Proponents of the California law contend that some doctors have been hesitant to help dying patients, for fear of being penalized for using drugs or devices that don't have FDA approval.
In the past three years, 33 U.S. states have passed laws aimed at helping dying people get easier access to experimental treatments. Supporters say these patients are just looking for the "right to try" these treatments.
Such laws may sound compassionate, but medical ethicists warn they pose worrisome risks to the health and finances of vulnerable patients.
California's right-to-try law was enacted in January. It protects California doctors and hospitals who want to prescribe any medicine that has successfully made it through a Phase 1 drug trial. That's the first stage of human testing required by the Food and Drug Administration — the sort of study that focuses merely on a drug's safety, not its effectiveness.
Ian Calderon, a Democrat from Southern California and majority leader in the state's Assembly, was one author of the law. He said that if he had just received a terrible diagnosis, he would want to try anything possible to live.
"My thought would be, 'What do I have to lose?'" Calderon said. "I have an opportunity to potentially find a cure. Or at least find something that prolongs my life — find something that could help me."
He said the law seemed to him the logical next step, after California passed a law in 2016 permitting physician-assisted death.
"It's inhumane to have a law on the books that allows you to end your own life, but no law on the books that allows you to fight to extend it," he argued. "That just seems counterintuitive."
Proponents contend that some doctors have been hesitant to help dying patients, for fear of being penalized for using drugs or devices that don't have FDA approval.
California's law ensures that doctors can help patients petition to get an investigational medicine from drugmakers without fear of censure from the state's medical board. It eliminates regulatory obstacles on the state level and creates processes for patient consent and data collection.
David Huntley, a San Diego State University professor who died from ALS, or Lou Gehrig's disease, in 2015, was among the patients who fought for California's law. Before he died, Huntley testified in favor of the bill from his wheelchair.
His widow, Lina Clark, founder of the patients' advocacy group HopeNowforALS, said her husband completely understood what was at stake.
"The patient community is saying: We are smart, we're informed, we feel it is our right to try some of these therapies, because we're going to die anyway."
It's a compelling argument, but there are serious risks, according to doctors and medical ethicists.
"We know some people try to take advantage of our desperation when we're ill," said Dr. R. Adams Dudley, director of the Center for Healthcare Value at University of California, San Francisco. "If we take the FDA out of it, how do we protect people from physicians or drug companies that will want to sell them things and will want to prey on their desperation?"
Dudley said the FDA and the clinical trial process were put in place for a reason — not just to shut out would-be snake oil salesmen, but to ensure that manufacturers are producing a safe product and not cutting corners.
"If you say there's a path that's not through the FDA," he said, "then there are billions of dollars out there to be made by skipping the important steps that we've developed."
The new state laws are called "right to try," Dudley said, but all that patients can really do is ask for an experimental medicine. Drug companies don't have to give them the medicine, and insurance companies don't have to pay for it.
Dudley said patients could spend huge amounts of money trying a drug that hasn't been proven to work. And the patient may also be giving up their hopes for a controlled, peaceful death at home.
"Instead, you try a drug and you get very severe lung problems," he said, "and you end up on a breathing machine in a hospital. That could cost hundreds of thousands of dollars."
Although nearly three dozen right-to-try laws are now on the books, researchers at New York University who've been looking for evidence of the laws' usefulness haven't yet found a single substantiated case of a patient getting a drug using a state law.
That's partly, perhaps, because the FDA already has a process to help patients and their doctors apply for the use of experimental drugs (and such requests are nearly always approved). Still, Calderon and others point out that the process entailed in these "compassionate use requests" is much too slow and cumbersome for many patients who are dying.
A new federal research law might help change that. The 21st Century Cures Act requires drug companies to be more transparent about how they decide who gets experimental access to promising medications, and how long it will take.
This story is part of a partnership that includes KQED, NPR and Kaiser Health News.
Despite a disappointing fourth quarter of 2016, J. Mario Molina, CEO of Molina Healthcare, remains a fan of the Affordable Care Act overall and hopes Congress will consult with him and other insurers as it debates the health law's fate.
Some large health insurance companies have suffered losses under the Affordable Care Act, leading to a few high-profileexits from the online marketplaces. Humana is just the latest, announcing in January that it will stop offering health insurance on the ACA health exchanges at year's end.
But the administrators of a smaller, California-based insurer — Molina Healthcare — managed to turn a modest profit in the early years of the 2010 health law and break even in 2016. How did they do it?
"We understood the demographics of the people that we're serving a little better," said Dr. J. Mario Molina, CEO of Molina Healthcare, "because we've been doing it for so long."
Despite a disappointing fourth quarter of 2016, Molina remains a fan of the Affordable Care Act overall and hopes Congress will consult with him and other insurers as it debates the health law's fate.
"It doesn't need to be scrapped and replaced," he said. "It needs a tuneup."
Molina's business grew out of a network of Southern California medical clinics serving mostly low-income patients that was founded in 1980 by his father, David, also a doctor. Sometimes when his dad's patients couldn't pay, they would trade services, or give him items from their homes instead of cash, the younger Molina recalled: a glass decanter, a pipe organ, even a dog.
"My father was old-fashioned," said the CEO. "He believed doctors had an obligation to take care of patients and that the primary issue was not how they were going to get paid."
In 1994, David Molina started his health insurance company, focusing on getting care to patients on Medicaid — government health insurance for the poor and disabled.
That is what positioned Molina Healthcare to move into the Obamacare marketplaces so smoothly, Mario Molina said — most people who signed up for Obamacare plans represent low-income households.
"It's a different population most insurance companies haven't been interested in," he said.
For example, transportation is an issue for his company's customers. They often take the bus to medical appointments, he said, so they'd rather see a doctor close to home than at an academic hospital 30 miles away.
"We don't contract with every hospital and every doctor," he admitted. "It's not everyone, but it's enough so that you can find a doctor and the hospital and the services you need." His company operates in 12 states and Puerto Rico.
Although some observers have criticized narrow insurance networks for not offering consumers enough choice, especially of medical specialists, having fewer doctors in the Molina Healthcare network has meant lower costs for the company and its customers. That means the health insurance company has been able to earn a modest profit — roughly 1 percent in the first couple years of Obamacare.
Some larger insurers are accustomed to creating health plans for big companies, who often want more doctors and more benefits included, in hopes of attracting and retaining top employees. But plans like that cost more.
"They're looking at things sort of from the top down, and we're looking at things from the bottom up," Molina said.
He's accustomed to running a low-cost, low-margin business, while big guys like Humana, Aetna and UnitedHealthcare aren't. Industry analysts say that's why some of the big players lost money with Obamacare.
"It's easier to work up from a low-cost position than it is to work down from a higher-cost position," said Josh Weisbrod, a health care consultant with Bain & Company. "For an insurer that is used to selling employer plans with rich benefit designs and broad networks, it is difficult for them to transition that to a narrow network of lower-cost providers."
But Molina said there's been a serious downside to his company's success: a provision of the Affordable Care Act known as "risk transfer." The provision was designed to help insurance companies cover losses if they ended up with a lot of very sick, expensive patients. It works like this: Companies with fewer patients who have a chronic or serious illness pay some of their revenue to the companies that cover more patients who are sick.
It was a fine idea, Molina said, but the formula lawmakers came up with to calculate risk was all wrong.
"Let's put it this way," he said. "Currently Molina Healthcare is returning 25 percent of our premiums to the government, which are then distributed to our competitors. So we are really subsidizing our competitors and helping them, rather than forcing them to compete."
