Sick and Vulnerable, Workers Fear for Health and Their Jobs

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http://www.truthout.org/issues_05/121905HA.shtml

 

Sick and Vulnerable, Workers Fear for Health and Their Jobs

By Lisa Belkin

The New York Times

 

Saturday 17 December 2005

 

 

When Marty Domitrovich was first told that he had cancer, he was a

51-year-old sales executive, so successful that he had two goals: to

reach $1 million in commissions and bonuses and to become chief

executive of his company, where he had worked since his summers in

college.

 

Before long, however, he could no longer travel, and on the bad

days he did his work at home, lying on the couch and talking on the

telephone.

 

When Shannon Abert was first told she had scleroderma, she was 35,

and loved her job teaching high school algebra. Until her illness was

diagnosed, she was healthy and active, never taking a sick day from

work, not even bothering to find a doctor who accepted her school

district's insurance plan. Her disease progressed quickly, though, and

soon she could not write on the blackboard, pull students' files or

turn the classroom doorknob.

 

Work takes on many meanings when illness strikes: a cause of added

stress; a place to escape from that stress; a source of income,

insurance, identity and normalcy; and a fear of losing all those and more.

 

Both Mr. Domitrovich, now 58, and Ms. Abert, now 38, wanted to

keep working after their conditions were diagnosed, and both asked

their employers for help. One was told, " We'll give you whatever you

need. " The other recalls facing much more ambivalence, with one

administrator telling her, " We all have problems, just do the job. "

 

In this way, their stories reflect the realities of being ill in

today's workplace, at a time when sick workers have more legal

safeguards than ever before, and yet also face gaps, inconsistencies

and question marks in those laws. Yes, how an employee is treated

after crossing the stark line from worker to patient is broadly

defined by legislation. But it is more specifically determined by

things like the culture of a workplace and the sensitivity of a boss.

 

" We've come a million miles from the bad old days, " said Robin

Bond, who runs an employment law firm in Wayne, Pa., and represents

individuals with claims against employers. " But no law changes the

basic fact that employers want to do what's good for business. Their

job is not necessarily to do what is good for you. "

 

At a time when a worker is most physically and emotionally

vulnerable, the person must also adroitly navigate to protect himself

or herself.

 

" I didn't want to worry about work, but work was all I worried

about, " Ms. Abert said of the months after her illness was diagnosed

in 2003. " I had to keep my insurance. I had to pay my rent.

 

" When you're sick, " she said, " trying to get out of bed every day,

that's the worst time to have to worry about your job, but you have no

choice. "

 

Double Jeopardy: Health and Job

 

Whether an employee enters a job with a diagnosed disability or

becomes impaired after being hired, the worker faces the decision of

whether and when to tell the employer. It is a choice loaded with

emotion, and also with ramifications under the law.

 

" The diagnosis is a crisis in itself, " said Carolyn Messner, an

oncology social worker and director of education and training for

cancer care in Manhattan. " The next crisis is telling people. "

 

Mr. Domitrovich announced his devastating news almost immediately

after he received it on Jan. 1, 2000. As vice president of sales and a

regional manager for Cutco/Vector, which sells and manufactures

cutlery, he was based in Chicago but traveled constantly.

 

When he began experiencing gastrointestinal symptoms in 1999, it

was impossible to keep his team from noticing that something was

wrong. He said he did try not to let word spread beyond that small

group, however, because " as a leader you don't want to show too many

of your weaknesses. "

 

Soon the symptoms became more severe, and tests found an

neuroendocrine islet cell tumor in the pancreas. The cancer had

already spread to his liver.

 

Mr. Domitrovich told his wife and grown children first; then,

within days, he informed the chief executive of the company and his

close staff. The company's yearly banquet for the regional sales team

was held two weeks later, and he shared the news in a brief speech to

the 700 people who attended.

 

Ms. Abert, in contrast, kept her misery to herself. Her first

symptoms appeared in the fall of 2002, when her fingers began turning

purple, as if she had frostbite, but she knew that was unlikely in

Clear Lake, Tex., near Houston.

 

An internist theorized that she had developed carpal tunnel

syndrome from writing math equations on the board, and gave her wrist

splints, which only made the problem worse. The pain spread to her

legs and toes, but she did not tell her principal because she did not

want to be seen as a weak link. It was stress, she reassured herself.

