By Amy Sutton, Contributing Writer and Kelly Malcom, Editor

Most people don’t have the luxury of letting work slip, even when serious illness strikes. Everyday bills keep coming and new health care expenses pile up.

Not to mention that, for many, the workplace is their main source of health insurance and provides social support that can help through stressful times.

Workplaces vary dramatically in how they treat employees with illness, and unlike companies in other countries, U.S. employers aren’t required by law to provide paid sick leave to workers.

According to the Department of Labor, only 73 percent of full-time workers and 26 percent of part-time workers in the United States receive paid time off for illness.

Though the average amount of time off provided varies across occupations and industries, workers who get sick time receive between six to 12 paid sick days annually.

A week of sick time may be enough if you get hit with the flu or a cold. But what happens when you have a chronic condition, such as Crohn’s disease, multiple sclerosis or diabetes, and the time off you need exceeds your number of sick days? What protections do you have if you require major surgery?

Taking Time Off

You’re sick, and you want to keep your job. Before you even sit down with your boss or human resources director, talk to your doctor about your diagnosis, what to expect and how your symptoms might progress over time.

He or she can offer perspective on how much you should work now and how long you might be able to keep working later.

Next, turn to your company’s employee handbook for guidelines on when sick leave is appropriate, how to ask for time off and whether short- or long-term disability benefits are available.

For a newly diagnosed person unfamiliar with the world of work benefits, “the information is overwhelming,” says Theresa (Terry) Perry, the managing principal with PinkSlip, a San Francisco-based benefits and retirement consultancy.

To get a handle on what work benefits you’re entitled to, Perry suggests turning to online sources. “There may be a lot of information online if the company has an intranet,” she adds.

Seek out other sources of information, she advises. “Insurance vendors can tell you about add-on benefits” such as coverage for disease management and pharmacy costs. “You can still seek out your benefits, even if you don’t say what the illness is,” Perry says.

Finally, you may want to meet with your human resources representative (or your boss, if you work at a small company) to discuss your health needs at work.

Some companies provide short-term disability benefits for a few weeks or months if workers can’t do their jobs due to illness or injury, and your HR person can tell you whether those benefits are an option for you.

Typically, you don’t receive your full pay, but a percentage of your income, during the time you’re on disability.

Your HR representative can inform you of the necessary paperwork needed to obtain benefits. Don’t delay in filling out the forms.

Workers “could lose their job if they don’t have medical coverage — a doctor’s note from the time they went out to the day they return to work, or if they don’t come back when a doctor releases them from care,” says Jackie Lynn Jeter, president of the Amalgamated Transit Union, Local 689, which represents workers for the Washington Metropolitan Area Transit Authority.

Resources for Sick or Disabled Workers

• U.S. Department of Labor’s Office of Disability Employment Policy – State Liaisons: This directory can help you locate state-specific disability employment services.

• Disability Planner: Social Security Protection If You Become Disabled .

• Job Accommodation Network: This service provides information on workplace protections for people with disabilities.

• Family and Medical Leave Act (FMLA)

• Americans with Disabilities Act (ADA)

What the Law Says

Keep in mind that there are federal protections for workers, too. Under the Family and Medical Leave Act (FMLA), employees can take up to 12 weeks off to deal with their own illness or to care for a seriously ill child or family member.

Your employer is not required to pay you, although they may encourage you to use your accrued sick or vacation time.

However, be aware that FMLA only covers people who work for companies with more than 50 employees and it is only required if you’ve worked a certain number of hours in the previous month.

If you’re an employee of a small business or work only a few hours a week, your employer is not required to offer paid leave or hold your job while you recover from an illness.

Workers with chronic medical conditions, such as chronic pulmonary lung disease or epilepsy, may also be protected under the Americans with Disabilities Act (ADA), which requires employers to make adjustments for people with disabilities. In some cases, that may include extra time off to attend medical appointments or recuperate from treatments.

Though the Patient Protection and Affordable Care Act (PPACA) legislation enacted in September 2010 does not bring changes for paid sick leave requirements, health care reform does prohibit your insurance company from dropping you if you become sick.

In addition, the PPACA also requires employers to notify you of your health insurance coverage and benefits along with providing your W-2, so you’ll be more informed about your insurance benefits.