And that is one of the things that hit Molina's bottom line in 2016, resulting in much lower profits than originally projected for the year and a significant fourth quarter loss. Molina complained that the risk formula seems to punish efficiency rather than help those who had some bad luck.
"I think it was done by well-meaning people who had a theoretical knowledge but not a practical knowledge of insurance," he said.
If lawmakers need guidance on how to fix Obamacare, he added, they should look at one state that definitely got it right: California.
California insurance regulators and health officials "forced everyone to really compete," Molina said, "and that made everyone kind of sharpen their pencils and do a better job," he said. "It's kept everyone on their toes, and, as a result, I think there's been more stability in the marketplace."
There's also more predictability. California may have more business regulations than other states, but Molina suggested that has created a level playing field.
"The state doesn't make arbitrary decisions," he said. "We can plan from year to year. We understand the rules. Imagine if you're trying to play a game and the rules change in every quarter."
Molina expressed hope that newly elected rule makers at the federal level will take his message to heart, too.
This story is part of a reporting partnership with KQED, NPR and Kaiser Health News.
At least 83% of the nation’s largest patient advocacy groups take contributions from the drug, medical device, and biotech industries, raising questions about whether they consistently put patients first.
High-profile advocacy groups for patients with cancer, Alzheimer's, HIV and other diseases almost always accept funding from pharmaceutical firms, and many fail to report any contributions, new research shows.
At least 83 percent of the nation's 104 largest patient advocacy groups take contributions from the drug, medical device and biotech industries, raising questions about whether they consistently put patients first, according to a paper published Wednesday in the New England Journal of Medicine.
"If you're a policymaker and you want to hear from patients, there's a danger if there's an undisclosed or underdisclosed conflict of interest," said Matthew McCoy, the paper's primary author. "The 'patient' voice is speaking with a pharma accent."
Of the 18 nonprofits not reporting pharmaceutical money, all but five failed to disclose their donors at all. Just one of the 104 nonprofits stated explicitly that it does not accept industry money.
Executives or former executives in the pharmaceutical industry serve on a third of the organizations' boards, the researchers found.
These possible conflicts of interest are troubling, experts say, because while patients and drugmakers both want better treatments, they often have opposing goals.
Patients want cheaper medicine; the pharmaceutical industry wants to maximize revenue. Patients want information about the efficacy of certain drugs; the industry often seeks faster approvals for drugs, at which point the incentive to collect information about a drug has diminished, according to Vinay Prasad, assistant professor of medicine at the Oregon Health and Science University.
"Who is setting the narrative of what patients want?" he said.
Prasad is cited by the researchers but did not help conduct the study.
Research into the relationship between patient advocacy groups and the pharmaceutical industry is nascent, but the study finds that drug dollars prop up a higher proportion of patient groups than some previous papers.
A survey of patient advocacy executives published in the medical journal JAMA in January, for example, found that 67 percent of groups reported industry donors.
The latest study focused on larger groups that receive at least $7.5 million in revenue each year, which likely churned up more industry funding than a broader approach might have, said McCoy, a postdoctoral fellow in advance biomedical ethics at the University of Pennsylvania.
Also, pharmaceutical companies might funnel money to patient advocacy groups through other nonprofits, which would be harder to trace. "A patient organization may have gotten $1 million from the Making People's Lives Better Fund. … That second degree of interrogation is not something we captured," said McCoy.
About one-fifth of the patient advocacy groups studied accepted $1 million or more from drugmakers, but exactly how much those groups accepted is fuzzy. Half of the organizations disclosed their donations in ranges rather than precise amounts, and most of those reported their highest donations with an unbounded upper range, the study says.
Neither the NEJM paper nor the JAMA study in January examined how often a patient organization lobbied Congress, wrote letters to lawmakers or took stances on legislation.
But transparency in pharmaceutical ties is important even for advocacy groups with little presence on Capitol Hill, said Susannah Rose, one of the authors of the JAMA study.
Aside from steering legislation, the groups are important stakeholders in the delivery of care, research funding and patient assistance.
"Advocacy groups often give a voice to people who do not have a voice," said Rose, scientific director of research in the Office of Patient Experience at the Cleveland Clinic and an expert in bioethics.
But whereas academic research centers, physicians and other medical professionals often feel pressure to reveal their associations with industry and face institutional checks against potential conflicts of interest, patient advocacy groups are too often overlooked, she said.
The paper comes at a time of both growing influence and heightened scrutiny of patient advocacy groups.
Pharmaceutical industry giant Pfizer said Friday it had received a subpoena related to its support of patient advocacy programs that offer financial assistance for Medicare patients' copays. Johnson & Johnson disclosed Monday it had also received a subpoena from the U.S. Attorney's Office for the District of Massachusetts seeking information about its support of organizations that pay for patient assistance. Those follow similar subpoenas sent to four drugmakers in 2015 and 2016 — Gilead Sciences, Jazz Pharmaceuticals, Valeant Pharmaceuticals and Biogen.
U.S. officials have not commented about the probe. But they could be trying to assess whether drugmakers are covering patients' copays for expensive drugs and leaving taxpayers with the bill for the remainder of the cost, said Joel Hay, professor of pharmaceutical economics and policy at the University of Southern California. Hay has served as a paid expert witness in lawsuits against drugmakers. Pharmaceutical companies cannot subsidize the purchase of their products by Medicare.
Paying a relatively small subsidy for patients' copays can also "take the pressure" off Congress to pass reforms that meaningfully slash drug prices in a way that undercuts the bottom line, said Prasad.
The Pharmaceutical Research and Manufacturers of America, the drug industry's trade association, responded to questions about the NEJM study in a statement: "While we cannot speak for particular organizations, we have heard from many patients who are concerned about the growing out-of-pocket cost burden when trying to access needed health care services and treatments."
KHN's coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.
The concern over soaring prescription drug prices continues to dominate headlines, attracting scrutiny from Capitol Hill and President Donald Trump, who said during a January press conference that the industry was "getting away with murder."
But some doctors — frustrated by what they see as unreasonable price tags and political stagnation — are coming up with do-it-yourself solutions. Their efforts to bring down costs for their patients highlight the arbitrary and often needlessly exorbitant prices of drugs in the U.S., they say.
One striking example is the response of Dr. Cathleen London, a family doctor in Milbridge, Maine, to news that the pharmaceutical company Mylan had driven up the prices of its signature EpiPen, a branded auto-injecting device containing a preset dose of epinephrine, a lifesaving drug, to be used by people at risk of experiencing anaphylactic shock triggered by an allergy. "I thought: This is disgusting. There's got to be another auto-injector," she said. "I started Googling."
She ended up devising a workaround for her patients who needed one.
"I basically build an auto-injector. I can do it for pediatric and adult dosing," she said. "I found the right syringe. I put in the dose that I wanted. Whether it's expired or used, people come back and refill it."
The price of EpiPens has surged in recent years — an increase connected to the device, not the active ingredient, epinephrine, which costs pennies. A two-pack now costs more than $600, up from just over $100 in 2009. In response to public outcry and lawmaker scrutiny, Mylan last December released its own generic version of the device at about half the cost, but that's still out of reach for many.
Meanwhile, some insurers have dropped coverage of the pricey name-brand auto-injector pack or made sure customers have access to cost-effective alternatives. Drugstore chain CVS reduced the price of a generic competitor. But all still cost at least $109.
