Expensive specialty medicines used to treat cancer and chronic illnesses have forced some very ill Americans to choose between getting proper treatment and paying their rent.

To ease the financial burden, the California agency that governs the state’s Affordable Care Act marketplace issued landmark rules recently that will limit the amount anyone enrolled in one of those plans can be charged each month for high-end medicine.

The agency said its rules, set to take effect in 2016, “strike a balance between ensuring Covered California consumers can afford the medication they need to treat chronic and life-threatening conditions while keeping premiums affordable for all.”

Mikkel Lawrence, a retired middle school teacher in California, is the kind of patient lawmakers had in mind when they designed the new policy.

Lawrence has hepatitis C, a virus that can damage the liver. Most people who have the virus don’t have any symptoms, sometimes for decades. But for some people like Lawrence, waves of intense fatigue hit several times a day.

Lawrence said he sometimes gets up in the morning, eats breakfast, and then heads straight back to bed for a nap. “I get really bad tired spells. It’s like you have to go to sleep,” he said. “It takes away probably three or four hours of my waking day.”

There’s also an increased risk of liver cancer or liver failure. So when Lawrence heard last year that there was a new drug regimen that could cure his disease, he went straight to his insurance company.

“The first thing they did, of course, was deny it,” Lawrence said.

But the real problem, once he did get approval, was the price tag. Each pill costs $1,000.

“The first quote I got was $140,000 — and I would be responsible for $14,000 of it,” he remembered.

Lawrence, 71, lives on Social Security. There was no way he could come up with $14,000 on his own.

“I went to everybody I knew of and fussed and fumed and all that stuff,” he said.

Eventually, Lawrence got financial aid from a nonprofit to help him cover his out-of-pocket costs. Every morning at 10 a.m., he stood over his bathroom sink and swallowed two capsules.

“I’d go, ‘There’s one thousand. And there’s another thousand,’” he said.

Health advocates hear scenarios like this all the time from patients with a range of chronic conditions, including hepatitis C, HIV, multiple sclerosis, and rheumatoid arthritis.

Last year, more than a half-million patients in the U.S. had medication costs that exceeded $50,000, according to a recent report from Express Scripts, a company that manages prescription benefits.

“We’ve heard stories of people who’ve emptied their retirement savings to cover their drug needs,” said Betsy Imholz, special projects director at Consumers Union, an advocacy group. “It’s a really frightening, wild west situation for people who need these specialty drugs.”

She and other advocates took their concerns to Covered California, the agency that implements the Affordable Care Act in the state. In May, the health exchange became the first in the country to put a cap on how much consumers pay for these drugs.

Starting in 2016, most people will pay a maximum of $150 or $250 per prescription, per month. These caps are for Covered California’s so-called silver and platinum plans. Bronze plans will have caps of $500.

This policy will apply only to the 2.2 million people who buy coverage on the individual market. A bill under consideration in the California legislature would extend that protection to many people with employer-based plans, as well.

Several other state legislatures are considering similar specialty drug price caps, some as low as $100.

Covered California board member Marty Morgenstern said the agency should do even more by going to the root of the problem: the pharmaceutical companies.

“They charge irrational prices,” Morgenstern said, “on specialty drugs, and on all drugs, as a matter of fact.”

He said the health exchange should band together with other agencies in the state to negotiate lower drug prices.

“Medi-Cal, Covered California, Calpers [the benefit group for state employees], workers comp, the prison system, the state mental hospital system — we buy a hell of a lot of drugs,” he said. “I’m just wondering if there’s some way we can leverage that, to have some impact on the drug companies.”

Gov. Jerry Brown called for a task force earlier this year to do just this, after realizing the new hepatitis C drugs alone would cost the state more than $200 million in the next fiscal year.

Insurance companies in California have also been calling for lower drug prices.

“This is unsustainable, and it’s going to have a major impact on the price of health care,” said Nicole Kasabian Evans of the California Association of Health Plans.

Insurers see a correlation between the cost of a drug and adherence, she said. Patients who can’t afford what they’re prescribed will sometimes split pills or not take them at all.

“If you ultimately have to go back and take a second round, because you didn’t take it right the first time, or you never took it and you develop a more serious health condition, it’s not good for the consumer,” Kasabian Evans said. “And it costs the health care system more money.”

Insurers say it’s only a matter of time before the costs of specialty drugs will force them to raise monthly premiums for everyone in the health plan.

The pharmaceutical industry adamantly defends its prices.

