When 28-year-old Charis Hill discovered that the cost of medication to treat her degenerative arthritis had risen to $2,000 a month, she chose to be in pain instead.

“I felt like an invalid,” said Hill, who lives in Sacramento and at the time had only catastrophic health coverage. She said the month without the medicine made it hard to get out of bed.

Paying for drugs isn’t a problem for Hill now. She has a more robust Covered California health plan, and she gets assistance from a drug company.

As of the first of this year, she won’t have to worry about sticker shock if she switches medications either. All Covered California plans now have a cap on how much patients pay for drugs: $250 a month in silver, gold and platinum plans; $500 a month in bronze plans, the least expensive ones.

“I could try a better treatment,” said Hill, a patient advocate, who says she is exploring that because her symptoms are becoming more severe. “The $250 is something I know that I can always fall back on.”

The copay cap on drugs is just one way Covered California chose to shape the health insurance marketplace this year. The California exchange uses more of its purchasing power to get what it wants than the vast majority of exchanges in other states. That means it decides which insurers can join the exchange, what plans and benefits are available and at what price.

The federal government — in proposed rules for 2017 — has signaled it too wants to have more of a hand in crafting plans. Though there are no hints HealthCare.gov will go as far as a monthly drug copay cap, it would be forging ahead on a path California already blazed — swapping variety for simplicity in plan design.

“Not letting [health] plans define what’s right for consumers, but defining it on behalf of consumers … is a better model for the market,” says Peter Lee, executive director of Covered California. “We want to make sure every consumer has good choice but not infinite choice.”

Most other states, including those in the federal exchange, haven’t subscribed to that idea so far. They have a clearinghouse model, in which all health insurers and plan designs are accepted as long they comply with the Affordable Care Act. That can mean the same insurer offers multiple plans with slightly different premiums, deductibles and copays. Even within one metal tier, say silver, the same insurer might offer half a dozen slightly different plans. (Obamacare plans come in four tiers, from bronze, with the most limited benefits, to platinum, with the most.)

Now, the federal government proposes to create standard cost-sharing designs in various metal tiers and make them easily accessible on HealthCare.gov. And it’s considering how to improve value by being more selective about plans.

A simplified marketplace, the feds say, will make it easier to choose high-quality health insurance.

“Many consumers … find the large variety of cost-sharing structures available on the Exchanges difficult to navigate,” the proposed rules say. “We believe that standardized options will provide these consumers the opportunity to make simpler comparisons.”

The proposal signals a big change.

“Up until now the federal marketplace has really taken a hands-off approach” in shaping the marketplace, said Sabrina Corlette, research professor at Georgetown University’s Center on Health Insurance Reforms. “The new proposed rule says ‘You know what? We actually are going to become more of an active purchaser.'”

California’s Approach

Covered California holds insurers to a higher bar than what’s required under the Affordable Care Act. It negotiates premium prices down and requires quality goals to be met. Health plans must participate in health-disparity workgroups, collect information about enrollees’ health status and monitor rates of preventive health services use. In the first two years, California’s exchange rejected multiple health insurance carriers.

Covered California says it’s the only exchange in the country that requires all plans to be standardized (not just some, which the federal government is proposing). All gold tier plans, for instance, have the same costs for lab tests, doctors’ visits and deductibles.

“There was always a suspicion like, ‘Oh, is that plan $80 more a month because it covers more?'” said Anthony Wright, of the advocacy group, Health Access. “And it was almost impossible to know. Whereas now people know ‘Okay, these are basically the same plans.'”

Price negotiations with insurers have paid off, according to Covered California. During 2016 plan year negotiations, insurers reduced premiums by 1 percent to 9 percent, said Lee. The exchange says this will result in $200 million in savings for premium payers and taxpayers this year.

Covered California average premium increases have been on par with the increases in other states, according to the private health care consulting firm, Avalere Health. It says this year’s 4 percent overall average increase was particularly low in comparison.

But national researchers say the downward pressure on premiums may be more indicative of competition than the exchange’s negotiating power.

An Industry Partner?

Health insurers in California acknowledge there’s more red tape if they sell in the subsidized marketplace there, but surprisingly, they don’t complain.

In fact, a California insurance trade group says it sees the exchange as a partner, and active purchasing as valuable for establishing ground rules.

“So far in California, it has worked,” said Charles Bacchi, president and CEO of the California Association of Health Plans.

The rules allowed new plans to get into the individual market, he says, and provided “more security in knowing what the playing field was.”

At the same time, Bacchi said, health plans don’t always agree with the exchange’s decisions.

