Message from the Executive Director

Spring 1997

In this issue we have included an article about the limitations of managed care (see Managed Health Care: Gambling on Coverage to Save on Costs). It is important for those of us who use the health care system so frequently, to share with each other our experiences and expertise that come from managing problems that arise. In this way we can continue to educate each other and remain vigilant in our demands on employers and insurers to provide the coverage we need to keep ourselves, our spouses and our children healthy.

Below I have included a story from my own experience that once again reminds us of the limitations of health coverage. Now more than ever, we must tell our stories, study our health policies, and look into the future to determine what kind of policies we will need. I urge you to use CF support groups, CF conferences and newsletters, Cystic-L and the media to remain abreast of the changing world of health care.

Our son Carl, 19, recently had his first experience with the insurance side of having CF. My husband, Rob, received a message from his company's benefits administrator asking if we wanted to put Carl on Cobra because he had turned 19. Rob, who carries the health insurance for our family through his employer, was informed that Carl, because of his age, would have to be covered under Cobra unless he was enrolled full-time in college (taking at least 12 units at an accredited college or university). Carl had planned to enroll in college as a part-time student and to continue working part- time in a local biotech firm. Carl's physician felt that attending college full-time and working part-time would be too strenuous for his health because he knew that Carl was also spending two to three hours per day caring for his health.

If Carl attended college part-time and worked part-time as he preferred, our family would be required to pay for his health insurance via substantial monthly Cobra payments available for only three years. If Carl attended college full-time, he could remain on his father's health insurance until he turned 23, but he would lose out on valuable on-the-job training and the enjoyment he derived as a productive member of our society. Finally, if he worked full-time, he could earn a salary, contribute to his company and carry his own health insurance through his employer, but long-term, his career choices would be limited if he didn't complete his degree. To come to a decision, we talked to Carl's CF physician and Rob's company's benefits administrator to get their suggestions. It was agreed that Carl's doctor would write a letter to the benefits administrator petitioning his health insurance company for a waiver so that Carl would be able to take fewer college units due to his health situation. The company agreed to do this until his next birthday (September, 1997) at which time his situation will be re-evaluated. We certainly felt lucky that Rob's employer was willing to discuss Carl's needs with us and respond accordingly. Still, we feel vulnerable not knowing what will happen next year and if we will be able to find an acceptable and affordable solution.

Selecting health insurance is important for everyone, but it is absolutely critical when the insured has a chronic illness like cystic fibrosis. Health insurance companies should not have the power to limit the choices of young adults or determine their lifestyles. As a parent and as the director of CFRI, I know I must take a proactive role in working with the insurance system that our son has to live with. Simultaneously, we at CFRI are also looking for ways to encourage others who are struggling with managed care or other insurance systems. Beyond this issue of CFRI News, we plan to offer seminars on health care and insurance at our annual conference in August. Stay tuned! Stay vigilant! Stay in touch!


Ann Robinson and Kathleen Flynn

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