“The cost and time it takes to bring new medicines to the marketplace is increasing, as biopharmaceutical companies go after harder and harder to treat diseases,” said Robert Zirkelbach of the Pharmaceutical Research and Manufacturers of America, the drugmakers’ trade group known as PhRMA.

He said you have to put drug prices in context. Hepatitis C drugs, like the ones Mikkel Lawrence takes, are expensive. But the cost of treating the complications of Hep C is much higher.

“The average annual cost of a patient with liver cancer today is over $110,000. If that patient needs to get a liver transplant, the cost is over $500,000,” Zirkelbach said. “We’re talking about a medicine here that cures the disease.”

In most people, but not Mikkel Lawrence. Turns out that $140,000 hep C regimen he took last year didn’t work. He fell into the 5 percent of patients who don’t respond.

But now he’s caught wind of a new drug that’s coming through the pipeline. And he’s already drafting a series of emails and letters to get it approved by his insurance plan.

“As soon as they’re out, I’m taking them,” he says.

This story is part of a reporting partnership that includes KQED, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Christine White pays $300 a year more for her health care because she refused to join her former employer’s wellness program, which would have required that she fill out a health questionnaire and join activities like Weight Watchers.

“If I didn’t have the money … I’d have to” participate, says White, 63, a retired groundskeeper from a Portland, Ore., community college.

Like many Americans, White gets her health coverage through an employer that uses financial rewards and penalties to get workers to sign up for wellness programs.  Participation used to be a simple matter — taking optional classes in nutrition or how to stop smoking. But today, a small but growing number of employers tie those financial rewards to losing weight, exercising or dropping cholesterol or blood-sugar levels — often requiring workers to provide personal health information to private contractors who administer the programs.  The incentives, meanwhile, can add up to hundreds, or even thousands, of dollars a year.

Employers say wellness programs boost workers’ health and productivity while helping companies curb rising health care costs. President Barack Obama’s signature health law allows employers to increase those financial incentives.  But asking workers to undergo medical exams or share personal health information is sharply limited by another law, the 1990 Americans With Disabilities Act (ADA), which prohibits such questioning — except under limited circumstances, such as by voluntary wellness programs.

So what is a voluntary wellness program and when do employer incentives cross the line to become coercive?

A proposed rule published this spring by the Equal Employment Opportunity Commission – the agency charged with protecting workers against discrimination – attempts to strike a balance between employers who want to use incentives to drive worker participation and consumer advocates who see penalties as de facto coercion. The plan drew about 300 comments from employers and consumer groups by a June 19 deadline, with plenty of criticism.

The equation tilts too far against workers “when … employers can charge you a couple thousand dollars more for refusing to give private medical information, [that] doesn’t sound very voluntary to me,” said Samuel Bagenstos, a University of Michigan Law School professor.

But many employers say the proposal doesn’t clear up conflicts between the health law and the ADA. In addition, it restricts their ability to offer rewards, which are needed to “engage employees and their families to be aware of their … lifestyle risks,” said Steve Wojcik, vice president of public policy for the National Business Group on Health. The EEOC has not set a timetable for issuing a final rule.

Employers Want More Flexibility

Under the proposal, wellness programs would be considered voluntary so long as the employer rewards or penalizes an employee no more than 30 percent of the cost of health insurance for a single worker. Since the average cost for such coverage is $6,025 a year, the 30 percent limit would be about $1,800.

Employers cannot fire workers for declining to participate nor can they deny them coverage, the proposal says.  They also must give workers a notice explaining what medical information will be obtained by the wellness administrator — often a private contractor — and how that might be used.

Some employers say the rule could force them to cut the size of wellness programs’ financial incentives or penalties, particularly for families and smokers.  Such limits could mean “advancements in workplace health improvement may come to an end,” wrote the Northeast Business Group on Health, a coalition of large employers, insurers and benefit consultants.

Consumer groups are also unhappy, saying the proposal strips workers of important protections against health or disability-related discrimination by loosening earlier government definitions of what constitutes voluntary.

“It walks back people’s rights,” said Jennifer Mathis, director of programs for the nonprofit Bazelon Center for Mental Health Law, a legal advocacy organization for people with mental disabilities. In its comments, the group said the proposal would allow “employers to use steep financial penalties in wellness programs to force workers to disclose sensitive medical information.”