“There is give and take,” he said.

Blue Shield of California, which in 2015 had 25 percent of the exchange’s enrollment, says it’s very happy with its relationship with Covered California.

Applying to sell through Covered California creates “different work” than was required before, said Ken Wood, Senior Vice President of Consumer Markets at Blue Shield of California, adding that he applauds its approach. But the business is worth it, he said. Covered California gives insurers access to more than a million consumers, whose monthly premiums are largely subsidized by government.

And “the standard benefits is an enormous simplification for consumers,” he said.

But one of two health insurance regulators in California, the state Department of Insurance, said Covered California’s strict guidelines may not benefit consumers.

It has created a situation in which the exchange “has fewer carriers than would otherwise be the case,” said Janice Rocco, deputy commissioner of the California Department of Insurance.

More insurers in the marketplace for the first two years would have had an impact on price in the long term, said Rocco.

Closely Watching California

Federal administrators may be trying to adopt active purchasing rules before the new presidential administration takes office, said Corlette, and California’s example may make it more politically feasible.

“There’s no question that the feds are closely watching the California experience,” said Corlette, commenting on Covered California’s ability to keep insurers in the marketplace and hold down premiums.

The federal rules also name other active purchasing exchanges as models however, including New York, Massachusetts and other state-based exchanges.

Health insurers on a national level are “strongly” opposed to an active purchaser model for states served by HealthCare.gov, including standardized benefits.

“It could discourage many from enrolling if they can’t find a policy that works best for them,” said Clare Krusing from America’s Health Insurance Plans.

“Where there is competition and choice is where consumers benefit and where health plans benefit,” said Krusing.

Researchers raise other logistical and market concerns. Caroline Pearson, senior vice president of Avalere Health, said the risk of losing insurers under active purchasing is “significant.”

“Right now the federal government needs to focus on increasing enrollment and maintaining plan participation,” said Pearson.

Streamlining benefits like medical service copays could get tricky when spanning across more than 30 states with different economies, said Corlette.

What Consumers Say

Not all of Covered California’s actions have been met with applause. Consumer advocates say they’re still concerned about the high deductible in Covered California’s Bronze plans, an amount the exchange chose to raise for 2016 plans. But at the same time, advocates appreciate that policy decisions aren’t being made in the “back room of an insurance company.”

“Covered California has put itself apart from other states in that it is willing to be aggressive and do what’s right,” said arthritis patient and advocate Charis Hill.

She said she’s glad Covered California reminds insurance companies that they exist to serve patients: “If they’re not doing their job, then somebody’s going to step in.”

A version of this story first appeared on Kaiser Health News. Pauline Bartolone is a reporter for CALmatters, a nonprofit, nonpartisan media venture explaining California’s policies and politics.

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Law enforcement officials would love to have a clear way to tell when a driver is too drugged to drive. But the decades of experience the country has in setting limits for alcohol have turned out to be rather useless so far because the mind-altering compound in cannabis, THC, dissolves in fat, whereas alcohol dissolves in water.

And that changes everything. “It’s really difficult to document drugged driving in a relevant way,” says Margaret Haney, a neurobiologist at Columbia University, “[because of] the simple fact that THC is fat soluble. That makes it absorbed in a very different way and much more difficult to relate behavior to, say, [blood] levels of THC or develop a breathalyzer.”

When you drink, alcohol spreads through your saliva and breath. It evenly saturates your lungs and blood. Measuring the volume of alcohol in one part of your body can predictably tell you how much is in any other part of your body — like how much is affecting your brain at any given time.

That made it possible to do the science on alcohol and crash risk back in the mid-20th century. Eventually, decades of study helped formulate the 0.08 blood alcohol limit as too drunk to drive safely. “The 0.08 standard in alcohol is from decades of careful epidemiological research,” says Andrea Roth, a professor of law at the University of California, Berkeley.

But marijuana isn’t like that. The height of your intoxication isn’t at the moment when blood THC levels peak, and the high doesn’t rise and fall uniformly based on how much THC leaves and enters your bodily fluids, says Marilyn Huestis, who headed the chemistry and drug metabolism section at the National Institute on Drug Abuse.

Because THC is fat soluble, it moves readily from water environments, like blood, to fatty environments. Fatty tissues act like sponges for the THC, Huestis says. “And the brain is a very fatty tissue. It’s been proven you can still measure THC in the brain even if it’s no longer measurable in the blood.”

From her research, Huestis found that THC rapidly clears out of the blood in occasional users within a couple of hours. While they’re still high, a trickle of THC leaches out of their brains and other fatty tissues back into the blood until it’s all gone.