Fixes like Dr. London's can alleviate the pricing issue, but replicating this approach on a large scale could pose problems, since someone with medical expertise must do the refilling to avoid contaminating the device, meet quality standards for the device itself, and make the user aware of any safety issues that using the injector might pose.
Still, for customers with little money to spare, innovations like Dr. London's might represent a path to more security. In addition to costing less, her process tackles a key issue. EpiPen auto-injectors aren't reusable, and epinephrine expires after 18 months, so people with serious allergies must get a fresh device each year.
London charges her patients $50 for an initial device, and $2.50 for a refill.
"There's value to the auto-injector, but it is not built in a way that's refillable or reusable," said Stephen Schondelmeyer, a professor at the University of Minnesota College of Pharmacy, who heads its department of pharmaceutical care and health systems.
Mylan points out, though, that the EpiPen is designed specifically to administer epinephrine quickly and properly in an emergency situation and quotes the Food and Drug Administration in saying that the "the device that delivers the medication is just as critical." Nevertheless, critics say that doesn't justify the skyrocketing of the price paid for a device that has remained unchanged for years.
In the past, insurance has shielded consumers from most of the rising costs of prescription medicine. But that's changed in recent years, as health insurance plans have increasingly required greater cost-sharing — typically through so-called high-deductible health plans, in which beneficiaries pay more out-of-pocket before coverage kicks in. Many of the GOP-backed plans under consideration in the effort to dismantle the Affordable Care Act emphasize this style of coverage, meaning more allergy patients would experience directly the consequences of this price surge, which has drawn scrutiny from the Senate Judiciary Committee. The issue also came up during a recent confirmation hearing for the Trump administration's pick to head the Centers for Medicare & Medicaid Services, this time in regard to costs for federal health programs.
London helps her patients sidestep the costs of an EpiPen by purchasing reusable auto-injectors manufactured by the British company Owen Mumford. She fills it with epinephrine herself. (Both the auto-injector and hormone are approved by the Food and Drug Administration.) Patients can come in for an epinephrine refill after they've used the dose, or after it's expired.
"It's just a no-brainer to do this," she said.
Experts say there's no easy way to calculate what is spent annually on EpiPens that are thrown away because they are past their expiration date. Given the price tag, it's likely many millions of dollars.
Such workarounds can help individuals mitigate climbing costs, though they require extraordinary effort by the doctor and trust from the patient. London did a lot of research to find an auto-injector that was appropriate. The one she settled on is generally marketed for use with insulin syringes, but can also be used for many medications.
The strategy is not without risks, noted Schondelmeyer, who worries about issues of sterility in a reusable device and other safeguards surrounding products made beyond the scope of FDA's watchful eye. That's why he is among those who caution against do-it-yourself remedies and against applying such approaches on a larger scale.
Meanwhile, if a company were to attempt to market such a product, they would likely run into federal regulations and safety standards. Setting up a factory, or otherwise mass-producing the device, he added, would face regulatory hoops that could take years to clear before the product would be available.
"These sound like simple solutions," said Schondelmeyer. "But these aren't market-based solutions that can work broadly."
Other health professionals and government health agencies have employed strategies to deal with the EpiPen's escalating price tag. In at least a dozen states, pilot programs are either underway or being explored for emergency medical technicians to replace the EpiPens they carry with reusable syringes kits.
For example, participating EMTs in New York are given syringes, which can be filled with epinephrine on the spot. Analysts estimate that between $6 million and $10 million is spent annually by the state's first responders on EpiPens "that are generally never used," said Jeremy Cushman, an associate professor of emergency medicine at the University of Rochester, who's leading the New York effort. Using refillable syringes, he said, the total expense per year comes below $400,000.
"You're looking at well over an order of magnitude of savings," Cushman said.
This replacement makes sense for people with medical training, like EMTs, Cushman said. But it doesn't work for everyone.
And some institutions, such as school systems, have been slower to contemplate this and other replacement options — in part because they have less incentive to do so. At least 11 states require that schools keep epinephrine on hand, and schools often receive EpiPens from the manufacturer at heavy discounts or free.
Baltimore County Public Schools, for instance, keeps about 400 EpiPens on hand in its 170 facilities. They record from 25 to 30 anaphylaxis cases annually, about two-thirds of which require stockpiled EpiPens. The rest are thrown away, said Debbie Somerville, the district's coordinator for health services. It's a similar story across the country. In San Francisco, the district's public schools stock EpiPens and typically use fewer than 10 a year and dispose of about 120. Both systems receive the devices for free.
In Baltimore, Somerville said, a switch to syringes and epinephrine has been discussed. But "it's very hard to make the argument" when emergencies can happen without a school nurse or medical professional on hand and a failure to administer the hormone quickly and correctly could be fatal, she explained. That said, "if we had to buy them at market rate right now, it would be a significant investment."
Allergy patients who are advised to carry around this emergency treatment also don't necessarily have the specialized medical knowledge to fill a syringe on the spot. They need something easier, with less room for error. That's why the EpiPen, and in particular the auto-injector, has become so popular.
But, as cost-sharing grows and prices climb, cheaper, homegrown alternatives are catching on, said José Gómez-Márquez, an instructor at the Massachusetts Institute of Technology. He runs a lab focused on promoting do-it-yourself medical technology. Márquez's team, which started out researching how widespread this notion had become, found a growing interest among health professionals to create innovative solutions to patients' problems. This work led to a broader online effort known as Maker Health, which functions as a clearinghouse for ideas he calls "hardware protocols."
In one such protocol, a nurse at one Texas hospital devised a portable and adjustable three-head shower that makes it easier to wash burn patients by keeping damaged skin tissue away from the water spray. Traditionally, nurses have spent hours washing these patients, manually moving around the showerhead. This fix saves labor, time, water and money.
"If you have extreme health care circumstances, you will find extreme health care ingenuity," he said. "Five years ago nobody cared about pricing. Today, people are more price-sensitive."
That's true of London's allergy patients — for whom those EpiPen price hikes matter a great deal.
"The ones who have no insurance, or whose insurance has no [drug] coverage — they just go without," London said. "They carry around the expired one. They think it's going to work, and no, it isn't."
KHN's coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.
PRINCETON, Ill. — Commuting past the barren winter fields in northern Illinois, Cathie Chapman worries about the future.
More than a year ago, she lost her job at a nearby rural hospital after it closed and, as Republicans work to dismantle the Affordable Care Act, wonders whether she'll soon be out of work again.
"Many of my friends did not find jobs they love," she said. "They're working for less money or only part time. Some haven't found any jobs yet, even after a year."
Now she runs the pharmacy at Perry Memorial Hospital here, warily watching the Republicans' repeal efforts.
"I think everybody who works in health care now feels a little uneasy," said Chapman. "We don't know what's coming around the corner, and how it will affect us. But we know that change is happening so fast, it is exhausting and difficult to keep up with."
Rural hospitals have long struggled to stay open. They have far fewer patients and thin profit margins. Dozens have closed across the country in recent years, mostly in states that didn't expand Medicaid.
But in Illinois, which did extend Medicaid to nearly all poor adults, patients at Perry Memorial have gained coverage under the Affordable Care Act and many hospitals have found firmer footing.
If large numbers of people lose their insurance under the Republicans' replacement, the hospital's finances — and those of its patients — would be at risk, especially after the hospital invested so much money and time in complying with the health law, said chief executive Annette Schnabel.
