by mutations in any one of at least 12 genes. If Meagan Holt needs to pick up prescriptions or get groceries, she leaves Maddie and a second daughter, Olivia, 3, at home with their dad and takes the bus or walks to her destinations.
Caring for a severely disabled child is not the life she expected, Meagan Holt said, but she cherishes time with Maddie, who has learned to communicate through tactile sign language spelled into her hand.
“She knows about 100 words. She knows the alphabet,” Meagan said. “She likes Disney princesses. She loves ‘Frozen.’”
Maddie is one of hundreds of NEMT-eligible children transported to Seattle Children’s each month. Last September, for instance, more than 1,300 clients made more than 3,600 trips at a cost of more than $203,000, according to the Washington Health Care Authority, which oversees the state’s Medicaid program called Apple Health.
The need is so great, in fact, that the hospital created a transportation will-call desk to help organize the comings and goings.
“When we realized how much transportation is a barrier to getting to your appointment, we decided to do something about it,” said Julie Povick, manager of international exchanges and guest services at Seattle Children’s.
“The majority of our patients are in survival mode,” Povick added. “You need a lot of handholding.”
But Verma, the architect of Indiana’s Medicaid overhaul plan, has suggested that too much handholding might be “counterproductive” for patients — and bad for the country.
In a 2016 Health Affairs essay, Verma noted that early analysis of the effects of curtailing NEMT in Indiana showed that more Medicaid patients with access to the program said transportation was a primary reason for missed appointments than did members without access.
“Moreover, 90 percent of [Healthy Indiana Plan] members report having their own transportation or the ability to rely on family and friends for transportation to health care appointments,” she wrote.
But Marsha Simon, a Washington, D.C., health policy consultant who has tracked NEMT for years, said Medicaid is the option of last resort. People who are able to get rides on their own already do.
“If 90 percent can and 10 percent can’t, what about the 10 percent?” Simon said.
It’s a question that haunts Kunz every day.
“I’m a college student, I have a cat,” said Kunz, who is studying psychology online at Southern New Hampshire University. “I’m just a regular human trying to do things, and the inaccessibility in this area is ridiculous.”
More doctors now screen their patients for signs of abuse and more agencies place victims' advocates inside health centers. Education and counseling for people experiencing violence is also more widely available in clinics and hospitals.
Fanny Ortiz, a mother of five who lives just east of downtown Los Angeles, spent nearly a decade married to a man who controlled her and frequently threatened her. Then, she said, his abuse escalated. “He would physically hit me in the face, throw me on the wall,” she recalled.
Ortiz, 43, eventually left the marriage, taking her children with her. A few years later, she learned that the East Los Angeles Women’s Center offered domestic violence services at the Los Angeles County-USC Medical Center, near her home. Now she goes to the hospital campus for weekly therapy sessions, which she said have helped stop her suicidal thoughts.
“I was afraid to talk,” Ortiz said. “Now I am more open to talk about things that I was holding in.”
Nearly 1 in 4 women have experienced serious physical violence at the hands of a partner. They often end up in the emergency room or the doctor’s office. But they don’t typically volunteer the reason for their injuries, and doctors don’t always ask about abuse in the home. That failure of communication means the patients may miss out on the help they need.
Yet a growing number of health providers and anti-abuse agencies in California and around the country are collaborating to identify victims and get them help. More doctors now screen their patients for signs of abuse and more agencies place victims’ advocates inside health centers. Education and counseling for people experiencing violence is also more widely available in clinics and hospitals.
About four years ago, the East Los Angeles Women’s Center opened offices on the campus of L.A. County-USC, a busy public hospital. Since then, center staff members have trained more than 2,500 doctors, nurses, social workers and others to identify victims of domestic violence. They also respond quickly to calls from the medical center’s emergency room, inpatient hospital and outpatient facilities to help patients in crisis.