That means a lab test would only find a trace amount of THC in the blood of occasional smokers after a few hours. “You could have smoked a good amount, just waited two hours, still be pretty intoxicated and yet pass the drug test [for driving],” says Haney.

And if you eat the weed instead of smoking it, Haney says, your blood never carries that much THC. “With oral THC, it takes several hours for [blood THC] to peak, but it remains very low compared to the smoked route, even though they’re very high. It’s a hundredfold difference,” she says.

But daily users are different. Huestis says that heavy smokers build up so much THC in their body fat that it could continue leaching out for weeks after they last smoked. These chronic, frequent users will also experience a rapid loss of THC from their blood after smoking, but they will also have a constant, moderate level of blood THC even when they’re not high, Huestis says.

It gets trickier when you try to factor in the chronic effect of smoking weed, Huestis says. “We found [chronic, frequent smokers’] brains had changed and reduced the density of cannabinoid receptors,” she says. They were cognitively impaired for up to 28 days after their last use, and their driving might also still be impaired for that long. “It’s pretty scary,” she says.

The attitude difference between stoned drivers and alcohol drivers seems clear, Huestis says. Pot smokers, she says, “tend to be more aware they’re impaired than alcohol users.” Drunk drivers are more aggressive, and high drivers are slower. But in her studies, she found that being blazed enough, as when a smoker’s blood THC level peaks at 13 nanograms per milliliter, could be just as a dangerous as driving drunk. The marijuana advocacy group NORML emphasizes that driving high can be dangerous, and advises people to drive sober.

This all translates into a colossal headache for researchers and lawmakers alike. While scientists continue to bang their heads over how to draw up a biological measurement for marijuana intoxication, legislators want a way to quickly identify and penalize people who are too high to drive.

The instinct, Huestis says, is to come up with a law that parallels the 0.08 BAC standard for alcohol. “Everyone is looking for one number,” she says. “And it’s almost impossible to come up with one number. Occasional users can be very impaired at one microgram per liter, and chronic, frequent smokers will be over one microgram per liter maybe for weeks.”

The shaky science around relating blood THC to driving impairment is unfair for people living in marijuana-legal states that have absolute blood THC limits for driving, says Andrea Roth, a professor of law at the University of California, Berkeley.

In states like Washington, if a driver is found to have over 5 nanograms of THC per milliliter in their blood, they automatically get a DUI-cannabis. “If we are going to criminalize DUI marijuana, we need to take information from scientific studies and use it to decide if that risk is sufficiently high to be so morally blameworthy that we call it a crime. But we don’t, so picking 5 nanograms per milliliter is arbitrary,” Roth says.

The complicated biology of THC makes current DUI cases very tricky.

“Blood isn’t taken in the U.S. until 1.5 to four hours after the [traffic] incident,” Huestis says. By then, THC levels would have fallen significantly, and these people might have been impaired but passed the test. At the same time, a heavy user living in a state like Washington would get a DUI even if she or he hadn’t smoked in weeks.

As a result, it gets difficult to even understand how risky blazed driving is. Traffic studies that rely on blood THC measures could also be inaccurate if blood is drawn too late and THC has already left the system. And some state traffic databases, including Colorado’s, according to state traffic officials, link accidents to 11-nor-9-carboxy-THC, a byproduct of marijuana metabolism that marks only recent exposure and not intoxication. That might result in an overestimation of marijuana-related accidents.

In the meantime, Haney says, the challenge shouldn’t deter people from trying to find a marijuana DUI solution. People are working on breath tests, saliva, other blood markers and behavioral tests, just nothing that so far has stuck, she says. “We need something, because it’s an important public health issue. But how we’re going to get there? I just don’t know.”

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There’s never a shortage of questions about the twists and turns of health coverage. Here are answers to recent questions from readers about premium tax credit repayments for marketplace plans, out-of-network emergency care and nursing home bills.

While doing my taxes I discovered that I made more money in 2015 than I anticipated. I was forced to take money out of my 401(k) to make ends meet during the year and that raised my income level. Now I face having to pay back $1,500 for premium tax credits I received to subsidize my marketplace plan’s premiums. What am I supposed to do?

It’s not uncommon for people to fail to count one-time income bumps from retirement savings or other sources when they’re estimating their annual income to qualify for advance premium tax credits for marketplace coverage, said Tara Straw, a senior policy analyst at the Center on Budget and Policy Priorities.

In the case of retirement savings, “they’re not thinking of it as income because it’s their own money,” she said. But since retirement money is generally deposited on a pretax basis, it counts as income when it’s withdrawn and can affect how much people qualify for in premium tax credits.