It would go away.

 

It did not, and eventually, in January 2003, at the end of her

school's winter vacation, a rheumatologist confirmed that Ms. Abert

had scleroderma, a chronic connective tissue disease in which the body

attacks itself, leading most noticeably to hardening of the skin. Now

it was not pride, but fear and a need for privacy, that kept her quiet.

 

On the one hand, she was still absorbing all that was happening to

her and she was not ready to share that exquisitely personal process

with the world. At the same time, she did not know whether her job was

in jeopardy and she was too afraid of the answer to ask the question.

Besides, if her supervisors and colleagues knew, she was certain her

students would find out as well, meaning she would lose the authority

a teacher must have to command a classroom.

 

" I can't look at them and say, 'Y'all, I'm not feeling well,' "

Ms. Abert said. " They will wreak havoc. "

 

This instinct for privacy is common, said dozens of employees,

employers, lawyers, health care providers and patient advocates

interviewed for this article.

 

" I don't want to be labeled as the sick person, where all people

see is the disease, " says Tecela Harris, 38, who told only a version

of the truth at a job interview for State Farm Insurance more than a

decade ago, not mentioning that she had rheumatoid arthritis, which

made her joints swell horribly and caused constant pain.

 

" They told me the job was for claims adjuster and it included

climbing up on roofs, " Ms. Harris recalled. " When they asked, 'Are you

going to be able to do that?' I said I could do it. "

 

The result was years of agony until, needing to take 70 days off

to recuperate from foot surgery to correct damage from the disease,

she finally revealed her illness to her boss in 2000.

 

" I was almost in tears, " during that conversation, said Ms.

Harris, who is now on a recently approved medication that leaves her

free of pain. " My illness was not something I was proud of, so I

didn't really want to share that. "

 

And yet, while patients might prefer to keep silent, the law

favors disclosure.

 

Two pillars of legislation have come to define the rights of ill

workers in recent years: the Americans With Disabilities Act, passed

in 1990, requiring employers to make " reasonable " accommodations for

disabled or seriously ill workers, as long as they can perform the

" essential " functions of the job; and the Family and Medical Leave

Act, passed in 1993, allowing workers to take up to three months off

from work without losing their health insurance or job.

 

Under each, employers are only obligated to help employees whose

conditions are known to them. A worker who regularly misses work for

chemotherapy treatments, but does not explain why, can be dismissed

for absenteeism and cannot then appeal on grounds of disability.

 

That creates a dilemma that is equal parts emotional and tactical.

 

" I advise workers not to tell their employer, unless they want to

ask for accommodation because of a disability, " said Sharona Hoffman,

a professor at Case Western Reserve University School of Law and an

expert on the legislation. " If you want to invoke the protection of

the law, then you have to tell. "

 

A Plan to Stay Alive

 

Mr. Domitrovich armed himself for his early conversations with a

business plan. He would never tackle a new business challenge without

a plan, he said, and this was a new business challenge. Among his

goals were to " stay alive long enough to find a cure " and to " see

granddaughter go to grade school. "

 

He told his bosses that he was certain he could keep working

through his treatment, meeting sales projections. " I believe my team

can produce, even though I'm not there every day, " he remembers saying.

 

Sales positions at Cutco/Vector are paid solely on the basis of

commissions and incentive bonuses, so his own income along with that

of his staff was on the line.

 

For six months, Mr. Domitrovich was able to work with little

trouble. The medication he was taking had few side effects and

succeeded in restricting the growth of his tumor.

 

But eventually the mass began to press on his biliary duct,

requiring surgery to insert a stent to relieve the pressure. Then the

cancer began growing faster. He entered a clinical trial, which slowed

the growth, but by then years of toxic medication had damaged his

gallbladder, which had to be removed.

 

Through all this, he did meet his sales goals. His team's revenues

increased 25 percent in 2001 and another 38 percent in 2002, which is

the year he reached his $1 million income goal. (He also saw his

granddaughter start kindergarten last year.)

 

But the toll of work and treatment was heavy, and he decided that

he could not keep up the pace.