Today, the women’s center has embarked on an innovative approach: In February, it plans to open a short-term shelter for abuse victims on the medical center grounds. The 10-bed shelter fills a serious need, said Deirdre Anglin, an emergency room physician at L.A. County-USC.
“We sometimes have patients in the emergency department who don’t have a place to go, and in the evenings and nights all the shelters in L.A. will be filled,” Anglin said.
Victims of abuse can suffer long-term health problems, including chronic pain, frequent headaches, depression, diabetes and asthma. And they have higher health costs than people who have not experienced abuse. So “it makes complete sense to have the health care providers acting as allies and partners in treating domestic violence,” said Peter Long, CEO of the Blue Shield of California Foundation. (The foundation provides support for Kaiser Health News coverage in California.)
The foundation has funded 19 partnerships between health centers and domestic violence agencies around the state, including the L.A. County-USC office of the East Los Angeles Women’s Center. Similar partnerships operate in Illinois, Maryland and other states.
Last year, the East Los Angeles Women’s Center served 600 victims of domestic violence at the L.A. County-USC hospital campus. Nearly one-third were homeless or couldn’t go back home for safety reasons.
Advocates say that hospitals and clinics are ideal settings to respond to the needs of abused women.
The East Los Angeles Women’s Center is opening a domestic violence shelter on the Los Angeles County-USC Medical Center campus. The proximity makes it easier for doctors to ask patients about violence, said Rebeca Melendez, director of wellness at the center’s hospital office. “They don’t need to know all the answers,” she says. “They just need to call us.” (Anna Gorman/KHN)
In the San Gabriel Valley, the YWCA sponsors domestic violence support groups at a community clinic, while the clinic offers health education for survivors of abuse at the YWCA. In Sacramento, a Native American health center works closely with a domestic violence group a few blocks away.
Doctors have an “unprecedented opportunity to promote prevention and to respond because they are seeing patients that may not ever reach out to a domestic violence agency or police for help,” said Lisa James, director of health for Futures Without Violence, which runs a national resource center dedicated to improving the response of medical professionals to domestic violence. “They can provide this critical lifesaving intervention.”
The proximity of the East Los Angeles Women’s Center to the hospital and clinic buildings on the L.A. County-USC campus makes it easier for doctors to ask their patients about violence, said Rebeca Melendez, director of programs for the center’s office at the medical center. The medical providers know where to turn for guidance – and that the help is nearby.
“They don’t need to know all the answers,” she said. “They just need to call us.”
This growing collaboration between the medical profession and anti-abuse agencies is driven in part by the Affordable Care Act, which requires that health plans cover domestic violence screening and counseling.
The U.S. Preventive Services Task Force recommends doctors routinely question women about violence in the home and refer them to services if needed. The task force concluded in 2013 that intervention could reduce violence and abuse as well as mental and physical health problems.
Organizations such as the American Congress of Obstetricians and Gynecologists and the American Medical Association also recommend routine screening and counseling for domestic violence.
In the past, patients would go to health centers with such problems, but providers did not feel comfortable asking questions about abuse at home, said Long, of the Blue Shield of California Foundation.
“They didn’t feel they had the time and they didn’t feel they had the resources to do something about it,” he said. Nor did they always have a place to send patients who were abuse victims.
Treating patients who are in abusive relationships is “very challenging,” said Anglin, the ER physician. “There is no pill to give.” But asking about violence needs to be part of a physician’s job, she said.
“Part of what we need to do is try to identify patients who may be in a dangerous situation … so we are not just sending these patients back to the same situation they were in only to come back worse off another time.”
Hampered by political ideology from the White House that has spurred a focus on overhauling Medicaid benefits, for instance, Medicaid's former CMO says CMS is 'ill-equipped' right now to handle the opioid epidemic.
Andrey Ostrovsky’s family did not discuss what killed his uncle. He was young, not quite two weeks past his 45th birthday, when he died, and he had lost touch with loved ones in his final months. Ostrovsky speculated he had committed suicide.