Interest in workplace wellness programs began two decades ago, prompted by employers’ rising health care spending. Today, a growing percentage of companies ask workers to answer lengthy questionnaires about their health, including their exercise and drinking habits and whether they are depressed. Some employers also require testing of cholesterol levels and blood sugar to assess who might be at risk for heart trouble, diabetes or other problems.

About 56 percent of employers with wellness programs offered financial incentives last year, according to benefits firm Mercer, with 23 percent of large employers tying those incentives to showing progress on health care goals, such as exercising more, losing weight, dropping cholesterol levels or improving blood sugar readings.

While aimed at preventing illness and encouraging a healthy lifestyle as a way to reduce health care costs, there is wide debate over whether the programs achieve those goals.

Obamacare Ok’d Bigger Incentives

The health law permits employers to offer incentives or penalties of up to 30 percent of the cost of a health insurance plan – up from 20 percent under a previous regulation – if they set specific health goals for workers, such as quitting smoking or achieving certain results on medical tests. Most employers’ incentives are still well below those levels.

How does that square with the ADA’s restrictions on employers asking for personal medical information? That’s where it gets complicated. The EEOC long defined voluntary wellness programs under the ADA as those where “an employer neither requires participation, nor penalizes employees who do not participate.”

But what constitutes a penalty? Prior to the proposed rule, it was clear that employers who tried to charge workers the full cost of their insurance, or who barred them from coverage for refusing to participate, could run into trouble, said Sarah Millar, a partner at law firm Drinker Biddle in Chicago.

“What was not clear was at what point between zero and 100 percent [of the cost of employee health coverage] does a program not become voluntary?” she said. “Now, as long as it’s below 30 percent and meets certain disclosure requirements, then a program is still considered voluntary.”

Some consumer advocates say that level is punitive.

“Medical questions that an employee may only decline to answer if he or she agrees to pay thousands of dollars more for health insurance can hardly be called ‘voluntary,’” the Bazelon center  wrote. The group wants the government to prohibit penalties for those who decline to answer such questions.

Consumers Seek Privacy Protections

Consumer groups also want increased privacy protections for those who share their health information with a wellness plan.

The proposed rule says employers whose wellness programs are tied to their health insurance benefits must tell workers specifically what information will be gathered and with whom it might be shared.

Still, Anna Slomovic, a researcher at the George Washington University Cyber Security Policy and Research Institute, says that provision should be broadened to encompass wellness programs that are unrelated to a health plan.

“This leaves unregulated a number of wellness programs … even though these programs collect personal health data,” she said in her comments. The protections should include all data, “including that collected via fitness trackers and mobile apps.”

Many employers also asked the administration to allow them to impose penalties of up to 50 percent of insurance costs for tobacco users, which the federal health law allows.

“This is potentially putting a wrench in the system for some employers,” said Seth Perretta, a principal at the Groom Law Group in Washington D.C. “If it’s finalized, it would force them to reduce incentives back to 30 percent.”

Additionally, employers want to be able to charge workers 30 percent of the cost of more expensive family coverage, if the family is also eligible to participate in the wellness program — something the federal health law allows but the proposed rule does not. That could dramatically increase the dollar amount of the financial incentive or penalty.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

HHS announces and celebrates innovation award winners across the department

For its first 25 years, the U.S. Preventive Services Task Force toiled in relative obscurity. Created by the federal government in 1984, the task force published books and articles in scientific journals that aimed to inform primary care practitioners about which preventive services were effective based on scientific evidence. It assigns preventive services such as screenings, medication and counseling grades from A to D, or an I for insufficient evidence.

In 2010, everything changed. The massive health care bill that came to be called Obamacare included language requiring that preventive services scoring a grade of A or B from the task force had to be covered by health plans without charging consumers anything out of pocket. In one stroke, this volunteer group of nonpartisan medical experts found themselves thrust into the political hurly burly. Their recommendations, including a controversial 2009 recommendation regarding breast cancer screening, came under intense scrutiny.

Dr. Michael LeFevre, a primary care physician who is vice chairman of the Department of Family and Community Medicine at the University of Missouri, chaired the task force for 10 years. He stepped down from that position in March. We spoke recently about his tenure and how the task force’s role has evolved. The following interview has been edited and condensed.

Q. How did the health law change the role that task force recommendations play in health care?

It would be disingenuous of me not to suggest that the link between the task force A and B recommendations and insurance coverage hasn’t put an additional focus on our work. There are people who think we are making a coverage decision. We’re not. We evaluate the science, we don’t look at the costs. If the science doesn’t make clear there’s at least moderate certainty of net benefit, we don’t recommend it. We know if we give it an A or a B, there will be a link to coverage, but we’re not saying it should be covered.