Communicating Your Condition

When it comes to dealing with a chronic health condition at work, it’s a fine line between providing just enough and too much information.

However, being too closemouthed could put your job in jeopardy, says Larry Kessler, Sc.D., former director of the Office of Science and Engineering Laboratories in the Center for Devices and Radiologic Health of the Food and Drug Administration.

“Recognize that if you are ill and nobody knows (and your work is slacking) people will want to know why the boss is not disciplining or firing you,” Kessler says.

Letting your coworkers in on your condition may be necessary, especially if you have epilepsy, diabetes, food allergy or another condition that could flare at work.

Communicating to your coworkers about what to do if you have a seizure or severe low blood sugar could even save your life.

Kessler is sympathetic to the plights of sick workers: “If somebody is doing chemo and it’s making them frail, they get tired easily; you can take some of the workload off their plate, if they can give you a good two to three hours of work stretched over the work day. It helps their self-esteem and the project moves ahead.”

But productivity is still the top priority. “[As the boss] you’re still responsible for getting it done,” Kessler says.

The Long-Term Picture

In January 2006, Christine Cook, 26, a music teacher in Calvert County, MD, learned that she had Crohn’s disease, a chronic and debilitating digestive condition.

She wasn’t sure how much to reveal at work or if she could function during exacerbations. Fearing for her job, Cook only took time off for medical appointments she couldn’t schedule outside of work.

Years after her diagnosis, with her condition stable, Cook reports that her school administration remains supportive. Her middle school principal periodically asks, “How are you feeling? Are you OK? Is there anything we can do for you?”

The outlook isn’t always so optimistic.

Theresa Perry recalls the case of a terminally ill person with a degenerative bone disease. As the illness progressed, the employer “continued to let that person work at home, in the hospital, over the telephone. The person would just call in and that would count as time worked.” Perry says.

“Typing was a huge part of that job role. The company did a creative ADA-type of implementation with voice-recognition software.” Eventually, “the company hired another person to help.”

Because the organization was large, it could make every effort to allow this person to keep working, Perry says. “It’s expensive, but the respect it demonstrates boosts morale of all the workers; they feel the company cares.”

But people who’ve lived through the experience warn that employers’ patience with illness often changes over time. Some will bend over backwards initially, but eventually, they have to get the work done and if you can’t do it, you might have to leave.

“It’s extremely important to protect your job and income,” Perry says. “If it’s overwhelming for you, pull in a friend, a trusted person” to help gather information and be your advocate.

Health Behavior News Service is part of the Center for Advancing Health

The Health Behavior News Service disseminates news stories on the latest findings from peer-reviewed research journals. HBNS covers both new studies and systematic reviews of studies on (1) the effects of behavior on health, (2) health disparities data and (3) patient engagement research. The goal of HBNS stories is to present the facts for readers to understand and use for themselves to make informed choices about health and health care.

This story comes from KHN partner ‘s Shots blog.

Amber Cooper and her husband were doing OK. They both had jobs. A healthy 5-year-old son, a house in Riverbank, Calif., and health insurance from her job in the accounting department of a small manufacturing company.

Amber Cooper lives in Modesto, Calif., with her 5-year-old son, Jaden, and her husband, Kevin. She had a liver transplant when she was 10 years old and has to take anti-rejection medication. (Photo by Deanne Fitzmaurice for NPR)

Amber Cooper lives in Modesto, Calif., with her 5-year-old son, Jaden, and her husband, Kevin. She had a liver transplant when she was 10 years old and has to take anti-rejection medication. (Photo by Deanne Fitzmaurice for NPR)

But then one day everything changed.

“We were in a conference room getting the information and I had heard rumors but didn’t know if it was true and started crying in front of everyone and actually had to excuse myself to gather myself together and go back in. It was devastating for me,” said Cooper.

It was devastating because the rumors — her worst fears — had come true. Cooper had a liver transplant when she was 10. So she takes a drug twice a day so her body won’t reject her liver. She was in that conference room for a meeting about her health insurance.

“Every year my company changes the insurance. And instead of giving us three different choices for insurance plans they were changing to one, which was a high-deductible plan with no prescription coverage,” she said.

Cooper was stunned. Her anti-rejection medicine costs way more than she could afford on her own — more than $1,000 a month.