His family knew the uncle’s life had been turbulent for a while before his death, watching as he divorced his wife and became estranged from his 4-year-old daughter and eventually lost his job as a furniture store manager. But Ostrovsky wanted to understand what happened to his uncle, his stepfather’s younger brother. So, last fall when he found himself in southeastern Florida, where his uncle died in 2015, he contacted one of his uncle’s friends for what he thought would be a quick cup of coffee.
Instead the friend “let loose,” revealing that they had been experimenting with a variety of drugs the night his uncle died — the tragic culmination of more than a decade of substance abuse much of his family knew nothing about. An autopsy showed there were opiates and cocaine in his system, Ostrovsky later learned.
The revelation shook Ostrovsky, a pediatrician appointed to the Centers for Medicare & Medicaid Services in 2016. He had championed better drug treatment programs for the 74 million people on Medicaid — an increasingly uphill battle after Republicans signaled they would trim the program under President Donald Trump.
Within his own agency, Ostrovsky already felt that he was something of a pariah. After he’d posted a tweet against a Republican plan to repeal and replace the Affordable Care Act, he was reprimanded and removed from his major projects. A conservative group known as America Rising filed a Freedom of Information Act request for his email correspondence, a move seen as an attempt to intimidate Ostrovsky.
But that revelation over coffee in Florida made the drug crisis deeply personal for Ostrovsky and his family, prompting him to act. He realized that solutions were not just about money, but also about combating stigma, that stain he says prevented his uncle from getting help. So, he quit his government job last month and is speaking publicly about his family’s experience, to remove the shame of drug addiction.
“It’s not what killed him,” Ostrovsky says, referring to the stigma. “But that’s what killed him.”
Last fall, the Trump administration declared the opioid crisis a public health emergency, stopping short of allocating more funding for an “epidemic” that killed more than 42,000 in 2016 — more than any year on record, according to the Centers for Disease Control and Prevention. That declaration was extended last week. Early data indicate 2017 may have outpaced 2016 in drug deaths.
In one of the latest attempts to manage the crisis, Democratic Gov. Tom Wolf of Pennsylvania recently declared the opioid epidemic a statewide disaster emergency. For the first time, Pennsylvania officials will direct emergency resources toward a public health crisis in the same way they would a natural disaster.
The uncle’s story offers an intimate look at a crisis that has vexed officials on the local, state and national level, strained public health resources — and infiltrated not just America’s streets and drug dens, but also workplaces and successful middle-class families like Ostrovsky’s. KHN agreed not to disclose the uncle’s name out of respect for his family’s privacy.
The uncle immigrated to the United States from Azerbaijan when he was 16, seeking a brighter future than the one stretched before him in the crumbling Soviet Union, Ostrovsky recalled. His family settled in Baltimore, where he married and started his own family. When he wasn’t working, he grilled lamb kebabs and danced to music from his home country. He was a warm, welcoming host, insisting guests have at least a cup of tea.
“Even when he had nothing, he would take that last piece of bread and offer it to you,” Ostrovsky says.
Andrey Ostrovsky (Courtesy of Andrey Ostrovsky)
To Ostrovsky, he was the “cool uncle,” always bringing his nephew trinkets from his travels. When Ostrovsky was in seventh grade, his uncle returned from Jamaica with a shirt that read: “See no evil, hear no evil, speak no evil, s— happens mon.” Ostrovsky wore it to school — and happily suffered the inevitable punishment. “I love him for that and was proud to get in trouble,” he wrote in an email.
Sometime around the early 2000s, the uncle and his wife divorced. He began drinking more, a vice Ostrovsky attributed in part to his cultural heritage but that he suspects grew into alcoholism.
It is unclear to the family when, exactly, drugs came into his life, though his problems seem to have escalated in his 30s. His drug of choice was cocaine, Ostrovsky learned from his uncle’s friend, who frequently took drugs with him over the years.
