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Cancer Patients Battle On Two Fronts
Story Number is : 121809100
By Geraldine A. Collier
Senior Correspondent
Hospital Newspaper

Ann Stewart, patient advocate director for Commonwealth Hematology-Oncology, working with Commonwealth Atrius Cancer Center, counsels a cancer patient.
Ann O’Leary-Ortiz-was one of the one million Americans diagnosed with some form of cancer last year, and, like 40 percent of those new cancer patients, she was a working-age adult at the time of her diagnosis in 2008.

Actually, she’s still a working-age adult.
She just doesn’t have a job any more.
Ms. O’Leary-Ortiz, then principal of the Middle School in Auburn, Ma., was absent from her office from Nov. 25 to Dec. 1, 2008 (mostly Thanksgiving school vacation) for breast cancer surgery and its aftermath. Again, her office chair was empty from Jan. 14 to 26, 2009, while she underwent further treatment, and from April 8 to 13, 2009 for further surgery and its aftermath.

When she returned to work April 13, she was handed a written notice that her contract would not be renewed for the following year.

In a complaint filed with the Massachusetts Commission Against Discrimination, Ms. O’Leary-Ortiz alleges she was told by the superintendent of the Auburn School District, that she was not “an appropriate fit for the Middle School or the Leadership Team at this time.”

Ms. O’Leary-Ortiz alleges in her complaint that despite being given “highly rated” performance evaluations, she was let go following the absences for surgery and recovery. The facts demonstrate, she alleges, that the Auburn Superintendent of Schools “did not renew her contract because I have breast cancer.”

As the time this article is being written, the Auburn Superintendent of Schools has not yet filed a formal response to the statements of Ms. O’Leary-Ortiz.

Disability Rule Expanded
Until Jan. 1, the Americans with Disabilities Act (ADA) considered cancer as a “disability only when it had a substantial impact on one of a person’s major life activities,” said Robert Sanders, director of the Boston Area Office of the U.S. Equal Employment Opportunities Commission (EEOC) – the people who enforce ADA regulations regarding employment.

“As of Jan. 1, that standard has been relaxed,” said Sanders. The definition of cancer as a disability was expanded to include patients whose cancer was substantially limiting sometime in the past and/or a patient whose cancer does not significantly impact his or her major life activities, but who is treated by an employer as if it does.

In all three of these instances, an employer cannot take adverse action against a cancer patient, but, instead is required to make “accommodations” for the employee. In 2008 there were 707 complaints from cancer patients who alleged they were being discriminated against in their employment because of their illness. With the liberalization of the law, presumably those figures will increase significantly in 2009.

As for absences from work, ADA regulations would require an employer to “make reasonable accommodations for that person,” added Sanders. And under the Family and Medical Leave Act, employers must grant an eligible employee up to a total of 12 work weeks of unpaid leave during any 12-month period, if he or she is unable to work because of a serious health condition.

Since there is no law requiring an employer to pay an individual who is absent because of illness (employers may, however, have a paid sick leave policy) many cancer patients find themselves unable to pay for everyday bills.

They not have enough money to pay their health insurance premiums. Some people can’t meet the large out-of-pocket costs to cover expensive cancer treatments, or they may exceed the annual or lifetime caps on insurance benefits, or they may run into other limitations or exclusions in their health insurance policies.

Financial Hardship
A Harvard University study has found that overwhelming medical expenses were involved in 50 percent of all bankruptcies and that 68 percent of the people who filed for bankruptcy had health insurance

The total cost of cancer care can range from more than $2,000 to more than $7,000 per patient each month. According to Dr. John Seffrin, chief executive officer of the American Cancer Society, one in five cancer patients will spend virtually all their life savings to get the treatment they need.

“We know we were very lucky,” said Barbara D’Amico, “to have health insurance that would cover the bills.” (Barbara’s medical treatment is discussed in the Consultants Corner Column on Page).

Insured through her husband’s employer, Barbara’s medical charges for surgery and follow up treatments amounted to $250,000, a staggering sum of money. How do these charges mount up to so much? Well, an anti-nausea medication to keep Barbara from throwing up after her chemo therapy – a prescription of just ten pills – carried a price tag of $850.

While her insurance was terrific for paying most of her bills, Barbara and her husband were surprised that the insurers refused to pay for the anti-nausea pills. After a staff member of the Commonwealth Atrius Cancer Center, in Weymouth, Ma., contacted Barbara’s insurers the bill was covered.

Cancer treatments sapped Barbara’s strength. “I stopped working because the doctors told me that my treatment would be so grueling that I wouldn’t be able to work. They suggested that I take a leave prior to the chemo and radiation which started on day one of treatment.”

Since Barbara was a contractual employee, she had no benefits like vacation time or sick days which could have helped with her expenses. With Barbara not working, her husband’s salary had to carry the household expenses.

When Barbara went back to work six months later – at what had been a fulltime job as a project manager for a construction company – her employer reduced her hours to a part-time schedule, even though her doctors wrote letters saying she was physically able to handle a full-time schedule.

Barbara had to find another part-time job to supplement her wages from her project manager’s job, but later on, she was lucky enough to find a fulltime job elsewhere.