 

Before Mr. Domitrovich could tell his bosses of that decision,

though, they made one of their own. They announced a restructuring,

increasing four sales regions to six, and effectively eliminating his

job. They suggested another role that he might play: running the Fair

and Show program, which coordinated cutlery sales at places like local

fairs and conventions. It was an important part of the business, but

it would require travel, which he knew he could not do.

 

When his disease was first diagnosed, Mr. Domitrovich joined a

support group of cancer patients, and over the months, he said, he

heard " the horror stories. " The man with cancer of the jaw who had to

take out a second and third mortgage on his home when he lost his job

after his family medical leave time ran out. The man with stomach

cancer who was told that his company would " stand behind you 100

percent, " then let him go within six months.

 

So Mr. Domitrovich did not turn down the new job right away.

Instead he asked for some time to think about what work he would like

to do next.

 

'I Am So Sick, I Can't Make It'

 

Scleroderma patients have a particularly hard time getting out of

bed in the morning, possibly because muscles stiffen and weaken

overnight. Ms. Abert lived alone in the months after she became ill,

and she had no one to help her with morning buttons and zippers. Each

night she would take a sedative so she could sleep in spite of the

pain, and even though she went to bed at 8 p.m., she was often late

for the start of class at 7:30 a.m.

 

Her students noticed, she said, just as they noticed the ulcers on

her fingers and the steady weakening of her hands. She could not get

the caps off the markers for the dry erase board. Even screwing the

top off a bottle of water meant asking a student for help.

 

But still Ms. Abert maintained the facade of health, until the

fall of 2003, when the weather turned colder and she finally hit bottom.

 

It was the time of year when the forms arrived for her to choose

her benefit options for the next 12 months. She read carefully, but

when she found nothing about long-term disability, she assumed she did

not have that option.

 

A search of the Internet found information about the Family

Medical Leave Act, including the fact that the three months of leave

were unpaid, and then neither her job nor her health insurance were

protected.

 

She could not imagine how she would cope under those

circumstances. Still, she thought, maybe a few months off would help

her regain some energy. So she dragged herself to the human resources

department, where she recalls telling a counselor, " I don't think I

can do this anymore. I am so sick, I can't make it day to day. "

 

His initial answer, she says, was: " You don't look sick. We're all

tired. Hang in there. "

 

" He kept saying 'It has to be measurable, you need documentation,

it has to be something that can be measured,' " Ms. Abert said of

Steven Austin, the director of employment benefits and risk management

for the school district.

 

While Mr. Austin agreed that he probably did explain the need for

documentation ( " You have to provide certification for medical leave, "

he said in an interview), he said he did not believe that he said

anything harsher than that. He concedes, however, that others in the

district may well have said such things to Ms. Abert.

 

" There wasn't a lot of support for her " from her superiors, Mr.

Austin said, adding that he wondered whether her memory had put

someone else's words in his mouth.

 

Most in Need, Most at Risk

 

The Catch-22 of the American health care system is that while many

people work " for the insurance, " when they become too sick to work and

are most in need of that insurance, they are most at risk of losing it.

 

This is particularly true of workers at small companies, which are

not covered by existing law. (The Family and Medical Leave Act, for

instance, only applies to workplaces with 50 or more employees.)

 

One employee at such a company, who asked that her name not be

used because she feared retribution from her former boss, learned the

significance of this distinction the hard way when she had a brain

tumor removed five years ago. Her employer, she said, " told me that my

tumor came at a really bad time for the company. "

 

The woman had recently received a significant raise, $20,000. Her

workplace was small - about a half-dozen employees - and a few months

after her illness was diagnosed, the group's insurance premiums

jumped. " My raise was rescinded, to cover the increase, " she said.

 

Experts fear that as insurance rates increase, even companies

large enough to be constrained by law will make personnel decisions

based on the cost of health care. Those costs, which were stable

during most of the 1990's, have increased at double-digit rates for

the past three years, said Glenn Melnick, a professor of health

economics at the University of Southern California.

 

Dr. Melnick thinks it is not coincidence that this environment led

Wal-Mart, whose health costs increased 15 percent last year, to

suggest what a confidential internal memorandum to the board of

directors called " bold steps. " If the company took action to " dissuade

unhealthy people from coming to work at Wal-Mart, " the widely leaked

memorandum said, the potential savings would be $220 million to $670

million by 2011.