His inability to function at work and other financial strains eventually drove him to crack cocaine, an especially addictive, cheaper form that produces an instant, intense high when smoked. Months before his death, he lost his job and grew depressed. He began using more heavily and trying new drugs. He dabbled in benzodiazepines, a class of psychoactive drugs like Xanax and Valium, and opioids.
Opioids, which broadly include both illegal drugs like heroin and prescription painkillers like OxyContin, are particularly perilous when misused because they suppress the ability to breathe. Those who use opioids also build up a tolerance over time, encouraging them to use more to achieve a high. These facts are especially problematic considering street drugs are often cut with more powerful opioids — such as fentanyl, a fast-acting painkiller — to create a more intense high.
Eventually, Ostrovsky’s uncle began living with his drug dealer. On the night of his death, he and his friend went through the dealer’s stash when he was out, trying pills and other drugs. When the dealer returned, after the friend had left, the uncle didn’t answer the door.
They found him on the couch, looking “at peace,” his friend recounted to Ostrovsky. They tried to resuscitate him and called for help. Sitting on the curb outside, his friend watched the paramedics carry him away.
The friend says he quit using drugs and is enrolled in a methadone program, a treatment option that uses another opioid to reduce withdrawal symptoms.
Hampered by political ideology from the White House that has spurred a focus on overhauling Medicaid benefits, for instance, Ostrovsky says his former agency, CMS, is “ill-equipped” right now to handle this problem. So, for now, he’s working outside the government.
This month, Ostrovsky announced he is joining Concerted Care Group, an addiction treatment program based in Baltimore whose patients are mostly covered by Medicaid, where he will serve as CEO as the organization looks to expand.
Ostrovsky first noticed Concerted Care Group when it was part of a CMS pilot program, a standout because it eschewed the surreptitious-feeling grab-and-go approach of most outpatient addiction centers. “This can’t be a methadone clinic,” Ostrovsky thought when he first heard about it.
It offered patients private spaces to take their medicine; security guards to ensure their safety; even coffee while they wait, preserving at least a modicum of patient dignity. In the same spirit, Ostrovsky hopes that sharing his personal story about his uncle will combat the stigma that makes patients and their loved ones ashamed to reach out for help.
“I think this is really important, that people hear about his story and talk,” he says, “and get over that feeling of not wanting to have that uncomfortable conversation with my family member who needs help.”
Former congressional staffers who now work for drug companies often return to the Hill to lobby former co-workers or employees. This raises concerns that pharmaceutical companies could wield undue influence.
Alex Azar’s job hop from drugmaker Eli Lilly to the Trump administration reflects ever-deepening ties between the pharmaceutical industry and the federal government.
A Kaiser Health News analysis shows that hundreds of people have glided through the “revolving door” that connects the drug industry to Capitol Hill and to the Department of Health and Human Services.
Azar was confirmed Wednesday as HHS secretary, joining other former drug industry alumni in top positions.
Nearly 340 former congressional staffers now work for pharmaceutical companies or their lobbying firms, according to data analyzed by KHN and provided by Legistorm, a nonpartisan congressional research company. On the flip side, the analysis showed, more than a dozen former drug industry employees now have jobs on Capitol Hill — often on committees that handle health care policy.
“Who do they really work for?” said Jock Friedly, Legistorm’s president and founder, who called that quantity “substantial.” “Are they working for the person who is paying their bills at that moment or are they essentially working on behalf of the interests who have funded them in the past and may fund them in the future?”
In many cases, former congressional staffers who now work for drug companies return to the Hill to lobby former co-workers or employees. The deep ties raise concerns that pharmaceutical companies could wield undue influence over drug-related legislation or government policy.
“You’ll take the call because you’ve got a friendly relationship,” said Diana Zuckerman, president of the nonprofit National Center for Health Research and a former congressional staffer. “You’ll take the call because these people are going to help you in your future career [and] get you a job making three times as much.”
A 2012 Sunlight Foundation investigation found that, on average, a chief of staff on the Hill could increase his or her salary 40 percent by moving to the private sector.