"We have spent the last six years gearing up towards everything that we were responsible for doing in the ACA," said Schnabel. If the hospital has to "totally go a different direction, how will we do that? It's going to take a lot of work."
And for some hospitals to survive or break even, it would require Congress to restore billions of dollars in funding that kept hospitals afloat before the 2010 law took effect.
Hospitals across the country made a high-stakes trade when they signed on to the Affordable Care Act. They agreed to massive cuts in federal aid that defrayed the cost of caring for the uninsured. In exchange, they would gain tens of millions of newly insured customers. Now that deal is in jeopardy, and many hospital executives anxiously await whatever comes next.
In Chicago, John H. Stroger Jr. Hospital of Cook County is among the nation's busiest hospitals, handling most of the city's gunshot victims. The vast majority of its patients used to be uninsured, and the county-run hospital struggled to take care of their medical and mental health needs.
Those patients now have Medicaid coverage because of the Affordable Care Act, and the Cook County hospital system gained $200 million in new revenue to cover their services, breaking even for the first time.
"We have no interest in slipping back in what we've been able to do," said Dr. John Jay Shannon, chief executive of the Cook County Health and Hospitals System. "We're not able to do the kind of work that we do today with good will alone. Our staff are not a volunteer staff. We can't get IV fluids and medical equipment on credit and a wink and a nod."
Two hospital trade groups — the American Hospital Association and the Federation of American Hospitals — have warned of "an unprecedented public health crisis" if the law gets hastily scuttled.
They say if Congress repeals the law entirely and 20 million people are kicked off their insurance, hospitals will lose $166 billion in Medicaid payments alone in the next decade.
And hospitals face much steeper losses if certain Medicare cuts that were part of the law aren't restored.
In Chicago, limo driver Jerold Exson is one patient who could lose coverage and have his hospital bills — once again — go unpaid. These days, the hospital helps enroll low-income adults such as Exson into Medicaid. In 2014, he was shot nearly a dozen times in a case of mistaken identity.
His medical care is now covered, and the hospital can provide follow-up surgeries, physical therapy and mental health treatment that were often off-limits to the uninsured.
Clinical psychologist Natalia Ruiz helps Exson manage the after-effects of gun violence. "I used to be real antsy," said Exson who suffers from post-traumatic stress disorder. He recalled a recent moment when he was driving and a "rock hit the window, and it kind of sent me into a tailspin."
The health law also shifted the business model for U.S. hospitals. It offered them financial incentives to move away from expensive ER visits to primary care and managing chronic conditions.
Earl Williams Sr. finally has brought his diabetes under control. He's diligent about exercising, taking his medication and seeing his doctor.
"I had high sugar levels, I had high blood pressure, there was quite a few things that was going on with me that now I know how to control," said Williams.
Before the Affordable Care Act, hospitals had little incentive to reduce emergency department visits, especially from Medicare patients who generate a lot of revenue.
At University of Chicago Medicine, an academic medical center, Dr. Kenneth Polonsky said if those incentives are rescinded and patients forgo preventive care, they'll clog up already strained emergency rooms.
"We'll go back to a very frustrating time, where people had limited options for health care, because of inability to get health insurance," said Polonsky, dean of the Division of the Biological Sciences.
The uncertainty is also roiling county governments, which often fund medical care for the poor.
The burden on local taxpayers to fund the Cook County health system has dropped by $300 million since the health law went into effect, and repealing the law could force local governments to raise taxes.
"It's a $300 million hole in our budget," said Toni Preckwinkle, president of the Cook County Board of Commissioners. "There aren't a lot of options other than raising more revenue. It's a nightmare for us."
In Waukegan, Ill., near the Wisconsin border, Vista Health System chief executive Barbara Martin said that with more patients covered and additional reimbursement from the ACA, she has invested in new equipment and hired hundreds of new employees across Vista's two for-profit hospitals.
She said if the 900,000 Illinois residents who gained insurance under the law lose coverage — and hospital revenue drops suddenly — hospital executives estimate 95,000 jobs could be lost.
"That certainly would impact jobs at Vista," Martin said. "We're going to go back to those days where hospitals were closing."
But Edmund Haislmaier, a senior fellow at the Heritage Foundation, a conservative think tank, said the U.S. already pays too much for health care. A member of President Donald Trump's transition team on health policy, Haislmaier said communities — and states and local governments — shouldn't rely on hospitals to create jobs and fill budget holes.
"Hospitals, in particular, have become economic development projects," he said. "If you're paying tax dollars for Medicare or Medicaid, treating that as an economic development project is a problem, not a benefit."
More than a dozen top Republican lawmakers declined to be interviewed for this story. But a spokeswoman for Sen. Lamar Alexander, the Tennessee Republican who chairs the Senate Committee on Health, Education, Labor and Pensions, said in a statement that Alexander "is listening to hospitals, doctors, patients, state insurance commissioners, governors" as they draft the replacement plan.
The most recent draft of the Republican's proposal would eliminate the Medicaid expansion, which covers 14 million people, by 2020. To offset the increase in uninsured patients, the plan would reverse some of the payment cuts to hospital.
Back in Chicago, patients like Earl Williams have been bringing their questions to their doctors, with the hope of some clarity.
At a recent checkup, Williams asked pointedly, "Am I going to have insurance in a month or two? That's kind of scary for brothers that's in the community."
"You and I have been knowing each other for a long time, and I'm going to give it to you straight," responded William's physician, Dr. Pete Thomas. "And that is: It's likely that it's going to change. It's not going to be the same."
PBS NewsHour producer Jason Kane contributed to this story.
The key part of Indiana's experiment requires low-income participants to make monthly Medicaid payments. Information provided by the state shows that the provision isn't working as well as it should, some health policy experts say.
Indiana expanded Medicaid under the Affordable Care Act in 2015, adding conditions designed to appeal to the state's conservative leadership. The federal government approved the experiment, called the Healthy Indiana Plan, or HIP 2.0, which is now up for a three-year renewal.
But a close reading of the state's renewal application shows that misleading and inaccurate information is being used to justify extending HIP 2.0.
This is important because the initial application and expansion happened on the watch of then-governor and now Vice President Mike Pence. And Seema Verma, who is President Donald Trump's pick to lead the Centers for Medicare & Medicaid Services, helped design it. (Among other functions, CMS oversees all Medicaid programs.) So, states are watching to see if the approval of Indiana's application is a bellwether for Medicaid's future.
To get the program extended again, the Indiana Family and Social Services Administration has to prove to CMS that the experiment is working and that low-income people in the state are indeed getting access to care and using health care efficiently.
The key part of Indiana's experiment requires low-income participants to make monthly payments. Advocates say this promotes recipients' taking personal responsibility for their health care. But some health policy experts say the information provided by the state shows that the provision isn't working as well as it should. Some examples:
The Claim: Most members are making regular payments to maintain coverage.
The Fact: A lot of people are missing the first payment.
The state's application says that "over 92 percent of members continue to contribute [to their POWER accounts] throughout their enrollment."
This claim is missing context. Here's a primer on how HIP 2.0 works: Members can get HIP 2.0's more complete coverage, the HIP Plus plan, by making monthly payments into a "Personal Wellness and Responsibility Account," or POWER account.
If they don't make the payments, there are penalties. If a recipient makes less than the federal poverty level — about $12,000 a year — they're bumped to HIP Basic, a lower-value plan that requires copays and doesn't include vision or dental insurance.
If a recipient is above the poverty line and misses a payment, they become locked out of coverage completely for six months.