It’s important to go back to the marketplace and report any income changes, including one-time changes, as soon as they occur to minimize repayment problems down the road, Straw said.

About half of people who received advance premium tax credits in 2014 got too much, the Internal Revenue Service reported, based on the tax forms people filed to reconcile how much they received against how much they should have gotten.

The amount that people have to repay is capped for those whose income is less than 400 percent of the federal poverty level (about $47,000 for one person).

“The repayment caps are really helpful in cases like this when something unexpected occurs or where an error was made,” Straw said. However, taxpayers can still be on the hook for significant amounts, up to $1,250 for single taxpayers and $2,500 for couples and families, she said.

If you can’t pay what you owe right away, the IRS will allow you to pay in installments, but there may be additional fees and interest charges.

I had an incident where a big metal trash can lid fell on my hand. I thought it was broken. I went to the nearest hospital emergency room, and they took an X-ray. I just had a bad bruise. They sent me home, and later I got a bill of more than $800. My insurance company had covered some of the costs but I was responsible for the rest because I was “out of network”! How can this happen with emergency care?

Federal law prohibits emergency departments from turning anyone away, but that doesn’t mean your insurer will pick up the whole tab for your care, especially if the hospital isn’t in your insurance network.

The health law helps prevent you from getting stuck with a big bill for out-of-network emergency care by prohibiting insurers from charging you higher copays or coinsurance for care received at an out-of-network emergency department than the rates you would pay for in-network emergency care.

But the law doesn’t prohibit hospitals and doctors from billing patients for amounts that the insurer doesn’t pay. These “balance bills” are not uncommon when people get out-of-network care because there’s no contract in place that spells out how much the providers agree to accept as payment in full from the insurer.

If that’s the case, you can ask the hospital to accept the amount that it’s already been paid by the insurer as payment in full, said Dr. Jeffrey Bettinger, chair of the task force on alternative payment models at the American College of Emergency Physicians.

“Many hospitals or provider groups will make an allowance for something like that,” Bettinger said.

That may not solve your problem, however. If your plan has a big deductible that you haven’t met for the year, you may still have to pay up to that out of pocket.

“Whether it’s in network or out of network, if you have a $3,000 deductible you may have to pay that bill,” Bettinger said.

Should we receive a detailed list of services from our nursing home when we receive our bill each month? Or should we accept the flat fee we are charged without any itemized listing?

Private-pay nursing home patients typically pay a monthly charge, and if something is required outside that charge the resident may get an itemized bill, said Judi Lund Person, vice president for regulatory matters and compliance at the National Hospice And Palliative Care Organization.

If the nursing home charges a flat fee and you’re unclear whether it includes ancillary services and equipment such as walkers or oxygen, check the agreement that you signed when you placed your parent or loved one in the facility, said Gary Kelso, president and CEO of Mission Health Services, a chain of eight nonprofit nursing homes in Utah and Wyoming. It should be spelled out there.

“Everyone signs an agreement that has a list of things that are included and those that are excluded,” Kelso said.

If the facility provides an all-inclusive bill, you may not be able to get a break-out of specific services or supplies, Kelso said, because the nursing home may not track those items individually.

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

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At 46 years old, Oliver Bogler’s reaction to a suspicious lump in his chest might seem typical for a man. He ignored it for three to four months, maybe longer. “I couldn’t really imagine I would have this disease,” Bogler says. But when he finally “grew up” and went to the doctor, he was pretty quickly diagnosed with invasive breast cancer.

Now what’s interesting here is that Bogler is a cancer biologist who regularly works with cancer cells, as senior vice president of academic affairs at the University of Texas MD Anderson Cancer Center in Houston. Even so, he figured the lump was a benign swelling of breast tissue.

And he had good reason to think so. Breast cancer is rare among men. Only 1 percent of all breast cancer cases are in men. Still, that means about 2,600 men receive a diagnosis of breast cancer every year.

But men typically don’t think they are at risk, says Dr. Sharon Giordano, an oncologist who also works at the MD Anderson Cancer Center. “Men don’t think of themselves as having breasts,” Giordano says. “They don’t realize that all men have some residual breast tissue.” So it’s not unusual to see male patients like Bogler who come to her with more advanced breast cancer than the typical female patient.

This could be one reason why men have a lower life expectancy after a breast cancer diagnosis. According to a study published in 2012, in the Annals of Surgical Oncology, men with early breast cancer had a 74 percent survival rate five years after their diagnosis compared to women, whose survival rate was 83 percent.