Experts say the cozy relationships don’t necessarily mean congressional staffers do favors for lobbyists they know, but the access doesn’t hurt.
When John Stone left the House Energy and Commerce Committee last fall to join lobbying firm BGR, he told Politico that he had consulted with two lobbyists at BGR “for advice on basically everything that came across my desk.”
KHN’s review of Legistorm data indicates that one of the lobbyists, BGR’s Ryan Long, overlapped with Stone on the House panel. Brent Del Monte preceded them both on the committee and then spent 10 years at the Biotechnology Innovation Organization (BIO), a trade group for the biologic drug industry, before joining BGR in 2015. BGR’s clients include PhRMA, Celgene and other pharmaceutical firms.
Like Stone, Long and Del Monte, many ex-Hill staffers working in some way for the pharmaceutical industry came from key committees, including the Senate Committee on Health, Education, Labor and Pensions (HELP) and the House Energy and Commerce Committee, which in 2016 shepherded the 21st Century Cures Act into law. The law faced criticism from watchdogs who feared it would make drug approval cheaper and easier but could lead to unsafe approvals.
Tim LaPira, a James Madison University associate professor who co-authored a book about the revolving door published in June, said the practice of leaving government service to lobby for industry isn’t as corrupt as it seems. Rather, as congressional staffs have shrunk over time, they’ve been forced to essentially outsource expertise to lobbyists, he said.
“Don’t tell the private sector to stop doing it. Tell Congress to stop relying on the private sector so much,” LaPira said, adding that Congress spends just 0.5 percent of the discretionary budget on itself.
The number of congressional employees declined by more than 7,000 people — about 27 percent — from 1979 to 2015, according to data compiled by the Brookings Institution, a nonprofit research group.
While there’s a fear that lobbyists are slipping industry-friendly language into legislation, LaPira explained, more often they’re monitoring what’s happening inside government.
The reverse-revolving door, in which former pharmaceutical employees enter public service, is not as clearly understood. Neither is the flow of serial revolvers, who go from industry to government and back.
Some of those Hill staffers, according to financial disclosures, maintain drug industry pensions and stock, Kaiser Health News found. They are not required to divest and are required to disclose those connections only if they hold key positions.
Reverse revolvers may not realize they’re doing Big Pharma’s bidding, Friedly said, but they’ve been so exposed to the industry’s point of view that their implicit biases may seep into their legislative work.
The revolving door operates beyond the Hill, however, LaPira said
In addition to Azar, several former drug industry officials have landed key jobs in Trump’s Cabinet and administration, including Food and Drug Administration Commissioner Scott Gottlieb, a former venture capitalist with deep ties to the pharmaceutical industry.
Gottlieb disclosed serving on boards of several pharmaceutical companies, including GlaxoSmithKline and Daiichi Sankyo, prior to returning to government for his third trip through the revolving door.
KHN also reviewed the résumés of more than 100 HHS appointees, obtained via a Freedom of Information Act request by American Oversight, a nonprofit founded to hold government officials accountable. Although only a handful of recent appointees were employed directly by drug companies, more than a dozen had worked as lobbyists, consultants and lawyers on behalf of pharmaceutical firms.
The high-level HHS appointees include: Keagan Lenihan, a former lobbyist for drug distributor McKesson who now serves as senior counselor to the secretary at HHS; former PhRMA lobbyist John O’Brien, now deputy assistant secretary of health policy for the agency’s Planning and Evaluation arm; and former Bristol-Myers Squibb lobbyist Mary-Sumpter Lapinski, an attorney in the HHS secretary’s office.
Sen. Elizabeth Warren expressed concerns about the revolving door during Azar’s confirmation hearing before the HELP committee in November. Not long after telling Azar that his “résumé reads like a how-to manual for profiting from government service,” she asked him whether drug industry CEOs should be held accountable when the companies they run break the law. He did not answer yes or no.