The state's claim that 92 percent of members make consistent payments is based on data in a report by the Lewin Group, a health policy research firm in Virginia that evaluated HIP 2.0's first year.
But the Lewin report also says that when people sign up for HIP 2.0 they can be declared "conditionally enrolled," which means they're eligible but have not yet made their first payment.
According to the Lewin report, in HIP 2.0's first year, about a third of people who were conditionally enrolled never fully joined.
"I don't see those numbers being captured," said Dr. David Machledt, senior policy analyst with the National Health Law Program, which advocates for low-income individuals. Machledt said the state should recalculate the figure to include those people, because it's potentially an indicator that people are confused about how the program works or that they can't afford the payments.
He added that the figure cited is based on the first year of HIP 2.0, and that the rate of losing coverage for missing payments has increased substantially since then.
The Claim: HIP 2.0 users check their POWER account.
The Fact: More than half of people don't even know they have one.
The state says the POWER account is promoting personal responsibility in health care; meaning, if someone is aware of how much they are spending, they'll choose their medical care wisely. As evidence, the state writes in its application that 40 percent of HIP Plus members "check their [POWER Account] balance at least once a month."
Again, the state leaves out important context. According to the Lewin report, most people in HIP Plus didn't know they had a POWER account. Of those who did, 40 percent checked their account once a month, but that's much smaller than 40 percent of all HIP Plus members. In fact, an analysis of the numbers shows only about 19 percent of HIP Plus members reported checking the balance of their POWER account monthly.
Rather than evidence of personal responsibility, Judy Solomon, vice president for Health Policy at Center on Budget and Policy Priorities, sees evidence of confusion.
"I think that's another really significant finding [in the Lewin report] that so far I have never seen the state come to terms with," said Solomon.
A spokesperson for the state wrote in an e-mail that the phrase "of the members surveyed" was unintentionally omitted from the application.
The message did not address the overall concern that the statement was misleading.
The Claim: People on HIP Plus are more responsible.
The Fact: Experts say HIP Plus is just better insurance.
The application also says "HIP members who contribute [to their POWER accounts] are twice as likely to obtain primary care (31 percent to 16 percent), have better prescription drug adherence (84 percent to 67 percent), and rely less on the emergency room for routine treatment."
Machledt said simply showing that HIP Plus members use the emergency room less frequently than HIP Basic members doesn't tell the whole story.
"They don't talk about the risk profile of those different groups," Machledt said. He said people who are above the poverty line are generally less likely to frequent the ER in the first place. "There's no evidence to me that they've risk-adjusted … to show that they're comparing apples to apples," he said.
Indiana argues that the higher levels of primary care use and drug adherence for those making POWER account payments "confirms the principle of personal responsibility."
But Solomon said the differences in behaviors simply confirm something else: Those who pay their POWER account have better insurance. HIP Plus makes it easier for people to access primary care and to adhere to their prescription drug regimens, Solomon said.
"The policy for people in HIP Plus is that they get a three-month supply of drugs, and can even use mail order, without any copays," she said. Meanwhile, people in HIP Basic have to pay copays and are limited to a one-month supply of drugs.
Solomon said getting less primary care and relying on the ER for health crises is worse for patients and could also mean higher costs. "You have large numbers of people that are not getting care in the right place at the right time, and not maintaining adherence to prescription drug regimens."
The Claim: HIP 2.0 is meeting its enrollment projections.
The Fact: No, it isn't.
The state's application reads "HIP has continued to meet its enrollment goals with over 394,000 individuals fully enrolled in HIP as of December 1, 2016."
But the state isn't meeting its enrollment goals. According to a chart published in 2014 in Indiana's original proposal for HIP 2.0, its enrollment goal for December of 2016 was higher: 424,339. (The chart is off by a month, because the state started HIP 2.0 a month later than planned, so the actual projection for December 2016 appears on the line for November 2016.)
The most recent enrollment report shows 403,142 HIP members in January 2017, short of the state's projection of 427,702.
The Claim: Surveys show people like HIP 2.0.
The Fact: This survey's results are unreliable.
There's reason to doubt the survey results that underlie much of the Lewin report, according to Dr. Leighton Ku, director of the Center for Health Policy Research at the Milken Institute School of Public Health at George Washington University.
"They were not using what would generally be considered best practices in their survey methodology," Ku said.
Ku said the methodology available to the public is vague. From the information provided, he said, there are multiple ways that bias could have been introduced into the survey results used in the Lewin report. For one thing, the sample sizes of the survey were too small to draw accurate conclusions, Ku said, and the data was analyzed using "not an optimal method."
Ku said that the results are not displayed in a scientific manner and that it appears the survey and analysis were done in a hurry. "You would not, as a survey researcher, have great confidence in the results that they show," he said.
Conclusion
As Indiana looks to extend HIP 2.0, health policy experts say it's important to get an accurate picture of how well the program is working. Requiring POWER account payments was key to making the program a reality in Indiana, but they say a more traditional Medicaid expansion — one that does not require monthly payments and six-month lockouts — is a better option.
Dr. Jennifer Walthall heads the Indiana Family and Social Services Administration, the government agency that runs HIP 2.0. She said that in order to comment on discrepancies between the state's extension application and the Lewin report, "I would have to go back and look at the way that these data were reported." She continued, "I'm happy to look into that and get that for you."
In a separate prepared statement, the agency noted that the state "has made significant achievements" on HIP 2.0's stated goals and that it looks forward "to continuing to build on these successes with future versions of HIP. … The analysis of this program is constant and ongoing and includes continuous conversation with our federal partners to discuss all aspects of the proposed waiver as well as program outcomes."
If the application does not go forward, the state could choose to expand Medicaid under the Affordable Care Act without any special provisions, or not accept the expansion at all. The federal government welcomes public comment on Indiana's application until March 17.
Tiny — and very blue — Vermont could be at the leading edge of the health reforms envisioned by the Trump administration and a Republican Congress.
The Green Mountain State, population around 626,000, got a broad waiver last October from the federal government to redesign how its health care is delivered and paid for. The statewide experiment aims to test new payment systems, prevent unnecessary treatments, constrain overall growth in the cost of services and drugs, and address public health problems such as opioid abuse.
The six-year initiative — an outgrowth of a failed attempt by Vermont a few years ago to adopt a single-payer plan for all residents — could eventually encompass almost all of its 16 hospitals, 1,933 doctors and 70 percent of its population, including workers insured through their jobs and people covered under Medicare and Medicaid.
The Obama administration approved the experiment, but it fits the Republican mold for one way the Affordable Care Act could be replaced or significantly modified. The Trump administration and lawmakers in Congress have signaled that they want to allow states more flexibility to test ways to do what Vermont is doing — possibly even in the short-term before Republicans come to an agreement about the future of the ACA.
Two Republican senators, Bill Cassidy of Louisiana and Susan Collins of Maine, introduced legislation in January that would permit individual states to design their own health reforms and keep provisions of the health law intact.
Coincidentally, the ACA contains a provision that allows states to launch such experiments starting this year, as long as they meet the ACA's overall goals for coverage expansions and consumer protections. One possible scenario, then, is that the Trump administration and Congress would agree to retain a version of that provision — modified to make it easier for states to experiment, experts say.
"It's a very reasonable approach, especially if it looks as if Congress can't agree on an immediate replacement plan," said Stuart Butler, a senior fellow in economics and health policy at the Brookings Institution in Washington, D.C. "States have long been the laboratories for social change and policy reform, and I think many governors, Republican and Democrat, would welcome this opportunity."