And men not only can get breast cancer, they can also inherit the BRCA1 and 2 genetic mutations which places them at greater risk. Like women, they can pass that mutation on to their children, who have a 50 percent chance of inheriting a parent’s mutation.

Once men are diagnosed their treatment is pretty much the same as it is for women — typically surgery to remove the cancer followed by chemotherapy, radiation and hormone suppressing medication like tamoxifen.

That was the case for Bogler, but with one big difference — he had a mastectomy. Most women choose lumpectomies followed by radiation. This is often not an option for men, Giordano says, because their tumors are most commonly right behind the nipple where there’s not a lot of breast tissue to remove.

Unlike women, most men don’t have reconstructive surgery. That’s probably because they don’t even know it’s an option, says Giordano. A lot of male patients would probably be interested in having nipple reconstructive surgery, Giordano says, “So when they are out swimming, or playing basketball and have their shirt off, the surgical changes aren’t quite so obvious.”

And because breast cancer is so much more common among women, men with the disease can experience something of a ‘gender misfit.’ Bogler wrote about his experience in a personal blog he called Entering a World of Pink. Breast cancer clinics are often decorated in lots of pink and support systems are designed with women in mind. After a biopsy, Giordano recalls one male patient who was given a pink floral ice pack with instructions to, “place it inside your bra.”

When Edward Smith was diagnosed about four years ago, he went online to look for information and emotional support. The first couple of chat rooms he joined were not helpful, he says, when the participants found out he was a man. “They weren’t outright nasty or anything, but you could just feel that they were pulling back in terms of the conversation that was going on at the time,” he says.

Eventually Smith found a site that was welcoming — Living Beyond Breast Cancer. The women in this group were helpful, compassionate and willing to talk, Smith says. This was important because he was feeling a bit uncomfortable at work. Colleagues were just “stupefied” he says, “because most people have never encountered a male who had breast cancer.”

The website recently published a guide for men. which Smith found particularly helpful. The medical information isn’t so different from women, says Jean Sachs, executive director of Living Beyond Breast Cancer, but the experience is very different. “It’s hard to get men to talk about it,” she says. The guide provides a list of men, including Smith, who are willing to talk to other men about their experience.

It’s also important, Sachs says, for men who test positive for the BRACA genetic mutations to understand that they can pass those mutations on to their children, which may encourage newly diagnosed patients to get tested.

The lack of awareness, even among doctors, oncologist Giordano says, means less money for needed research to figure out how breast cancer in men differs from women especially when it comes to life saving treatment. Treatments for men are based on evidence from research trials with women. Giordano’s now heading up research to better understand the biology of the disease in men and to try to figure out the most effective hormone therapy for men with breast cancer.

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Nearly six years after its enactment, the Affordable Care Act remains a hot issue in the presidential race – in both parties.

“Our health care is a horror show,” said GOP candidate Donald Trump at the Republican debate in South Carolina in December. Texas Sen. Ted Cruz, winner of the Iowa caucuses, said at the debate in Des Moines that the health law has been “a disaster,” adding it’s “the biggest job-killer in our country.”

Democrats largely support the law, but even they can’t agree on how to fix its problems. Hillary Clinton said at the Jan. 25 town hall on CNN that she wants to “build on the ACA. Get costs down, but improve it, get to 100 percent coverage.”

Clinton’s rival for the nomination, Vermont Sen. Bernie Sanders, acknowledged that “the Affordable Care Act has done a lot of good things,” but added that “the United States today is the only major country on earth that doesn’t guarantee health care to all people as a right.” Sanders is pushing a government-run “Medicare for All” plan instead.

In some cases candidates are bending the truth. But praise and criticisms of the law can be accurate. That’s because the health law is so big and sweeping that it has had effects both positive and negative.

Here is a brief guide to some things the health law has – and has not – accomplished since it was signed by President Barack Obama in 2010.

CLAIM: The law has increased the number of people with health insurance coverage.

This is true, no matter what measure you use. The Census Bureau and polling firm Gallup both found substantial drops in the percentage of people without health insurance after the majority of the law’s coverage expansions took effect in 2014.

COUNTER-CLAIM: There are still millions of Americans who don’t have insurance.

This is also true. Even though approximately 90 percent of Americans now have insurance, that remaining 10 percent amounts to more than 30 million people.

Millions aren’t eligible for coverage under the law because they’re not in the U.S. legally. Another 3 million are in the so-called Medicaid gap, meaning they would be eligible for Medicaid under the ACA except their states opted not to accept the expansion after the Supreme Court effectively ruled the expansion optional.