His reply: “I’m satisfied with our discussion.”
METHODOLOGY
Kaiser Health News obtained revolving-door and lobbying disclosure data from Legistorm, a for-profit, nonpartisan congressional research firm based in Washington, D.C.
The revolving-door data include congressional staffers’ jobs on and off Capitol Hill. It is current through August 2017 and dates to 2001. For lobbyists who did not directly work for pharmaceutical firms but worked for lobbying firms on behalf of pharmaceutical companies and their trade groups, Kaiser Health News used lobbying disclosure data to identify individuals registered to lobby on behalf of these clients. Reporters then tracked down these lobbyists in Legistorm’s revolving door data and checked them by hand.
The HHS appointee résumés obtained by American Oversight covered individuals appointed from Jan. 20 to July 12, 2017.
An unusual number of calamities plagued America's hospitals in 2017: fires in California; hurricanes in Texas, Florida, and Puerto Rico; the deadliest mass shooting in modern history; and even attacks within hospital walls.
It was 3:35 a.m. and flames from a massive Northern California wildfire licked at the back of a Santa Rosa hospital.
Within three hours, staffers evacuated 122 patients to other facilities — something they’d never come close to doing before. Ambulances sped off with some of the sickest patients; city buses picked up many of the rest.
With phone lines charred and communication restricted, doctors and nurses struggled to figure out who was sent where — forced to keep their wits even as some of their own homes burned and their families fled.
This was not exactly covered in their meticulously executed drills and disaster-preparedness videos.
“You never know how you’ll react until it comes your way … until fate taps you on the shoulder,” said Dr. Josh Weil, an emergency medicine physician at Kaiser Permanente in Santa Rosa who led the hospital evacuation operation on Oct. 9.
America’s hospitals were beset by an unusual number of calamities in 2017: The fires that raged in Northern and Southern California; hurricanes that displaced thousands in Houston, Florida and Puerto Rico; the deadliest mass shooting in modern history that killed 58 people and wounded more than 500 others in Las Vegas; and the attack at a Bronx hospital in which a doctor turned a gun on his former colleagues, killing one and injuring six.
Across the country, natural disasters have become more frequent and more deadly; the carnage from mass shootings resembles that on a battlefield. In some cases, these crises are more severe and elaborate than most hospitals — particularly smaller ones — are prepared for, and experts say it is time to bring facilities up to speed.
“The probability that any individual hospital will be involved in an unusual event is increasing,” said Dr. Carl Schultz, professor emeritus of emergency medicine and public health at the University of California-Irvine. “All hospitals are potentially vulnerable,” he said, and “there is more pressure for hospitals to be prepared.”
That’s the case, he added, even though hospitals often lack the resources and funding to upgrade their disaster plans.
In the new year, hospitals that responded to outsized tragedies in 2017 are reassessing their plans in light of their painful experiences. Below are some instructive examples:
Keeping Track Of Patients
In Northern California, staffers from the Kaiser hospital in Santa Rosa rushed to clear out their wards as the ferocious Tubbs Fire approached. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)
The original plan was to jot down details from each displaced patient’s identification bracelet so that the hospital could later confirm that patients arrived at other hospitals safely. But with the fire coming fast upon them, it became clear this would take too long, Weil said.
On the fly, one staffer suggested taking photos of patient wristbands with smartphones, he said.
“That was a brilliant idea that really saved us,” Weil said.
The hospital is now considering whether smartphones might be of greater use in future emergencies, or if there’s a more efficient way to track patients who must be rapidly whisked away.
Eight days earlier, another tracking issue surfaced at Sunrise Hospital & Medical Center in Las Vegas — this one concerning incoming patients. The facility was suddenly inundated by people shot or otherwise injured during the tragedy at the outdoor country music festival; 212 patients were admitted in a two-hour window, 124 of them with gunshot wounds.
Of those, 92 had no official photo identification on them.