 

The proposed method of dissuasion, as explained in the memorandum,

was to define every job so that it included some form of physical

activity ( " e.g., all cashiers do some cart gathering " ). Unfit people

would be less likely to apply and if they did apply, the company could

legally refuse them because they could not do the job as described.

 

There is similar " wiggle room " in laws requiring employers to

provide " reasonable accommodations " for employees, and here, too,

experts are concerned. " The key word when talking about accommodations

is 'reasonable,' " said Ms. Bond, the employment lawyer. " And the

employer gets to define that word. "

 

If employers remain overwhelmed by health care costs, they may see

this as an incentive to play hard ball, Ms. Bond and others fear,

hoping that employees with health problems will just give up and go

away, taking their expensive illnesses with them.

 

Navigating the Obstacle Course

 

Mr. Domitrovich suggested to his bosses that it was time that he

left sales, stopped traveling and became a mentor. The result was

" Cutco/Vector University, " a management training program run by Mr.

Domitrovich. His salary is only a fraction of his former commissions,

but he maintains his insurance.

 

" We wanted to do whatever we could for Marty, " said Bruce Goodman,

chief executive for Vector sales and president of Vector West. " Marty

is the conscience of our company. "

 

Cutco/Vector might not be able to make similar arrangements for

every ill employee, Mr. Goodman said, " but in Marty's case there truly

was never any consideration of should we fire him, should we put him

out to pasture. "

 

Ms. Abert, in turn, tried to stay at work. She became vocal about

her condition after her meeting with human resources, and she asked

the maintenance staff to change the doorknobs on the teachers lounge

and on her classroom so that she could open them more easily.

 

In the spring of last year, Ms. Abert's hands became seriously

infected and she was hospitalized for much of the spring. Since then,

she has been on long-term disability, which is a benefit available to

every district employee, even though it was not in her packet of

paperwork.

 

She will receive 80 percent of her income until she is 65, but she

will not receive insurance indefinitely. Her district policy has

already lapsed, and she will pay $498 a month under COBRA until that

too expires, next September.

 

Her unexpected ally in navigating the system was the same human

resources counselor who seemed so brusque at their first meeting.

" Once he saw I was really sick, he did everything he could to help, "

she said of Mr. Austin, to whom she now turns for advice.

 

Most recently, he told her not to return to teaching part time. If

she did, the pay would be less than what she now receives on

disability, though it would include insurance, making the equation

temporarily worth it. But, he said, were she to require disability

again, she would only be eligible for 80 percent of her part-time pay.

 

Ms. Abert has considered trying to return full time, but she

cannot figure out a way to fit her regimen of doctor's appointments

into a teaching schedule.

 

" I can't close the classroom door and say 'I will be back in an

hour,' " she said. " It's difficult being sick as a teacher. I guess

it's difficult being sick in any job. "

 

 

 

Go to Original

 

Healthcare for All, Just a (Big) Step Away

By Edwardo Portor

The New York Times

 

Sunday 18 December 2005

 

You may find it shameful that some 45 million Americans lack health

insurance. Well, by reallocating money already devoted to health

insurance, the government could go along way toward solving the

problem. But you may not like the solution.

 

Next year, the federal government expects to provide about $130

billion for Americans to buy health insurance. The amount is

substantial: it is equivalent to about 11 percent of all federal

income tax revenue and more than a fifth of federal spending on

Medicare and Medicaid. And it is growing fast: the bill is expected to

surpass $180 billion in 2010.

 

Nonetheless, this financing remains under the political radar

because it is provided indirectly - not as direct spending but as a

tax break that allows workers to receive health insurance coverage

from their employers without having to pay income taxes on whatever it

costs.

 

This provides a powerful incentive to businesses all over the

country. The subsidy - supplemented by an additional $11 billion in

deductions for medical expenses and billions more in similar tax

breaks for health insurance from states and municipalities - helps to

explain why 64 percent of Americans under 65 get health insurance

through their employers.

 

Although subsidizing health insurance may seem a worthy effort, a

positive contribution to the goal of universal coverage, it is among

the most inefficient spending in the nation's fiscal arsenal.