Insurance Concerns
Since her health insurance was part of her husband’s compensation package at his job, switching jobs for Barbara was not a problem. She would have had concerns, she said, that a new employer’s insurance would not have covered her because of her cancer. Still, she worries that her husband’s employer might be penalized with an increase in premiums because she is on that company’s insurance rolls. And, while her husband has no intention of changing jobs, if he did, she wonders, would a new employer’s insurance cover Barbara?

However, her concerns may not be justified. The Health Insurance Portability and Accountability Act of 1996, a federal law, limits the ability of a new employer plan to exclude coverage for preexisting conditions.

HIPAA also provides additional opportunities to enroll in a group health plan if you lose other coverage or experience certain life events and prohibits discrimination against employees and their dependent family members based on any health factors they may have, including prior medical conditions, previous claims experience, and genetic information.

HIPAA also guarantees that certain individuals will have access to, and can renew, individual health insurance policies.
The federal healthcare reform package now being debated in Congress may, if it passes, contain even stronger protections for, not only cancer patients, but all individuals.

Under a current federal law known as COBRA, a former employee can generally continue health insurance coverage for up to 18 months if he or she pays the premiums. Quite often it’s difficult for someone who isn’t working to pay the premiums, but a temporary federal subsidy will pay 65 percent of the premiums for nine months for people who lose jobs between Sept. 1, 2008 and the end of 2009.

This benefit applies only to those who have worked at companies with 20 or more workers, by some states have their own laws to give small business employees a chance to continue coverage.

However, when your employment ends you have only a 60-day window in which to apply for COBRA.

Help Available
Now, remember the assistance Barbara and her husband received in dealing with the insurance company’s denial of coverage for the $850 anti-nausea pills she desperately needed while undergoing chemotherapy.

Many cancer treatment centers have patient advocates who can help find resources that can help “lessen the gap or eliminates whether it’s for medical care, prescription coverage, to take care of the mortgage on your home or pay the utilities or help with transportation,” said Ann Stewart, patient advocate director for Commonwealth Hematology-Oncology, working with Commonwealth Atrius Cancer Center. “I would like the public to know there are many resources and assistance available to them when they face a diagnosis of cancer.”

First, a patient needs to discuss with his or her employer’s human resources department or his or her union whether or not a “short-term disability” package is offered and whether or not he or she is eligible for it. Paid vacation time or sick time can cover absences. Some unions allow other employees to give a day or two of their sick time to the patient.

Cancer patients too sick to work may apply for (SSI)Social Security Income, and should “if everything is going smoothly and the paperwork is all in, take no more than six weeks,” according to Ms. Stewart.

In Massachusetts, EAEDC (Emergency Aid for the Elderly, Disabled and Children) provides cash benefits to those not able to work due to physical or mental incapacities that will last at least 60 days. Other states in the northeast may have similar programs.
“Our core commitment to our patients is to work with them so they can concentrate on the treatment in partnership with our physicians. We work with them to eliminate any concerns about financial barriers,” said Ms. Stewart.

Imaging Sometimes Restricted
A lack of affordable health insurance also impacts people getting screened for cancer. People who have private insurance are more likely to get screened and thus get a diagnosis earlier in the course of treatment than people without health insurance.
It doesn’t always work that way, of course.

My friend Ellen has, what most people would say, is excellent insurance coverage. Yet, when Ellen – a woman in her 50s who has a sister fighting breast cancer and who has dense, hard-to-screen-with-a mammogram breast tissue – was urged by her doctor last year to get a breast MRI study. She did, but her insurance company refused to pay the almost $3,000 bill for it even though she met their criteria for a MRI-breast screening. Not only that, but her insurance company had pre-approved the screening.

Down to the last of several appeals, Ellen finally got her insurer to pay the bill. But, when the time for another MRI screening rolled around, Ellen went for a mammogram instead – scared that this time she might be stuck with the bill, which she could not afford. Even though the mammogram detected no sign of cancerous cells, Ellen’s mind is not at ease.

Ask For Help
The Kaiser Family Foundation and the American Cancer Society have put out a report called “Spending to Survive: Cancer Patients Confront Holes in the Health Insurance System.” It contains stories of people who had health insurance when they were diagnosed with cancer, but whose coverage stopped after patients ran into limitations, exclusions, and lifetime caps on benefits long before they finished treatment.
According to Ms. Stewart, “unfortunately most people don’t know what is or isn’t in their health insurance policy until they have to use it.”

Readers who need more information on how to deal with cancer costs can visit the American Society of Clinical Oncology website. The American Cancer Society has a website entitled “Health Insurance and Financial Assistance for the Cancer Patient.” Medicare also has a webpage that offers website addresses for some State Health Insurance Programs.

“You need to ask for help,” said Ms. Stewart.
“Partnership and preparation is an essential key to cancer treatment,” added Ms. Stewart. “You should review your health insurance policy for possible gaps and discuss with your employer benefits available to you while in active treatment. Then you need to center your attention on working with your medical team on an agreed treatment plan.

“We need to remove the “fear” of the diagnosis of cancer. We need to shout out that we can and do have a very active social, work and family life after treatment.
“We are fighting back and not only that, we are winning,” she added.

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