Families dashed desperately from one hospital to another searching for their loved ones, said Alan Keesee, the hospital’s chief operations officer. Without IDs for patients, it was a challenge to confirm whether they were at the hospital, let alone whether they would be OK.
Enterprising staffers listed their unidentified patients’ physical traits and unique features, such as tattoos, to help match people with the descriptions family members provided. In turn, many relatives pulled up social media profile photos of their loved ones to give the hospital something to go by.
The chaotic process of patient identification exposed a desperate need for a centralized data hub where descriptions of unidentified patients in a massive emergency could be uploaded and accessed by all area hospitals, Keesee said.
And indeed, he said, his hospital is working with the Nevada Hospital Association and other local health agencies to determine whether the hub can be created.
Staff members had trained for just this kind of incident. But they had not anticipated how restricted their movements would be once police took over, said Dr. Sridhar Chilimuri, the physician-in-chief that day.
“Shooting victims need blood transfusions, so you need to get from the blood bank to the operating rooms quickly,” Chilimuri said.
But the hospital lockdown blocked access to elevators. Doctors and nurses also had to fetch surgical instruments and move patients, he added, but they couldn’t do so without approval from police.
Because it was an internal shooting, police had to clear staffers of suspicion before they could return to work — even the doctors needed for lifesaving operations.
The hospital has since updated its drills to include an accelerated process of police screening — targeting the medical staff most urgently needed — and its training videos now show an attacker armed with an assault weapon rather than a small handgun.
“Hopefully that will help us cut down on the time we are crippled,” Chilimuri said.
Running Low On Supplies
When Hurricane Irma barreled into South Florida in September, the 10 Tenet Health hospitals in the region felt ready.
They had beefed up their disaster plans after Hurricane Matthew landed a year earlier, said Cathy Philpott, a director of nursing practice and clinical operation for the hospital system. They also brought in staff from other states and rolled in backup generators, she said.
Even so, they faced an unexpected challenge: a shortage of platelets, cells that help the body form clots to stop bleeding.
Until sister hospitals in Boston could airlift platelets in, the hospitals had to work with local blood banks to conserve the supply and prioritize their use for trauma patients. When hurricanes are forecast in the future, the hospitals will reach out to local blood banks and host platelet drives as the storms approach, Philpott said.
In a corner of Jymie Jimerson's house in the town of Sparta, in southwestern Missouri, she has set up a kind of shrine. It has Native American art representing her Cherokee heritage alongside Willie Nelson albums, books and photos in remembrance of her late husband.
There's a copy of Nelson's mid-'70s LP "Red Headed Stranger."
"When Steve was young, he had red hair and a red beard, so he always really identified with Willie's ‘Red Headed Stranger,'" Jimerson said. "I try to keep it up there as a reminder of better days."
Her husband, Steve Jimerson, was sentenced to life in prison in 1996 for his role in the shooting deaths of two men. Jimerson said her husband's life had been ravaged by drug abuse. But after he entered prison, he got off drugs and become a mentor for other inmates.
"Once he got inside, recovery became his life," Jimerson said. "And that was his passion until the day he died."
Steve Jimerson died on Jan. 6, 2017, of complications from hepatitis C, a liver infection that's especially widespread among prison inmates. He was 59.
Civil liberties groups in Missouri and at least seven other states are now suing to get more inmates treated with new-generation hepatitis C drugs that are highly effective but also costly.
After Steve Jimerson was diagnosed with hepatitis C in prison, his widow said, he was on the lookout for news of treatment advances.
In 2013, Gilead Sciences introduced Sovaldi, the first of a new generation of drugs called direct-acting antivirals that can cure hepatitis C and with fewer side effects than the previous treatments. But the excitement was dampened by the drug's price. A full course of treatment carried an $84,000 price tag.
In 2016, around 5,000 inmates in Missouri's prisons had hepatitis C, and no more than 14 of them received the drugs, according to internal state data obtained by the Roderick & Solange MacArthur Justice Center in St. Louis.That's about 15 percent of the 32,000 people incarcerated in Missouri's prisons.