Still others are eligible to purchase coverage on a health insurance exchange, but either can’t afford it, don’t think the insurance available offers a good value, or don’t know they are legally required to obtain it. An estimated 7.5 million Americans paid a fine to the IRS for failing to get covered in 2014; millions more were exempt from the requirement and didn’t have coverage.

In recognition of the fact that enrollment has been smaller than expected, the Congressional Budget Office recently lowered its projections for those who will buy insurance under the law from 21 million to 13 million in 2016.

CLAIM: The ACA has fixed the dysfunctional individual insurance market.

Prior to the passage of the health law, millions of people who didn’t have work-based or government coverage were shut out of buying their own insurance because they had been sick or because the coverage offered did not cover the services they needed.

The law aimed to address the problems in the individual market in several ways, including requiring insurers to sell to those with preexisting conditions at the same price as healthier people; standardizing the benefits package; and limiting the size of deductibles. Tax credits were made available in order to help people afford coverage. And the law created insurance exchanges intended to help consumers compare, choose, sign up and pay for health insurance.

How well these changes succeeded in stabilizing the market isn’t clear. What is clear is that more people are now insured through the market.

COUNTER-CLAIM: The ACA has made the individual market worse.

All is not well in the individual market. Even with help paying premiums, many moderate-income Americans are finding that their deductibles and copayments are so high they cannot afford to use their insurance.

In other cases, individuals can get insurance they can afford to use, but it doesn’t include their regular doctors and hospitals. In fact, plans that do offer coverage outside of the insurer’s network are becoming harder to find and more expensive.

That change affected Cruz, who initially claimed his private insurance had been cancelled. In fact, his insurer had stopped offering his broad-choice plan and automatically transferred him to a narrow-network product.

CLAIM: The ACA has improved the Medicare program.

While most of the law was aimed at those without insurance, lawmakers also took the opportunity to beef up some benefits for the 55 million Americans in the Medicare program.

Medicare enrollees got new coverage for preventive services and annual checkups, and those with high prescription drug expenses got help to fill the “doughnut hole” gap left by the 2003 Medicare drug program.

Over the longer term, the law created several payment experiments intended to improve the quality of care Medicare patients receive and lower costs. These include efforts to prevent patients from going back to the hospital after they’ve been discharged.

COUNTER-CLAIM: The ACA has not saved money for Medicare.

The rate of increase in Medicare spending has slowed since the health law was passed in 2010. But it’s not clear how much of that can be attributed to the law, aside from some provisions that actually cut payments to hospitals and other health providers.

And some of the most highly anticipated projects, including accountable care organizations that are paid bonuses for keeping Medicare patients healthy and lowering spending, have not so far shown very good results.

CLAIM: The ACA has killed jobs.

One of Republicans’ favorite talking points – that the health law would depress employment – has turned out not to be the case.

An analysis in 2015 by the Urban Institute found that the health law “had virtually no adverse effect on labor force participation; employment; the probability of part-time work; and hours worked per week by nonelderly adults.”

While there would be fewer people in the workforce due to the law, the Congressional Budget Office found in 2014 that “almost entirely” stems from voluntary actions by workers who could quit because they no longer depended on their jobs for insurance — now they could buy it on their own.

CLAIM: The ACA has slowed overall health spending.

The White House trumpeted the fact that health spending grew at its slowest rates ever between 2010 and 2013. But health policy analysts are still engaged in a lively debate about how much of the slowdown was attributable to the recession, to the health law and to other changes in the health care system.

Meanwhile, the rate of spending has begun to accelerate again, jumping from a 2.9 percent increase in 2013 to 5.3 percent in 2014. That has occurred as millions more Americans gained access to health care through the law.

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

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The cystic fibrosis drug Orkambi can help people with specific genetic mutations breathe better, but treatment with the pill comes with a hefty sticker price — $259,000 a year.

Orkambi, which was approved by the Food and Drug Administration last July, is expected to take almost $36 million from California’s general fund this fiscal year and next. That cost estimate doesn’t include any discounts the state may receive from drug manufacturers.

Seventy-four Californians with health coverage under the Department of Health Care Services are expected to receive the drug in the current fiscal year. In the next one, 220 people are expected to get it, some of whom may be the same patients as this year.

Orkambi is listed on the specialty tier of drug categories in some private health plans. That category is typically reserved for high-cost drugs or, in the federal government’s view, for drugs that cost more than $600 a month and are used by a small proportion of patients.

Specialty drugs are already proving to be a financial burden on one California agency, the California Public Employees’ Retirement System, which purchases health benefits for active and retired state workers. CalPERS says that specialty drugs made up less than 1 percent of all prescriptions for its members but accounted for 30 percent of the total drug costs in 2014.

