Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program
“Issues Concerning Employment & Insurance” a personal reflection by Mary Zapor
Pancreatic Cancer Action Network, ACOR
Research efforts during the past 30 years have given the American medical community many more tools to combat cancer more successfully. This has resulted in a tripling of the number of cancer survivors from 1971 to 1999. However, aggressive treatments such as cytotoxic agents, radiation, and other drugs or types of treatment are the mainstay in fighting many types of cancer. Although these treatments may rid the patient's body of cancer cells, they may also exact a large toll. Often the patient continues to feel exhaustion, pain, or suffer other effects of treatment long after their active treatment ends. The treatment may cause "late effects," such as other cancers, to occur in the future, sometimes decades after the initial treatment ceases. Thus, a patient may face even more treatment and more stresses long after their first battle with cancer is over.
In today’s economy, most Americans have obtained health insurance through their employers. As survivors of childhood cancers age and are no longer eligible for coverage under their parents' policies, they may not be able to obtain health insurance on their own. Even though childhood survivors have the right to continue their parents' health coverage for a while under COBRA, if they can afford the premiums, at some point they may be subject to pre-existing condition exclusions in their own health coverage.
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) has helped ensure that pre-existing conditions may not be excluded in certain new health policies if the gaps in coverage are relatively short. However, childhood survivors may at some point have to choose between going to graduate school full-time and getting a full-time job in order to have health insurance without pre-existing condition exclusions. Some states have also helped bridge this gap by passing laws that prevent the exclusion of pre-existing conditions in certain employment-related health insurance plans. Even so, cancer survivors may not be able to buy life or health insurance, and the financial security of the cancer survivor and his or her family can be greatly impacted as a result.
Adults face many of the same problems as childhood survivors, except there may be additional economic pressures. Even if doctors are able to successfully combat an adult's cancer, they may not be able to do so within the time period permitted by an employer's leave policy. The federal Family and Medical Leave Act provides additional relief in many instances by giving certain employees the right to take up to 12 weeks of unpaid leave for a serious medical condition, such as cancer. If the employee cannot return to work at the end of that time, however, they can lose their job simply because they needed treatment or additional time to recover. The problem can be compounded further if the cancer patient needs help during their treatment, and other family members must also stay home from work to provide assistance or support.
If the primary or sole breadwinner is stricken by cancer, the entire family suffers the economic effects. Without a steady income, the family's financial resources can be inadequate to pay for the necessities of daily living, let alone medicines and expensive treatments. A prolonged illness, treatment, or recovery period can result in the loss of not only income, but also the family's health insurance coverage and any life and disability insurance benefits provided by the patient’s former employer. If the family does not have income or insurance benefits, they may not be able to obtain even the most basic or follow-up care that is needed to diagnose, treat, cure, and monitor their conditions. It should be no surprise that one-half of all of the bankruptcies filed in this country are a result of a medical diagnosis.
Some cancer survivors may never be able to return to work, or may not be able to perform work at the same level of skills as they did previously. Treatment may have interfered with their cognitive, cardiovascular, and pulmonary function. A survivor may be more tired or experience more problems with recall. They may be less able to multi-task, learn new functions, comprehend material, make decisions, or work with numbers. In addition to other side effects of treatment, they may experience pain, or may be less mobile or less able to communicate clearly.
Employers may be less understanding of a cancer survivor's performance because of the misconception that a cancer patient is "cured" after treatment. Once treatment stops, an employer's sympathy may be replaced by a renewed expectation that the employee/survivor should be able to return to full performance. Although an employer has a right to require that its employees be able to perform the essential functions of their positions, every employer needs to be aware that the side effects of the treatment may permanently alter the patient's ability to work as productively as they did previously. Therefore breaks or other accommodations may be reasonably required for the employee who is also a cancer survivor.
There is no question that there is an impact on the economy of this country because of cancer. However, the costs of cancer survivorship are not as obvious. Not only are healthcare prescription drug and insurance costs themselves a factor, but there are the hidden costs of having employees missing time from work to go to follow-up evaluations or to provide assistance to other family members. Additional economic costs are incurred if the side effects of treatment prevent employees from working full-time or even part-time. There are also the often- unexpected costs associated with late effects. In an environment where health insurance is supplied most often through employment but cancer survivors may not be able to return to work, it is imperative that we find a way for cancer survivors to have access to adequate and affordable care to monitor their conditions after their treatment.