Jimerson said that her husband wasn't given direct-acting antivirals. By the fall of 2016, his health was deteriorating rapidly, and he grew pessimistic about the prospects for a cure.
"He told me that if someone had to die to get the DOC [Department of Corrections] to change their policy, he was OK with it being him," she said.
As recently as 2012, scores of Missouri inmates were being treated with older hepatitis C drugs, including one called interferon that is notorious for its debilitating side effects. But in 2013, the Federal Bureau of Prisons started changing treatment guidelines to replace the old hepatitis C drugs with new ones.
Many states follow those guidelines, including Missouri, according to a spokesperson from Corizon Health, the private company that provides health care for Missouri's inmates.
But the updated guidelines gave prisons more leeway to decide when it's appropriate to provide treatment. And as Missouri phased out the old drugs, it hasn't used the new drugs nearly as often. That has left only a handful of inmates getting any hepatitis C drug treatment at all.
In December 2016, the American Civil Liberties Union and MacArthur Justice Center sued to get the Missouri Department of Corrections to provide direct-acting antiviral drugs to inmates with hepatitis C who qualify for treatment.
ACLU lawyer Tony Rothert said the state's current treatment practices violate the U.S. Constitution's Cruel and Unusual Punishments Clause, part of the Eighth Amendment.
"The Supreme Court has said that in the context of medical care, that means that prisons cannot be deliberately indifferent to serious medical needs," Rothert said. "Hepatitis C fairly easily satisfies this test, because if left untreated, there's a fair chance that you will die."
Advocates making this argument got a big boost for their case in November 2017, when a federal judge in Florida ordered that state's prisons start providing direct-acting drugs to its inmates at least until that state's case goes to trial in August.
"It was a great victory for people who are incarcerated and have hepatitis C because now we have a federal judge who said, ‘Look, this is just unconscionable,' and the state is going to have to do something about it," said Elizabeth Paukstis, public policy director of the National Viral Hepatitis Roundtable.
In July 2017, the Missouri lawsuit took a leap forward when the judge overseeing the case certified it as a class action on behalf of state inmates with hepatitis C. The Missouri Department of Corrections and Corizon, which are defendants in the lawsuit, have appealed that ruling.
Both the Missouri Department of Corrections and Corizon declined to comment on the suit or answer questions about their hepatitis C treatment protocols beyond saying they are following federal guidelines.
But if Missouri and other states are required to offer the new drugs, they would face a huge problem, said Gregg Gonsalves, an assistant professor of epidemiology at the Yale School of Public Health. "Even if they wanted to treat patients, they would break the bank. They would run out of money to treat every other medical condition," he said.
For example, if Missouri gave the 2,500 inmates that the ACLU says are candidates for Harvoni, the direct-acting antiviral drug it now uses, the cost would exceed $236 million, based on its list price. That far exceeds the Department of Corrections' entire budget for inmate health.
Gonsalves said the emergence of newer, cheaper drugs could help, and some state prison systems have managed to negotiate discounts.
Even at a lower cost, though, providing these drugs on a large scale could still cost states a fortune. But advocates insist it's worth it to stop the disease from spreading. And a 2015 study showed that as many as 12,000 lives would be saved if inmates across the country were screened and treated; preventing liver transplants and liver disease would save money in the long run.
"The impetus for treating infectious disease in the prison system is that it's a population you can reach, it's a population you can cure, and it's a population you can help prevent onward infections from," Gonsalves said.
Jymie Jimerson understands that many people might be skeptical about providing expensive health care for prison inmates. But she hopes they can see them as more than people convicted of crimes, she said.
"I'm not condoning what they did. I'm not condoning criminals," Jimerson said. "What I'm saying is, they're human beings. And there are hundreds, hundreds of first-time offenders that this medication would cure them. So that when they went home, they could actually spend time and enjoy a little bit of life with their families."