Drugmakers say the health benefits from specialty drugs justify their cost.
“Patients are gaining access to medicines that are better treating their diseases or frankly even curing them,” said Priscilla VanderVeer, deputy vice president of communications at the Pharmaceutical Research and Manufacturers of America. “Patients are now healthier. They’re more productive. They’re functioning.”

VanderVeer said companies price drugs not just on the cost of production, but on the value the industry believes the drug brings to the health care system, such as efficacy, improvements in quality of life or length of life and the extent to which the medical need for a drug has gone unmet.

The price of the drug also accounts for the cost of developing other drugs and the high risk that a particular drug won’t make it to market, VanderVeer said. Only 12 percent of drugs that go through clinical trials get approved, according to PhRMA.

Finally, she said, the sticker price doesn’t reflect the final price paid for the drug, which can be heavily discounted through negotiations or because of mandated rebates for Medicaid programs.

Drugmakers are following the money, said Joel Hay, professor of pharmaceutical economics and policy at University of Southern California. Companies invest in specialty drugs that target a small population because their high price tags can be spread over a large insurance pool, he said.

Even though specialty drugs are “ridiculously expensive per treatment episode,” Hay said, the cost for each member in a health plan is “just a few cents.” Raising the price 10 cents on a diabetes drug, for example, would have a bigger budget impact, he said, because more people have diabetes than cystic fibrosis.

Hay says manufacturers are now less inclined to invest in drugs that treat millions of people, because there is more pushback on price. “Drug companies are for-profit companies obligated to make money for their stockholders,” Hay said. “They’re not virtuous charitable organizations.”

Drugmakers are also investing more in treating uncommon illnesses because there is less competition and therefore more opportunity for profit, said Dr. Helene Lipton, professor of health policy at the School of Pharmacy and Institute for Health Policy Studies at the University of California, San Francisco.

The high price of the drugs affects patients, she noted, because health plans put controls on the drugs so that they’re used as a last resort.

“That may mean going through two or more rounds of care with other medications before being able to use the specialty drug,” Lipton said.

Still, it’s not just specialty drugs that are straining health plans’ budgets, said Steve Miller, chief medical officer at Express Scripts, a pharmaceutical benefits manager that negotiates drug coverage for 7.5 million Californians.

“The price of drugs is just continuing to go up,” said Miller, explaining that the trend is due to both new high-cost drugs coming on the market, and mark-ups of old drugs.

There has been an explosion of drugs costing $100,000 a year over the past decade, for things like cystic fibrosis and cancer, Miller said. And there was a 127 percent price increase of branded drugs that had been on the market between 2008 and 2014, he says.

A California ballot initiative scheduled to go before voters this November aims to rein in drug costs by limiting the amount the state pays for a drug to no more than the lowest price paid for the same drug by the U.S. Department of Veterans Affairs.

A version of this story appeared first on KQED’s State of Health blog. CALmatters is a nonprofit journalism venture dedicated to explaining state policies and politics. Pauline Bartolone wrote this article while participating in the California Data Fellowship, a program of the Center for Health Journalism at USC’s Annenberg School of Journalism.

Barolone will be exploring how the cost of specialty drugs’ affects patient access. If you are a chronic disease patient who is either taking a specialty drug or having difficulty getting the right one, she would like to hear from you. Reach her on Twitter @pbartolone or pauline@calmatters.org.

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For the past two years, Joseph Richardson has been trying to figure out how to keep young black men with knife and gunshot wounds from turning up again with similar injuries at Prince George’s Hospital Trauma Center outside Washington, D.C.

When these men are admitted, Richardson, director of the Violence Intervention Research Project at the trauma center, shows up at their rooms to ask them to take part in his ongoing study on risk factors for repeat violent injuries. Sometimes he finds them handcuffed to a hospital bed, guarded by a police officer or two. Richardson has to walk away. The patients are under arrest and off-limits to him.

Recently, in the context of a national discussion about police violence, Richardson, a criminologist and associate professor at the University of Maryland, got to thinking about the lack of access that kept him from asking these men what happened. How many of those handcuffed shooting victims had taken a bullet from a cop, he wondered?

With scant data on how many people are shot by police across the country every year, Richardson sees potential in hospital emergency departments. As a researcher he might not have direct access to patients under arrest, but the doctors and nurses certainly do. He’s proposing that emergency departments step in and capitalize on that unique access to compile an alternative data source.

Doctors And Nurses Could Ask: “Who Shot You?”