Chris Jennings, a longtime health policy adviser to Bill and Hillary Clinton and Barack Obama, said Democratic states also may be amenable. "There's a long way to go on this and there are downsides — for example, what would state legislatures actually do — but it looks like it will be a meaningful debate."
'We Want To Simplify How Things Work'
Al Gobeille, Vermont's secretary of Human Services and a Republican serving under newly elected Republican Gov. Phil Scott, said the hope is that the Trump administration will preserve the state's initiative.
"We are doing what [the Republicans] seem to be talking about," said Gobeille, who owns a restaurant company in the state. "We want to simplify how things work, with both coverage and access to care. We want to enhance competition and we want to lower cost growth even as we improve quality."
Scott and Gobeille this month announced the formal launch of the program's pilot phase. In 2017, 30,000 of the state's roughly 190,000 Medicaid patients will get care, under a set budget, through an organization called OneCare Vermont. OneCare's network of hospitals and doctors already provide care to about 100,000 Vermonters.
The state will give OneCare $93 million, in monthly payments, for the care of the 30,000 Medicaid patients — $3,100 per person. If OneCare spends more than $93 million, the company will absorb the loss. If OneCare spends less than that amount, the company and the state share the savings.
"This tests the concept of a global budget and streamlined payment which incentivizes better care," says Todd Moore, OneCare's CEO. "We may be a small state but we are trying a big thing. If it works, many states are likely to stand up and take notice."
Moore added that patients will be informed they are part of the program and can seek redress with the state's Department of Human Services if they feel their care is stinted in any way.
About 30,000 of the state's roughly 190,000 Medicaid patients will get care through an organization called OneCare Vermont. (Screenshot)
In announcing the pilot program, Scott said that if it's successful the experiment will be expanded in 2018 and beyond to encompass the rest of the Medicaid population, Medicare beneficiaries and people who have insurance through private employers and on their own, including through Vermont Health Connect, the state's Obamacare insurance exchange. Additional hospitals, doctors and other providers would become involved, likely under the umbrella of OneCare Vermont.
Medicaid covers almost 30 percent of Vermont residents, Medicare covers 21 percent, and the rest have either private insurance, coverage through the VA or Tricare (military) or are uninsured. About 4 percent of Vermonters were uninsured in 2015, one of the lowest rates in the nation.
Under the terms of Vermont's contract with the Obama administration, the target for the state's maximum overall cost increase in health spending would be 3.5 percent per year from 2018 to 2022 — that's two percentage points lower than the annual 5.6 percent average increase in health care spending nationally the federal government projects between this year and 2025.
Success or failure will also be assessed based on population health and quality of care measures. For example, the plan calls for a reduction of substance abuse deaths by at least 10 percent by 2022. Likewise, the plan sets a target for not more than a 1 percent rise statewide in the number of people with chronic diseases such as diabetes, high blood pressure and COPD (chronic obstructive pulmonary disease). The allowance for the slight increase takes account of the state's aging population.
The number of people with ready access to a primary care physician will also be evaluated, with a target of 90 percent of residents by 2022.
A Shift From 'Fee For Service'
To make all this work, almost every doctor and hospital would have to join OneCare Vermont or create their own accountable care organizations, or ACOs. In these organizations, providers agree to work together to improve and coordinate care and reduce spending under a set budget.
ACOs are also set up to allow payers to gradually shift to global per-patient payment, or other simplified forms of payment, and abandon traditional "fee-for-service" payment. Fee-for-service payment in medicine is widely viewed as providing incentives for excessive and wasteful care, as well as fraudulent billing. Both the Affordable Care Act and a 2015 law setting up an incentive-payment system in Medicare for doctors take major steps to test whether ACOs and alternative payment systems improve the efficiency and quality of care.
Vermont's initiative builds on those efforts.
Some in Vermont are skeptical the experiment will work well, however. Paul Reiss is a family doctor in Williston and chief medical officer for HealthFirst, Vermont's largest independent practice association. HealthFirst represents (but does not own or operate) 66 doctor groups with 250 doctors, physician assistants and nurses. Reiss said the state's largest hospital system — the University of Vermont Medical Center — dominates health care in parts of state.
"We are fearful that much of a restricted pot of money will still go mostly to that company, baking in the inefficiencies of a bloated hospital budget, and not be deployed equitably to the front lines of patient care across the state," Reiss said.
The University of Vermont Medical Center vigorously denied that its budget was bloated. Moore, who is affiliated with the hospital as well as being OneCare Vermont's CEO, said: "Statewide data do not confirm those assertions. The medical center is, in fact, a strong leader in ushering in a value-based system for Vermont."
Scott, in announcing the launch of the pilot phase this month, said if it does not work this year, the state would consider terminating the experiment early.
The ACA was a game changer for these clinics — it has enabled them to get reimbursement for much more of the care they provided. With repeal of the ACA looming, clinic directors said they stay up at night wondering what's next.
Treating people for free or for very little money has been the role of community health centers across the U.S. for decades. In 2015, 1 in 12 Americans sought care at one of these clinics; nearly 6 in 10 were women, and hundreds of thousands were veterans.
The community clinics — now roughly 1,300-strong — have also expanded in recent years to serve people who gained insurance under the Affordable Care Act. In 2015, community health centers served 24.3 million people — up from 19.5 million in 2010. Most of the centers are nonprofits with deep roots in their communities and they meet the criteria to be a federally qualified health center. That means they can qualify for federal grants and a higher payment rate from Medicaid and Medicare.
The ACA was a game changer for these clinics — it has enabled them to get reimbursement for much more of the care they provided, because more of their patients now had private insurance or were on Medicaid. Revenue at many clinics went up overall, and many of the health centers used federal funding available under the law to expand their physical facilities and add more services, such as dentistry, urgent care or mental health care.
With repeal of the ACA looming, clinic directors said they stay up at night wondering what's next. We spoke with four, who all say their clinics are in a holding pattern as Congress debates the health law's future.
Saban Community Clinic, Los Angeles
Julie Hudman, the CEO of Saban Community Clinic in Los Angeles, Calif., said there's a lot at stake for her patients.
"A lot of the folks that we see are single adults," she explained. "They're maybe more transitional. They're homeless patients. They have behavioral health challenges. They're really, to be honest, some of the most vulnerable and poorest patients of all."
Before the ACA went into effect, eligibility for Medi-Cal, as Medicaid is known in California, depended on a variety of factors, including income, household size, family status, disability and others. Under Obamacare, according to the California Department of Health Care Services, people can now qualify for Medi-Cal on the basis of income alone if their household makes less than 138 percent of the federal poverty level — that's $16,395 for an individual and $33,534 for a family of four.
Prior to the ACA, about half of the Saban clinic's 18,000 patients were uninsured, Hudman said. They paid little for treatment — maybe a copay of $5 or $10. Almost all of those patients qualified for Medi-Cal after the health law expanded eligibility, she said, and that's made a big difference for the clinic's bottom line: Medi-Cal pays the clinic around $200 per patient visit.
These days, more than half of Saban's revenue comes from health insurance. The possibility of losing some of that money, Hudman said, is forcing some hard decisions. She had been looking to lease or buy a fourth facility, she said, but now that plan is on hold; as are her hopes of expanding free help for the homeless.
"I'm not willing to move forward and take some of those risks," she said. "I need to make sure that we're able to pay our bills and pay our staff."
