From the survivors viewpoint, Ms.Hoffmans paper addresses a critical need, expressed in both its title and its conclusions: Medical professionals who treat cancer patients need to be aware of the anxieties faced by those diagnosed with cancer so that they can help their patients prepare for and respond to the employment and insurance sequelae of cancer.
Stress Over Employment Has Lessened
Ms. Hoffman recounts how the plight of the cancer patient in the workplace has been mitigated by the enactment of federal legislationthe Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA). Through those acts and resulting regulations and court cases, it has become fairly clear that cancer is a disability and that covered employers must not discriminate against those who have it. Just the opposite; they must make reasonable accommodations for cancer survivors. Thus, for individuals dealing with cancer who have or are seeking covered employment, job stress is not the factor it was only a few years ago.
However, new laws are not the only changes that are helping cancer survivors in the workplace. As cancer has come out of the closet, as early detection and treatment have improved prognosis, and as more of us become cancer survivors ourselves or have survivors in our families, the stigma is disappearing. That is not to say it is completely gone.
This survivor still encounters friends who, knitting their eyebrows and exhibiting a countenance of compassion, ask with trepidation, How are you? Until this attitude toward cancer is eradicated, survivors, especially those working in small enterprises not covered by the ADA, will experience discrimination.
Nor is the problem limited to employees. Professional personal service providers, such as physicians, accountants, and lawyers, have seen their practices wane when knowledge of a malignancy reached their patients or clients.
The ADA Does Not Protect Everyone
I have also learned that there is a significant segment of the population that uniquely does not enjoy the discrimination protection of the ADA. Those of us who are neither in the armed forces nor a dependent of a service person might assume, especially if our knowledge of the armed forces is personal history, that the military takes care of its own. However, that reassuring statement may only be historical. As government dollars become more precious, the defenders of our liberty may be becoming less so.
Consider the continuing saga of a serviceman who suffered a malignant primary brain tumor. The ADA does not protect him, and reasonable accommodation for his limited impairments following surgery (ie, infrequent focal seizures and some cognitive problems) is not ensured. At present, he performs essentially the same tasks he carried out before the service placed him on temporary retirement, just a door away from where he worked as a serviceman. The temporary retirement status, subject to review every 18 months, was gained only after the family hired a lawyer and appealed a service medical board decision to separate him without benefits.
This family is being told by those with long experience in the armed forces that a tougher stance is being taken throughout the armed services with respect to service-connected disabilities. Being separated from the service, without benefits, is a scary prospect for such a cancer survivor. Not only does cancer require diligence in periodic follow-up even after primary treatment is concluded, but the specter of recurrence always looms. The potential prospect of facing all of this without insurance is beyond frightening.
Insurance Problems Persist
This servicemans experience demonstrates that the terrible twins, employment and insurance, are often joined at the hip for cancer survivorsno employment, no insurance. However, as Ms. Hoffman points out in her introduction, insurance problems for cancer survivors have not diminished like those pertaining directly to employment. To the contrary, as she notes, the dramatic shift from fee-for-service to managed care plans has ushered in a stressful, frustrating period of decreased access to ever-improving oncology care.
Ms. Hoffman does point to some federal tools that the cancer survivor can use to try to gain and utilize medical insurance coverage. For example, the ADA requires that employee insurance coverage, if provided, be nondiscriminatory. Also, the Health Insurance Portability and Accountability Act (HIPAA) allows qualifying employees to change jobs without losing their coverage, even if they are cancer survivors. The Comprehensive Omnibus Budget Reconciliation Act (COBRA) ensures covered employees the opportunity to continue group medical coverage for themselves and their dependents after voluntary or involuntary termination of employment.
The final federal tool Ms. Hoffman describes is the Employee Retirement and Income Security Act (ERISA), which she characterizes as a double-edged sword. That is because, although ERISA prohibits an employer from discriminating against an employee, it also preempts state courts and legislatures from holding self-insured HMOs liable for medical malpractice. This edge of ERISA cuts deeply because the majority of health plans are now self-insured.
Aside from the ERISA preemptions, Ms. Hoffman acknowledges that states are helping cancer survivors with their insurance rights. However, she predicts that comprehensive federal legislation will be necessary to ensure that cancer treatment benefits are medically, not economically, determined. The news out of Washington suggests that legislation in this direction is at least in the congressional hopper.
Because Ms. Hoffmans paper restricts itself to employment and private insurance rights, it does not address the plight of a mushrooming groupthe senior population. Although employment issues are normally not a burden for older cancer survivors, questions about how they will pay for increasingly expensive prescription drugs, whether they can afford the increasing costs of Medicare Part B insurance and the similarly rising costs of Medigap insurance, along with serious questions as to whether their cancer treatments will be covered, are all worrisome. Those seniors who may already have elected an HMO under the Medicare + Choice program find their care options to be as controlled as those of younger individuals.
An Ounce of Prevention
Suggesting that persons diagnosed with cancer and those who might have to deal with the disease in the future should not rely solely on the courts to protect their employment and health insurance rights, Ms. Hoffman, in line with the old adage about an ounce of prevention suggests a number of self-help procedures people may employ to protect a job, secure a new one, and have and enjoy the benefits of health insurance coverage, even if they have already received a cancer diagnosis.
The proverbial ounce of prevention is what this country must adopt as the theme for health care of its citizens. This mind set must replace the fix it mentalitywith its astronomical expense in both money and human resourcesthat has too long been the habit of both patients and insurers. Certainly, we know that prevention and early detection are the keys to reducing the cancer burden today.
Reading Ms. Hoffmans paper should sensitize cancer professionals to the fact that the stresses caused by agonizing hours of waiting for test results and by learning that ones life plans may be seriously foreshortened are not the only sources of anxiety among cancer survivors. Equally stressful are concerns over whether they can keep or find a job in light of the illness and whether there will be adequate health insurance coverage to pay for the treatment that will be required to manage and hopefully cure the disease. All of these stresses cannot help but depress the cancer survivors immune system at a time that this system is sorely needed. One component of treatment, therefore, should be to help patients cope with these stresses.