Cooper, 30, started a frantic search for help. Finally, she found the HealthWell Foundation, which was willing to pay for her medication.

But she still couldn’t afford the $300 blood test she needs every month to make sure she’s not rejecting her liver.

“It is scary because the only way to tell if you’re going to go into rejection is by the blood work. Your numbers will be a little bit crazy and then the doctors will be like, ‘OK, you need to get in and we need to check you out and make sure you’re OK.’ So I really took a risk not getting that blood work done. But I couldn’t afford to get it done. I really couldn’t,” she said.

“Beneath the surface what health insurance is in the country has been changing really dramatically. And just in plain language it’s becoming skimpier and skimpier and less and less comprehensive,” said Drew Altman of the Kaiser Family Foundation, a private, non-profit, non-partisan research group. (KHN is a editorially independent program of the foundation).

Paul Fronstin of the Employee Benefits Research Institute says that is the trend nationally.

“Deductibles have gone up. Co-pays have gone up. You see costing-sharing for out-of-network services have gone up,” Fronstin said. “It seems to have accelerated in the last few years. Health care is just continuing to take a bigger bite out of take-home pay.”

So even people with insurance are paying thousands of dollars out of pocket before their insurance kicks in. And even when it does, insurance picks up less then it used to — often a lot less.

More than 1 in 5 Americans had a problem getting insurance to pay for a hospital, doctor or other health care in the past year, according to a new poll by NPR, the Robert Wood Johnson Foundation and the Harvard School of Public Health.

Altman says this comes as many families are struggling to get by.

“This effects not only how people seek health care — they’re more reluctant to get it if they can put it off. But it also affects family budgets in a very real way, especially as we’re still coming out of recession and families are still crunched by a weak economy,” Altman said.

Cooper’s family has stopped taking trips, eating out, fixing up their house, or spending money on anything else they don’t have to. Their son gets by with hand-me-downs, she said.

“He’s five and growing out of everything. I haven’t been able to buy him any clothes and shoes. Those are things I haven’t been able to purchase because of the increase in the health care,” she said.

And Fronstin says the weak economy is driving more and more companies to cut back on coverage because of simple math — it’s the only way they can keep up with rising health care costs.

“Employers are trying to manage those costs. They’re trying to keep those cost increases as close to inflation as possible. And they’re doing everything they can to get their workers so that they think twice about the health care that they are using,” Fronstin said.

Cooper’s just grateful she’s getting her drugs every month. And she started those monthly blood tests again when her company changed insurance again this year. But it’s still not as good as it used to be. So she and her husband don’t go to the doctor when their get sick if they can avoid it. Same goes for their son.

“There were a couple of times where he got sick where I just tried to do the best I could with what I had whether it was children’s Ibuprofen or cooling him down with cool rags and that sort of thing,” she said.

And Cooper can’t help but worry about the next company meeting about her family’s health plan.

“It changes every year so I really have no clue what’s going to happen next year and with them making that change I really don’t know what to expect every year,” she said.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

By Julia Appleby
KHN Staff Writer 

Higher prices charged by hospitals, outpatient centers and other providers drove up health care spending at double the rate of inflation during the economic downturn– even as patients consumed less medical care overall, according to a new study.

Prices rose at least five times faster than overall inflation for emergency room visits, outpatient surgery and facility-based mental health and substance abuse care from 2009 to 2010, says the report by the Health Care Cost Institute, a nonpartisan research group funded by insurers.

Prices declined in only one category: nursing home care, which saw a 3.2 percent drop in the cost per admission.

One of the areas with the fastest growing spending, meanwhile, was children’s medical care.

“The story really does seem to be prices,” said Martin Gaynor, chair of the institute’s governing board and a health care economist at Carnegie Mellon University.

Representing one of the broadest looks at actual claim payments made by insurers, the study’s findings raise questions that go to the heart of the nation’s $2.6 trillion annual bill for health care: Why are prices for medical services rising far faster than inflation? Is a rapid increase in spending on children an anomaly, or a long-term trend with major implications for future costs?

Hospital admissions, outpatient visits, procedures all fell

“If you don’t know what the cause is, you don’t know what the right policy lever is (for a solution),” Gaynor says

He says the Institute, founded last year to make insurance industry payment data available to the public, will address some of those questions in subsequent research.