Before the last election, Hudman said, "we had a lot of momentum moving forward. And now we've just sort of stalled." — Rebecca Plevin, KPCC, Los Angeles
Jordan Health, Rochester, N.Y.
In the last few years, funding has been on the rise at Jordan Health, in Rochester, N.Y., and so has the extent of the clinic's services.
The boost in funding has partly come from higher reimbursement rates the ACA authorizes, and from the increased number of patients at the clinic who have insurance. But Jordan Health, which has 10 locations in the area, has also benefited from the federal government's pumping of more money into what are known as section 330 grants that enable expansion of services and facilities.
The 330 grant money gives qualified clinics the option of offering services that aren't billable to insurance plans. At Jordan Health, the funds enabled the hiring of some different types of health practitioners who were not previously part of the team — dietitians, behavioral health specialists and care coordinators. And that, in turn, said Janice Harbin, president and CEO of Jordan Health, means patients can increasingly get the different kinds of care they need in one place.
Almost 90 percent of Jordan's patients are considered a racial or ethnic minority, and over 97 percent live at or below 200 percent of the federal poverty line, according to data gathered by the federal Health Resources & Services Administration.
"When you're dealing with a situation of concentrated poverty," Harbin said, "your patient needs more than just 'OK, let me give you a checkup, and pat you on the back and say now go out and do all these things I told you to do.'"
Jordan Health received an increase of about $1 million since 2013, according to its grant coordinator, Deborah Tschappat.
Tschappat said she expects Jordan will get about the same annual award in 2017, assuming federal funding for the 330 program stays about the same. If federal funding is cut significantly, they would potentially lose some services.
For now, Jordan Health plans to "expand services judiciously, while increasing efficiency and productivity," Tschappat said.
In the coming months Harbin and her colleagues will be lobbying lawmakers in Albany and Washington, D.C., to renew Jordan's funding — including the 330 grant, which is set to end in September.
"We're used to doing a lot with a little, but we increasingly know that we do need to have financial support," Harban said. "And that's keeping us up at night." — Karen Shakerdge, WXXI, Rochester
Adelante Healthcare, Phoenix
Adelante Healthcare has been part of the health safety net in Phoenix for nearly four decades — when its doctors began helping farm workers in the city's surrounding fields. But the Affordable Care Act enabled Adelante to expand like a brand new business.
"Adelante has grown by 35 percent in the last 12 months," said Dr. Robert Babyar, Adelante's assistant chief medical officer. "We've increased our provider staffing — almost doubled our providers. And the number of services we provide has doubled."
Adelante operates nine clinics throughout the Phoenix metro area. The one where Babyar met with me includes play areas for children and a dental office.
Most of their 70,000 patients are low-income and about half are covered by either Medicaid or KidsCare — Arizona's version of the Children Health Insurance Program. In 2014, Arizona became one of the Republican-led states that expanded Medicaid under the ACA. That brought more than 400,000 people onto the state's Medicaid rolls and created big demand for Adelante. Low-income patients who did not have insurance before the expansion had relied on Adelante's sliding fee schedule. Much of that population now has health coverage, either through the ACA marketplace or the state.
"That opened up more options for our patients, more specialists they could see, procedures they could have done," Babyar said.
As Congress moves to repeal and replace the health care law, Adelante is in a holding pattern. It has delayed the groundbreaking of a new site until later this year because of the uncertainty. A full repeal of the ACA — without a replacement that keeps its patients covered — would limit any future growth, and strain the new staff and resources it has added. It wouldn't be the first time Adelante had to scale back its services because of changes to Medicaid. In 2010 and 2011, Arizona lawmakers froze enrollment for its CHIP program and for childless adults in Medicaid. Then, in 2012, Adelante lost more than a million dollars.
Babyar said it has taken several years to get their new patients into the system and working with doctors consistently to manage their conditions.
"All the progress we made with those patients to stay and be healthy — that can fall apart really quick," said Babyar. — Will Stone, KJZZ, Phoenix
"Definitely this clinic has benefited from Obamacare," said Dr. Michael Russum, who practices family medicine for Denver Health and helps lead the clinic. "And this population has benefited from Obamacare by the expansion of Medicaid."
That's what helped make the economics work as Denver Health put a new $26 million clinic in a high poverty neighborhood in 2016, said Dr. Simon Hambidge, Denver Health's CEO of Community Health Services. With the ACA in place, he said, the health system was able to count on the new clinic having a population of paying patients with insurance that could help support it.
Hambidge predicted the hospital will weather the storm if Obamacare is repealed and there are serious cuts to safety-net programs, like Medicaid and Medicare, as some Republicans have suggested. But it will probably be harder to open new clinics in other high-need neighborhoods, he conceded.
"We'll survive," Hambidge said. "We may not be able to be as expansive, because we would be back to less secure times." — John Daley, Colorado Public Radio
The bill says that it is the "intent of the Legislature" to enact a law that would establish a single-payer health care program for the benefit of everyone in the state. It does not offer specifics of what the plan would look like, nor does it mention a timetable.
This article first appeared February 22, 2017 on the Kaiser Health News website
Legislation introduced in the California Senate last week would set the state on a path toward the possible creation of a single-payer health care system―a proposal that has failed to gain traction here in the past.
The bill, which is a preliminary step, says that it is the "intent of the Legislature" to enact a law that would establish a comprehensive, single-payer health care program for the benefit of everyone in the state. The legislation, introduced by state Sen. Ricardo Lara (D-Bell Gardens), does not offer specifics of what the plan would look like, nor does it mention a timetable.
A single-payer system would replace private insurance with a government plan that pays for coverage for everyone. Proponents argue that single-payer systems make health care more affordable and efficient, but opponents say they raise taxpayer costs and give government too much power.
Medicare, the federally funded health coverage for the elderly, is often held up as a model of what a single-payer system might look like.
Lara said in an interview late last week that the state needs to be prepared in case the Affordable Care Act is repealed, as President Donald Trump and Congressional Republicans have promised.
"The health of Californians is really at stake here and is at risk with what is being threatened in Congress," Lara said, as the debate continued in Washington about the future of President Barack Obama's signature health law. "We don't have the luxury to wait and see what they are going to do and what the plan is."
Lara noted that while the Affordable Care Act expanded health coverage for many Californians, it left others uninsured or underinsured. He said the single-payer bill builds upon his "health for all kids" legislation, which resulted in coverage beginning last May for 170,000 immigrant children here illegally.
"I've met many children who have asked me point blank, 'What about my mom? What about my dad?' " Lara said.
He recently withdrew a requestto the federal government, based on a bill he had introduced, that would have allowed adult immigrants here illegally to purchase unsubsidized health plans through Covered California, the state's insurance exchange.
According to the text of the Lara's bill, a single-payer system would help address rising out-of-pocket costs and shrinking networks of doctors.
No state has a single-payer health system. Perhaps the best-known effort to create one was in Vermont, but it failed in 2014 after the state couldn't figure out how to finance it. Last year, Colorado residents rejected a ballot measure that would have used payroll taxes to fund a near universal coverage system.
In California, voters rejected a ballot initiative in 1994 that would have established a government-run universal health program. Gov. Arnold Schwarzenegger later vetoed two bills that would have accomplished the same goal.
It's difficult to create consensus on single-payer plans because they dramatically shift how health care is delivered and paid for, said Larry Levitt, a senior vice president at the Kaiser Family Foundation (California Healthline is produced by Kaiser Health News, an editorially-independent program of the foundation.)