Q. Let’s talk about the breast cancer screening recommendation. The task force in 2009 and again several months ago in a proposed update did not recommend mammograms for women age 40 to 49. The task force gave it a C rating, which means they should be offered selectively depending on patient preferences and health history in consultation with a physician. Some say this is a big mistake, that women in that age group won’t get mammograms that may help detect breast cancer earlier. How do you respond to critics?

A. In 2009, when we released our recommendation for breast cancer screening, we were in the middle of the debate in Congress about the Affordable Care Act. And it was already written into the bill being considered that A and B recommendations would be covered without a copayment. So we became the focus of debate about the recommendation and coverage. This created a firestorm of publicity that was, honestly, ultimately good.

We were already working to try to improve our transparency and communication. I’d be dishonest to say that it didn’t influence us. We realized that we have to be faster and clearer. Our audience is beyond primary care physicians, there are payers, government bodies and patients to consider.

Q. But what about the charges of critics such as Rep. Debbie Wasserman Schultz, D-Fla., a breast cancer survivor, who wrote in The Washington Post, “We know that mammograms are not perfect, but we also know that deferring them until after age 50 is dangerous.”

A. It’s important for us to separate out the issue of coverage from the science itself and the benefits and harms. We are well aware that many payers cover not only C recommendations but also D recommendations. All the ACA really does is set a floor and says that A and B recommendations have to be covered.

Q. How do you decide which preventive services to review?

A. We try to update existing topics every five years, more or less often depending on events. Occasionally we retire a topic.

Anybody can nominate a new topic at any time. We have a work group that looks at it continuously. We have to decide, is it prevention, and is it something that can be implemented or referred by primary care clinicians? For example, we saw that Vitamin D deficiency screening was being promoted widely. We decided it was an important topic to review.

Q. What other task force recommendations have been publicly controversial?

A. The 2009 breast cancer screening recommendation was the peak of public scrutiny. But the breast cancer screening recommendation for women 40 to 49 is not negative [since it suggests that mammography can be offered based on the views of the doctor and patient]. In contrast, we recommended against prostate cancer screening. We gave it a D. To my knowledge nobody has stopped covering prostate cancer screening. We got a lot of attention for that. We still get a lot of attention and some advocates still want that to change. I am surprised about the depth of feeling about the recommendations.

Q. In your role as the immediate past chairman of the task force, you’re involved as a consultant until next spring. What’s on the drawing board going forward? How will the task force change and evolve in the next 10 years?

A. I look for us to continue to try to be transparent in our work. I can’t tell you exactly what shape that will take as we go forward. We’re not the wizard behind the curtain that makes decrees. We want people engaged in our work and to know how we do that work. Did we miss something, did we reach the right conclusions?

I look for us to increase communications. We are increasingly putting out tools for consumers on the Web. I’m probably not supposed to tell you this, but what the heck. Part of our method now, after we’ve reviewed the evidence, we actually have somebody from the communications team get up and grill us. A non-clinician. We feel like if we can’t explain it, we haven’t done our job. We appreciate that our language has to go beyond what a clinician understands.

Transparency, methodological rigor and communications. That’s what we’re focusing on.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Donna Miles didn’t feel like getting dressed and driving to her physician’s office or to a retailer’s health clinic near her Cincinnati home.

For several days, she had thought she had thrush, a mouth infection that made her tongue sore and discolored with raised white spots. When Miles, 68, awoke on a wintry February morning and the pain had not subsided, she decided to see a doctor. So she turned on her computer and logged on to www.livehealth.com, a service offered by her Medicare Advantage plan, Anthem BlueCross BlueShield of Ohio. She spoke to a physician, who used her computer’s camera to peer into her mouth and who then sent a prescription to her pharmacy.

“This was so easy,” Miles said.

For Medicare patients, it’s also incredibly rare.

Nearly 20 years after such videoconferencing technology has been available for health services, fewer than 1 percent of Medicare beneficiaries use it. Anthem and a University of Pittsburgh Medical Center health plan in western Pennsylvania are the only two Medicare Advantage insurers offering the virtual visits, and the traditional Medicare program has tightly limited telemedicine payments to certain rural areas. And even there, the beneficiary must already be at a clinic, a rule that often defeats the goal of making care more convenient.