The findings are based on about 3 billion claims paid by Aetna, Humana and UnitedHealthcare on behalf of 33 million people with job-based insurance nationwide.

The data represent about 20 percent of the people with insurance nationally, but do not include spending for people who are on Medicare, Medicaid or those who buy their own policies.

Hospitals and other medical providers “just seem to be able to raise prices faster than general inflation,” he says.

Workers’ copayments and deductibles, which they pay on top of their share of premium costs, also rose, according to the study. Such “out-of-pocket costs” jumped 7.1 percent between 2009 and 2010 to an average of $689 per person.

Prices and overall use of medical care are major factors driving the cost of health insurance. While the study does not analyze premium increases, those have risen steadily, with one national employer survey by the Kaiser Family Foundation showing a cumulative 138 percent increase in job-based insurance premiums between 1999 and 2010. (KHN is an editorially independent program of the foundation.)

As part of the federal health law, all states last year began reviewing premium increases of 10 percent or more, requiring insurers to justify the increases.  There are no similar national efforts to examine price increases by hospitals or other medical providers.

Insurers argue they are just passing along rising costs to consumers, keeping only a narrow profit margin and are often outgunned in contract negotiations by hospitals, many of which are “must-have” facilities in an insurer’s network.

“This is an important study that clearly demonstrates that rising prices for medical services are driving health care cost growth,” said Karen Ignagni, president and CEO of America’s Health Insurance Plans, the industry lobby. “Reducing medical costs is essential to making health care coverage more affordable for individuals, families, and employers.”

Researcher White says insurers must take a more active role. “If insurers are incapable of reining in growth of prices they pay providers, that’s a problem,” he says.

Struggling with rising costs, some states and insurers are looking at new approaches. In Massachusetts, for example, supporters and opponents are sparring over a proposal that would impose financial penalties on hospitals or other providers who exceed by 20 percent or more a specified state median for a medical service.

In North Carolina, one major insurer aims to negotiate contracts with hospitals and other medical providers that limit increases to no more than the medical inflation rate.

“We have met that goal for the past two years,” says Brad Wilson, CEO of Blue Cross Blue Shield of North Carolina. That effort, along with lower use of medical services, translated into zero to 5 percent premium increases for policies sold to individuals — the smallest rise in five years.

The report found the biggest spending increases in the Northeast, up 4.3 percent and – surprisingly — among children under 18, up 4.5 percent nationally.

That compares with a 3.1 percent jump in spending on 55 to 64 year olds.

While spending grew fastest among pediatric patients, the report found medical care  for older patients costs more in total dollars – averaging $8,327 a year – than for those under 18, at $2,123.

A future report will probe the reasons for the growth in pediatric spending. Possibilities could include big expenses for premature babies, the rising incidence of obesity and related diseases or an increasing demand for mental health and behavioral services.

It could also reflect families’ increasing struggle to pay their share of medical costs by foregoing or delaying medical visits for their children, says Irwin Redlener, a professor at Columbia University’s Mailman School of Public Health and president of the Children’s Health Fund, a nonprofit that provides medical care to underserved children.

“Even families with employer-based insurance are seeing their costs going up , but not their salaries,” says Redlener. So they may be “saving where they can” and foregoing preventive care, such as vaccinations, and treatments for chronic illnesses, such as asthma or diabetes.

Overall, during the period analyzed, prices charged nationally grew the most for emergency room visits, up 11 percent, surgery that did not involve a hospital stay, up 8.9 percent, and mental health and substance abuse services, up 8.6 percent.

The price per hospital admission rose an average of 5.1 percent, hitting $14,662. Surgical admissions had the highest overall price tag, at an average of $27,100,  representing a 6.4 percent increase from 2010.

Spending by insurers and policyholders on medical care rose 3.3 percent per person from 2009 to 2010, about twice the 1.6 percent increase in the Consumer Price Index.

Mary Agnes Carey contributed to this story.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Source: NPR/Robert Wood Johnson Foundation/Harvard School of Public Health Poll. Credit: Alyson Hurt/Nelson Hsu, NPR

From KHN partner NPR

In the lull between the Supreme Court arguments over the federal health overhaul law and the decision expected in June, we thought we’d ask Americans who actually use the health system quite a bit how they view the quality of care and its cost.