Richardson views police violence as a public health issue and believes health care providers have a role to play in addressing it. The concept seems simple: At some point during a patient’s visit, emergency department staffers ask patients who shot them, record their answers, and report the information to state health departments and the Centers for Disease Control and Prevention.

He’s not suggesting doctors and nurses investigate their patients’ claims, or that this self-reported data would even be completely accurate. After all, in quite a few cases it could be impossible to know who shot you.

Even so, Richardson says that some data are better than none. Hospital-reported numbers along with those recorded by police and media outlets could help define the true scope of police shootings.

In December, around the time Richardson floated his idea in the Journal of Urban Health, the FBI announced plans to expand its database on violent police encounters. For the first time, the agency will collect information on serious injuries, not just fatalities. But it will continue to lean on voluntary reports by local police departments.

Richardson is skeptical that the federal government can solve the data problem. “There has to be a more pioneering, innovative approach to doing it,” he says. That’s what he’s trying to figure out. He notes that information about people who survive police shootings is especially elusive. “The only way we would know that is either the police would have to report that or the hospitals would have to,” he says. “Up to this point, neither entity has done it.”

Richardson points to a 2009 survey of academic emergency physicians which found that almost all of them believed they’d seen cases of excessive use of force by police but had largely failed to report them.

In interviews with the emergency department staff at Prince George’s, he found that the overwhelming majority said the hospital has an ethical responsibility to record and report police-involved shootings. But doctors and nurses raised concerns about the logistics and consequences.

Some said it would be difficult to put into practice a standardized approach to collecting the information. Others felt patients weren’t likely to open up to trauma staff — especially given the presence of police anytime a victim is under arrest. Still others worried they’d be dragged into court to testify if they implicated the police.

Can Hospitals Balance Care And Reporting On Shootings?

Logistics aside, what looms over Richardson’s proposal is a philosophical divide over the role of the hospital and its staff.

As American College of Emergency Physicians board member James Augustine sees it, muddling a hospital’s mission is bad for patients. “The hospital is not a good place for legal and law enforcement activities to infringe on people’s rights for health care,” says the veteran emergency medicine doctor. “In the emergency setting, this is not a priority.”

But he doesn’t dismiss the idea outright. The health care system plays a vital role in amassing data, he says. In fact many trauma centers already collect reams of information and submit it to the National Trauma Data Bank. Stripped of names, it’s used to track everything from auto accidents to clothing-related burns. It might be feasible to add information about violent police encounters to those data collection efforts, Augustine says.

David Livingston, chief of trauma at University Hospital in Newark agrees that when it comes to collecting information, hospitals could help. “Emergency departments are the canary in the coal mine of health in our communities,” he says. “They’re a unique public health resource to gather data.”

But there are serious limitations. Two years ago Livingston and his colleagues analyzed over 6,000 gunshot wounds treated at his hospital and found that his own trauma unit’s database didn’t account for nearly 20 percent of them. It turned out the emergency department, not trauma, had handled these relatively minor injuries and Livingston and his co-workers only discovered them when they scoured that department’s billing records.

As for Richardson’s proposal, Livingston says it could work in theory. “Is it economically and logistically feasible?” he asks. “We’d like to think it is, but I have my doubts.” To get the kind of detailed information would probably require dedicated staff, he says, and that’s expensive. But he’s quick to point out that similar data on cancer, heart disease, smoking, obesity and other conditions has been collected, with the National Institutes of Health or the National Science Foundation footing the bill. “In that respect,” he says, “Dr. Richardson’s contention to put this on trauma centers is shirking the government’s responsibility.”

Still, Richardson suggests a place to start: hospital-based violence intervention programs. Only about 30 hospitals in the U.S. have these special programs aimed at curbing readmission for violent crimes, but Richardson sees them as prime candidates for pilot projects.

For University of California, San Francisco trauma surgeon Rochelle Dicker, who heads up the violence intervention program at San Francisco General Hospital, keeping tabs on police violence seems like a natural extension of the work her team already does. “Part of our responsibility as physicians is to not just to do the traditional ‘treat and street,’ but to really get to the issues at hand and address violence in a more comprehensive way.” In order to do that, she says, accurate information is key.

“The work is provocative,” she says of Richardson’s proposal, and it will get people talking. “I applaud the author for taking that first step and opening the door.”

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The Pentagon is launching a pilot program to freeze troops’ sperm or eggs as part of widespread reforms to personnel policies across the force. Defense Secretary Ash Carter says he wants the military to be more family friendly and able to compete for the best talent with private sector employers like those in the world of tech.

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