 

" If you had $150 billion to play with, you could come very close

to universal coverage, " said David Cutler, an economics professor at

Harvard. One reason that we are 45 million people short of that goal

is that the money isn't being spent on them.

 

According to President Bush's advisory panel on tax reform, about

half of the tax break for health insurance accrues to families making

more than $75,000 a year. More than a quarter goes to families making

over $100,000.

 

These families would surely hate to lose the subsidy. For a family

making $100,000 a year in, say, Los Angeles, the tax break cuts the

cost of employer-provided health insurance by about 35 percent in

federal and state income taxes. On a typical family policy costing

$11,500 a year, that is equivalent to some $4,000.

 

Still, the fiscal incentive isn't helping many of the people who

need it most. A report by the Kaiser Family Foundation says two-thirds

of the 45.5 million Americans who lacked health insurance in 2004

earned less than twice what the federal government defines as poverty.

(For a family of four, the poverty line is about $19,300.) In four of

every five cases, the uninsured made less than three times the poverty

level.

 

In addition to going to the wrong people, the subsidy as designed

promotes wasteful medical spending, encouraging the wealthy to buy

more insurance and to use more health services than they need,

according to the president's tax panel. And it may bolster premiums

across the board.

 

Altogether, the health insurance tax break exacerbates America's

medical dystopia: while the nation has the highest per-capita spending

on health in the world - about $5,400 in 2002 - 18 percent of the

population under 65 remains uninsured.

 

As part of a series of proposals to rejigger the tax code, the

president's tax panel issued a report earlier this year that suggested

capping the total that can be paid in pretax dollars at an amount

equal to the average health insurance premium in the country: some

$11,500 for a family.

 

But if the objective is to expand health care coverage, a bolder

option is available: focusing the bulk of the money on the bottom end

of the income distribution.

 

Added to what is already spent on Medicaid, this financing would

be roughly enough to make health insurance free for people earning up

to three times the poverty level, and perhaps somewhat more, said

Jonathan Gruber, an economics professor at the Massachusetts Institute

of Technology who has studied the efficiency of alternative methods

for financing health insurance.

 

To make insurance universal, two other things would be needed, Mr.

Gruber said. As soon as the tax break was eliminated, company-provided

health insurance would be likely to disappear, too. So some mechanism

would be needed to pool groups of people and to avoid leaving

higher-risk people to face enormous insurance costs. Such a mechanism

would probably make health insurance affordable for all. And to make

it universal, a mandate would be needed to make people buy it.

 

This isn't communism. The changes could happen under a public

health care system or one that is privately run.

 

The new universal insurance could be provided by government. One

simple way would be to extend Medicaid coverage up to the desired

income level and to require people above that point to buy into the

system according to a price scale that rose proportionately to income.

 

Because Medicaid has lower administrative costs than private

insurance, this would be efficient. But the new regime could be run

privately as well, to take advantage of the private sector's superior

track record on innovation.

 

The government could give tightly focused tax credits so that

lower-income people could buy health insurance on the market. And it

could organize pools by, say, requiring insurers to charge the same

for similar policies sold to people of the same age group who live in

the same area.

 

Regina E. Herzlinger, a professor of business administration at

Harvard Business School, notes that the Swiss have such a system:

privately provided health insurance priced by age and residence and

subsidized at low incomes. This, she said, gives the Swiss top-notch

health services, universal health insurance and a medical bill that

tops out at 10 percent of the nation's output, compared with 15

percent in the United States.

 

Some of these ideas are beginning to gain traction in America,

too. Massachusetts is considering a law that would make health

insurance mandatory. It would expand Medicaid to cover families in the

state that make less than twice the poverty level and offer tax

credits on a sliding scale up to four times the poverty line. It would

also provide for creation of insurance pools for people who don't get

coverage through employers.

 

This health care revolution, however, is unlikely to catch on

nationally anytime soon. For starters, losing the tax break on

employer-provided health insurance would be tremendously disruptive

for the millions of Americans who get their insurance through their

jobs. Perhaps most important, it would force higher-income families to

buy health care without the tax break; that idea is probably as

politically suicidal as abolishing the mortgage tax deduction.

 

" I don't think anybody would dispute the economics, " Mr. Gruber

said. " I think the dispute would be over the politics. "

 

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