Congress has maintained such restrictions out of concern that the service might increase Medicare expenses. The Congressional Budget Office and other analysts have said giving seniors access to doctors online will encourage them to use more services, not replace costly visits to emergency rooms and urgent care centers.

In 2012, the latest year for which data are available, Medicare paid about $5 million for telemedicine services — barely a blip compared with the program’s total spending of $466 billion, according to a study in the journal Telemedicine.

“The very advantage of telehealth, its ability to make care convenient, is also potentially its Achilles’ heel,” Ateev Mehrotra, a Rand Corp. analyst, told a House Energy and Commerce subcommittee last year. “Telehealth may be ‘too convenient.’ ”

But the telemedicine industry says letting more beneficiaries get care online would reduce doctor visits and emergency care. Industry officials as well as the American Medical Association, the American Hospital Association and other health experts say it’s time for Congress to expand use of telemedicine in Medicare.

Popular Outside Medicare

“There is no question that telemedicine is going to be an increasingly important portal for doctors and other providers to stay connected with patients,” former Surgeon General Richard Carmona said in an interview.

Some health experts say it’s disappointing that most seniors can’t take advantage of the benefit that many of their children have.

“Medicare beneficiaries are paying a huge price” for not having this benefit, said Jay Wolfson, a professor of public health, medicine and pharmacy at the University of South Florida in Tampa. For example, he said, telemedicine could help seniors with follow-up appointments that might be missed because of transportation problems.

Aetna and UnitedHealthcare cover telemedicine services for members younger than 65, regardless of whether enrollees live in the city or in the country. About 37 percent of large employers said that they expect to offer their employees a telemedicine benefit this year, according to a survey last year by Towers Watson, an employee benefits firm. About 800,000 online medical consultations will be done in 2015, according to the American Telemedicine Association, a trade group.

Medicare’s tight lid on telemedicine is showing signs of changing. In addition to Medicare Advantage plans, several Medicare accountable care organizations, or ACOs — groups of doctors and hospitals that coordinate patient care for at least 5,000 enrollees — have begun using the service. Medicare Advantage plans have the option to offer telemedicine without the tight restrictions in the traditional Medicare program because they are paid a fixed amount by the federal government to care for seniors. As a result, Medicare is not directly paying for the telemedicine services; instead, the services are paid for through plan revenue.

Republicans and Democrats in Congress are also considering broadening the use of telemedicine; some of them tried unsuccessfully to add such provisions to the recent law that revamped Medicare doctor payment rules and to the House bill that seeks to streamline drug approvals.

‘Changing This Dynamic’

This year, Medicare expanded telemedicine coverage for mental health services and annual wellness visits — when done in certain rural areas and when the patient is at a doctor’s office or health clinic.

“Medicare . . . is still laboring under a number of limitations that disincentivize telemedicine use,” said Jonathan Neufeld, clinical director of the Upper Midwest Telehealth Resource Center, an Indiana-based consortium of organizations involved in telemedicine. “But ACOs and other alternative payment methods have the possibility of changing this dynamic.”

AARP wants Congress to allow all Medicare beneficiaries to have coverage for telemedicine services, said Andrew Scholnick, a senior legislative representative for the lobbying group. “We would like to see a broader use of this service,” he said. He stressed that AARP prefers that Medicare patients use telemedicine in conjunction with seeing their regular doctor.

The American Medical Association has endorsed congressional efforts to change Medicare’s policy on telemedicine, as has the American Academy of Family Physicians. “We see the potential for it . . . to improve quality and lower costs,” said Robert Wergin, president of the academy and a family doctor in Milford, Neb. He said such technology can help patients who are disabled or don’t have easy transportation to the doctor’s office.

Anthem, which provides its telemedicine option to about 350,000 Medicare Advantage members in 12 states, expects the system to improve care and make it more affordable. “It’s also about the consumer experience and giving consumers convenience to be able to be face to face with a doctor in less than 10 minutes, 365 days a year,” said John Jesser, an Anthem vice president. Anthem provides the service at no extra charge to its Medicare Advantage members.

While seniors are more likely to have more complicated health issues, telemedicine for them is no riskier than for younger patients, said Mia Finkelston, a family physician in Leonardtown, Md., who works with American Well, a firm that provides the technology behind Livehealth.com. That’s because the online doctors know when they can handle health issues and know when to advise people to seek an in-person visit or head to the emergency room, she said.

“Our intent is not to replace their primary care physician, but to augment their care,” she said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

HHS launches GIS-based tool for health disaster readiness