When the results came back, we found that people who have a serious medical condition or who’ve been in the hospital in the past year tended to have more concerns about costs and quality than people who aren’t sick.

No big surprise there.

But what was notable: 3 of 4 people who were sick said cost is a very serious problem, and half said quality is a very serious problem.

Nearly half of those with recent serious illness say they felt burdened by what they had to pay out of their own pocket for care.

The recently ill are more likely to say the cost and quality of care have worsened over the past five years, compared to people who weren’t sick.

Among people who’ve recently required a lot of care, significant proportions say their treatment was poorly managed, with nearly a third complaining of poor communication among their caregivers. One in eight believe they got the wrong diagnosis, treatment or test.

Those findings led us to investigate the problems people are having, both in our poll and in a series of stories on the radio and the Web we’re calling “Sick in America.”

The poll, a joint venture of NPR, the Robert Wood Johnson Foundation and the Harvard School of Public Health, is one of very few focusing on people who’ve actually been seriously ill, injured or hospitalized in the past year.

“This poll listens to the voices of the sick,” says Robert Blendon of Harvard. “That provides a good barometer of what’s happening in health care in America.”

The poll randomly surveyed 1,508 adults across the nation. A little more than a quarter of them had a serious illness, injury or disability requiring “a lot of medical care,” or overnight hospitalization within the past 12 months.

If you want to dive deeper:

• Here’s a summary of the poll findings,

• plus the topline data and charts.

The Obama administration is moving forward with an ambitious, fast-moving agenda to improve the treatment of Alzheimer’s disease and unlock a method to prevent it by 2025.

The final draft of the plan, released today, also sets up a wide-ranging effort to improve the care that Alzheimer’s patients receive and support families.

I am not alone – alzheimers.gov

As many as 5.1 million Americans are diagnosed with Alzheimer’s disease, and that number could more than double in the next few decades, said Health and Human Services Secretary Kathleen Sebelius when she unveiled the plan at a National Institutes of Health summit on Alzheimer’s-related research.

The majority of the plan’s expected funding – $130 million over the next two years – will go toward NIH research, but another $26 million will go toward Alzheimer’s care and public awareness.

Chief among those is a government website, alzheimers.gov, also launched Tuesday. The site serves as a “one-stop shop,” Sebelius said, for patients and their families.

It features information on Alzheimer’s diagnosis, caregiver support, insurance coverage and clinical trials for new treatments.

A radio, TV and print campaign will promote the site beginning this summer and encourage families to plan ahead for the care of their loved ones.

The site will also serve as a resource for health care providers, featuring up-to-date information on how to diagnose and treat Alzheimer’s.

Secretary Kathleen Sebelius

Sebelius noted that the health law requires Medicare providers to check patients for cognitive impairment during annual wellness visits, but it will be increasingly important for all providers to have guidelines for Alzheimer’s diagnosis and to look for signs of illness prior to age 65.

The online resources will complement several on-the-ground initiatives. Grants are being awarded this summer to educational centers that work with geriatricians, nurses and others to develop new curricula and training programs.

Sebelius said that the administration’s goal is to “improve the care, immediately, that people with the disease receive.”

In addition, the administration plans to evaluate how Alzheimer’s patients fare within new health care models, like the medical homes and accountable care organizations being promoted by the health law.

Reviews will focus on changes in patients’ cognitive function and on the efficiency of services provided. Work on that front is projected for completion by the end of this year.

It will take much longer, though, to find new treatments, or even a preventive treatment, for Alzheimer’s. NIH Director Francis Collins said Tuesday that study of the disease is “at an exceptional moment.”

He went on to announce two major research grants: one will evaluate a nasal spray that could improve patients’ brain function; the other will test a preventive medication among a large family in Colombia whose members have a genetic predisposition to Alzheimer’s.

Know where to turn: alzheimers.gov

The national plan for Alzheimer’s has been through several months of development since President Barack Obama signed the National Alzheimer’s Project Act in January 2011.

Funding, however, remains an issue. The administration announced in February it would devote $156 million over two years to the national plan.

Immediately, $50 million of already available NIH funds were transferred to Alzheimer’s-related projects. Another $80 million was requested as part of the president’s Fiscal Year 2013 budget, which has yet to be passed by Congress.

Much of the $26 million going toward Alzheimer’s care and awareness is also awaiting approval.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.