"Single-payer plans have lots of appeal in their simplicity and ability to control costs," Levitt said. "But what I think has always held back a move to single-payer is the disruption they create in financing and delivery of care."
The problem, Levitt said, is that even if they end up costing less overall, single-payer plans look to the public like a "very big tax increase."
The California Nurses Association, the primary sponsor of the new bill, is planning a rally in Sacramento this week in support of a single-payer system. Bonnie Castillo, the group's associate executive director, said the goal is to create a system that doesn't exclude anyone and helps relieve patients' financial burdens.
"Patients and their families are suffering as a result of having very high co-pay and premium costs," she said. "They are having to make gut-wrenching decisions whether they go to the doctor or they stick it out and see if they get better on their own."
Castillo said that with so much uncertainty at the national level, California has the ability to create a better system. "We think we can get this right," she said.
Charles Bacchi, president and CEO of the California Association of Health Plans, said he hadn't yet seen the bill, but the trade group has opposed single-payer proposals in the past.
"It's hard to tell until you know the details," Bacchi said. "But past studies have shown [single-payer systems] are incredibly expensive and would be disruptive."
He said health plans, doctors, hospitals and others are "laser-focused on protecting and enhancing the gains we have made in coverage" under the Affordable Care Act and ensuring that California continues to receive critical funding. "We think that's where the focus should be," he said.
One possible concept of a single-payer system in California would be to bring together funding from several sources under one state umbrella: Medi-Cal, which covers the poor; Medicare, the federal program that covers older adults, and private insurance.
Lara said he has not yet figured out the financing, saying that it is still early in the legislative process. But he said that even as California continues to defend the Affordable Care Act, it is time to put forward an alternative.
"I think we've reached a tipping point now that we haven't had before," he said.
Aetna will stop requiring doctors seek approval before prescribing particular medications―such as Suboxone―that are used to mitigate withdrawal symptoms.
Aetna, one of the nation's largest insurance companies, will remove a key barrier for patients seeking medication to treat opioid addiction. The change will take effect in March and apply to commercial plans, a company spokeswoman confirmed, and will make it the third major insurer to make the switch.
Specifically, Aetna will stop requiring doctors seek approval before prescribing particular medications ― such as Suboxone ― that are used to mitigate withdrawal symptoms, and typically given along with steady counseling. The insurance practice, called "prior authorization," can result in delays of hours to days in getting a prescription filled.
The change comes as addiction to opioids, which include heavy-duty painkillers and heroin, still sweeps the country. More than 33,000 people died from overdosing on these drugs in 2015, the most recent year for which statistics are available. And it puts Aetna in the company of Anthem and Cigna, which both recently dropped the prior authorization requirement for privately insured patients across the country. Anthem made the switch in January and Cigna this past fall.
Both companies took the step after facing investigation with New York's attorney general, whose office was probing whether their coverage practices unfairly barred patients from needed treatment. They made this adjustment as part of larger settlements.
It sounds like just a technicality ― a brief delay before treatment. But addiction specialists say this red tape puts people's ability to get well at risk. It gives them a window of time to change their minds or go into withdrawal symptoms, causing them to relapse.
"If someone shows up in your office and says, 'I'm ready,' and you can make it happen right then and there ― that's great. If you say, 'Come back tomorrow, or Thursday, or next week,' there's a good chance they're not coming back," said Josiah Rich, a professor of medicine and epidemiology at Brown University and doctor at Providence-based Miriam Hospital, who frequently treats patients with opioid addictions. "Those windows of opportunity present themselves. But they open and close."
As these major carriers drop the requirement, treatment specialists hope a trend could be emerging in which these addiction meds become more easily available. In New York, for instance, the attorney general's office will be following up with other carriers who still have prior authorization requirements, an office spokesperson said. The office would not specify which carriers it will next examine.
Meanwhile, though little research pinpoints precisely how widespread this coverage practice is for drugs that treat opioid addiction, experts say it's a fairly common practice.
"Just think of any big health insurance company that hasn't recently announced they're doing away with this, and it's a pretty safe bet they've got prior authorization in place," said Andrew Kolodny, a Brandeis University senior scientist and the executive director of Physicians for Responsible Opioid Prescribing, an advocacy group.
How does the problem manifest? Take Boston Medical Center, located in a region that's been particularly hard hit by opioid addiction. Doctors there wanted to launch an urgent care center focused on this patient population. Less than a year old, the program's treated thousands of people.
But prior authorization requirements have been intense, said Traci Green, an associate professor at Boston University's School of Medicine and deputy director of the hospital's injury prevention center. To help people get needed care ― before it was too late ― the center hired a staffer devoted specifically to filling out all the related insurance paperwork.
"It was like, 'This is insanity,'" Green said, adding that "navigating the insurance was a huge problem" for almost every patient.
But defenders of the requirement maintain that such controls have value. Insurance plans using prior authorization may view it as a safeguard when prescribing a potentially dangerous drug. "[It's] not a tool to limit access. It's a tool to ensure patients get the right care," said Susan Cantrell, CEO of the Academy of Managed Care Pharmacy, a trade group.
Other large insurance carriers ― such as United Healthcare and Humana ― list on their drug formularies a prior authorization requirement for at least some if not all versions of anti-addiction medication. A spokesperson from Humana said the practice is used "to ensure appropriate use."
Also, though, it is generally agreed that the practice is used to control the prescribing of expensive medications. Per dose, the cost of these drugs varies based on brand and precise formulation, but it can go as high as almost $500 for a 60-pack dose, which can last a month.
Regardless of intent, critics say, those extra forms and hoops do make it more difficult for patients in need to get these medications ― ultimately, they say, doing more harm than good.
"If you would like a physician to not do a particular treatment, put a prior authorization in front of it," Rich said. "That's what they're used for."
Meanwhile, addiction treatment advocates and health professionals are hoping to build on what they see as new momentum.
Earlier this month, the American Medical Association sent a letter to the National Association of Attorneys General, calling for increased attention to insurance plans that require prior authorization for Suboxone or other similar drugs.
Minnesota's attorney general has written to health plans in the state, asking they end prior authorization for addiction treatment. New York has also heard from other states interested in tackling the issue, the attorney general spokesperson said. And another project, called Parity Track, is soliciting complaints from consumers.
They're arguing based on a requirement that insurance plans, thanks to so-called "parity laws," must cover addiction treatment, and cover it at the same level as they do other kinds of health care.
The prior authorization requirement "doesn't meet the sniff test for parity," said Corey Waller, an emergency physician who chairs the American Society of Addiction Medicine's legislative advocacy committee. "It's a first-line, Food and Drug Administration-approved therapy for a disease with a known mortality. Every other disease with a known mortality ― the first-line drugs are available right away."
But the justification for legal cases like New York's could get weaker. The 2010 health law, which lawmakers are working to repeal, included requirements that mental health and addiction treatment be considered an "essential health benefit." If that disappears, robust coverage for addiction could be less widely available, several noted.
Meanwhile, the stakes are substantial, Rich said. He recalled a patient who was taking a version of buprenorphine ― the active ingredient in Suboxone ― who had a brief relapse with heroin. That led to complications in the paperwork for renewing his prescription for treatment.
"Now he's out of the office, in the street, using more," Rich said of that case. "Incumbent upon [effective treatment] is the ability to get people started right away. If there's prior authorization? It's infuriating."