Landay - Be Prepared: The Complete Financial, Legal, and Practical Guide to Living with Cancer, HIV, and other Life-Challenging Conditions

The author and publisher have provided this e-book to you for your personal use only. You may not make this e-book publicly available in any way. Copyright infringement is against the law. If you believe the copy of this e-book you are reading infringes on the authors copyright, please notify the publisher at: us.macmillanusa.com/piracy.

Please note that some of the links referenced in this work are no longer active.

Contents

In memory of
David E. Hankermeyer

Acknowledgments

Although my name appears as author, Be Prepared is the result of the same kind of team effort I espouse in the text. Seldom were more than two of us together, in person or on the telephone, but the input and cross-pollination was an effort of an incredibly gifted and caring team. I was lucky to be the captain.

Be Prepared would not exist were it not for the enthusiasm, support, and gentle guidance of my editor, Bob Weil. The excitement of the St. Martins family has been gratifying, especially Steve Boldt, John Karle, Becky Koh, Andrew Miller, John Murphy, and Sally Richardson.

The first-rate research team, Miriam Gladden, Andrea Ovanesian, and Thomas White, was put together by Elizabeth Humphreys, Esq., and was led by Jim Williams, Esq., who also acted as sounding board, editor, and adviser.

Everyone at National Viator Representatives, Inc. (NVR) pitched in to help at one point or another, including Cory Crayn, Rob Green, Keith Limitone, George Martino, Lenore Raeger, Douglas Ramirez, and David Wilson.

I was lucky to have the following team of professionals who so willingly gave of their time gratis to share their knowledge with youin interviews, review of drafts, sharing thoughts, or all of the above. In alphabetical order, they are Diane Blum, C.S.W., Donna Brown, Kimberly Calder, M.P.S., Jacques Chambers, Jerry Chasen, Esq., John Cutler, Esq., Kenneth Doka, Ph.D., Richard Feldman, Esq., Carl Galli, Charles Garfield, Ph.D., Audrey Gartner, Eli Goldbaum, Rhonda Villard Growney, C.L.U., C.F.P., Leslie Jameson, Ph.D., Ronnie Kasowitz, Barry Katz, C.P.A., Don Kaufman, Donald Lefari, Esq., Arthur Leonard, Esq., Thomas P. McCormack, Bernie McKinnon, Lee Miller, Thomas Moorhead, Esq., Michael Naimy, Jon Nathanson, Helene Novin, Neil Novin, M.D., Robert Prull, Capt. Jerry Rosanbalm, Richard Scolaro, Esq., Debbie Shulman, Ph.D., Corinne Smith, Ph.D., Bob Stella, Janet Stokes, Kathy Strickland, Sam Wasserman, Julia Wellin, M.D., and Catherine Nellis White.

My support team consisted of my close friends across the country who provided encouragement, listened to my moaning when the work and deadlines seemed overwhelming, and provided suggestions from their own expertise. My sister Ellen Novins loving support has always been important in my life. My friend Erma Bombeck gave me inspiration and encouragement. Barry Shulman, Esq., not only provided daily friendship, advice, and encouragement, but also access to the expertise of his law firm, Scolaro, Shulman, Cohen, Lawler and Burstein, P.C. Sheila Zubrod was instrumental in expanding my thoughts and shared her creativity. Paul Rice graciously and lovingly bore the brunt of my obsession with this work.

Andrea DiLascia Busk, Esq., overcame her own pain to share experiences and help edit this work.

Which brings me to Jeffrey Barnes, Esq. Jeffrey worked with me for the past few years helping to conceptualize, narrow the massive amount of information and scope of this book, and act as my conscience, editor, and sounding board.

Last, but not least, are the many people living with a life-challenging condition who shared their stories and another group (many of whom Cancer Care, Inc. kindly assisted me in locating) who took the time to read a draft of the text from a readers point of view. For the sake of their privacy they all live in this book under assumed names.

Words fail to express the deep appreciation I have for each of you. Thank you.

Introduction

It seems as if most of my life has been spent preparing for writing this book.

My father was a healer at heart. Although he was forced to abandon his premed studies after my grandfathers early death, he and my mother found an outlet for their shared desire to take care of people through their insurance business. Anticipating continuing the family business, I majored in insurance at the Wharton School of Finance and Commerce and went on to Harvard Law School.

I learned immediately after graduating law school that my father had lung cancer and wasnt expected to live more than a year. In those days, people whispered that he had c or the big C. He had spent his life helping other people, but given the times, he didnt wish to go public about his condition. We found little practical information available, particularly about dealing with the side effects of his surgery and treatments. We seemed to be living in a vacuumisolated from the world wed known and not able to access other people with cancer. If there were any mechanisms for support, we didnt find them, and therapy was only for the mentally ill, not for people who were having a difficult time coping. At the same time, we held out an everythings okay face to friends and colleagues. Although home care was much less expensive than hospitalization, the health insurance company wouldnt agree to it since it wasnt provided for in the policy. Worst of all, in his final days his discomfort was unnecessarily prolonged by the health care system.

As a caretaker for a loved one with leukemia a few years later, I was again faced with the reality that, while there was more practical information available, we still had to navigate a vast expanse of uncharted territory. Since in those days doctors were still treated as dictators, we had to push to obtain information on alternative therapies and their potential consequences. With no guidelines, facing decisions about disability and when and how to tell his employer was agonizing for all of us.

I had practiced law, run a life insurance company, and was producing a show on Broadway when the AIDS crisis hit. The theater community and my friends were devastated by the disease. It made us all want to do something. In addition to caring for friends one-on-one, I became a founder of Broadway Cares, the theatrical communitys response to the disease.

My life partners bout with the disease was even more challenging. Choices for treatment were limited, and the messages as to which of those to use were mixed. The condition was still new and the potential life span was uncertain. We had to fight the insurance company when it refused to pay for an expensive treatment it called experimental. Home care had become prevalent and sophisticated in our area, and daily nurses visits replaced much of the need for hospitalization.

By then, the late 1980s, many books and avenues were available for emotional support, and Guardian Organizations were offering some practical advice, but there was still no easy road map to help guide us over the rough practical terrain of living with a life-challenging condition. In an effort to realize some lifelong dreams, we complicated matters by purchasing a new home, a fixer-upper. The purchase was possible because, as a lawyer, I knew that the lending banks could not refuse a mortgage based on the fact that part of the income that justified the mortgage came from a disability policy rather than a traditional job. We also took an extensive trip around the world. Even though we had both traveled a lot, we still had to think through the practical aspects of the trip very, very carefully.