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David S. Landay: A Survivor's Best Friend "I'm very sorry. You've tested HIV positive." These seven little words turn lives upside down. As waves of emotion amplify concern for treatment, insurance, employment and relationships, the same question breaks to the surface: What in the world am I going to do? UTAC Board member David S. Landay provides the answer in a groundbreaking on-line resource aptly named Survivorship A to Z.
David never planned to become a subject matter expert in disease management. A graduate of the Wharton School of Finance and Commerce and Harvard Law, he had successful runs as a theatrical lawyer, an insurance executive and a Tony-nominated Broadway producer. Then AIDS happened. "All of my friends were getting sick. I faced the very real possibility that something was in my system that could become something horrible," he recalls. "I learned everything I could about the disease (which at that point wasn't much) and its treatment (which was pretty much all experimental). I turned to the East to see if there was an answer for me there. That led to the understanding of the importance of an approach that took all aspects of a person's life into account. I resolved to do something to help other people." David began by gathering kindred spirits within the theatrical community where far too many colleagues suffered the ravages of disease. "Several organizations already provided care and support services. We didn't need to re-invent the wheel," he said. "But we had access to an audience through whom we could raise funds and awareness. That was our focus." Over the past 20 years, Broadway Cares/Equity Fights AIDS has generated over $100 million to support the social service work of The Actors' Fund and other AIDS charities. Given his background, friends turned to David for financial, legal and practical information. He saw first hand how badly people with life changing illnesses needed guidance to manage their medical care and personal affairs. Over half of the personal bankruptcies in this country have to do with medical care, even for those with insurance. David received permission to use the work of David Peterson, a certified financial planner, as the basis of an easy-to-use handbook entitled Be Prepared, The Complete Financial, Legal and Practical Guide To Living With Cancer, HIV/AIDS And Other Life-Challenging Conditions (St. Martin's Press). "The more I worked on this project, the more I realized how many aspects of coping with a difficult diagnosis are similar no matter what the disease. For instance: navigating healthcare, insurance and government benefits; handling work issues; managing relationships; attending to emotional health; and, planning ahead. Yet folks typically looked to disease-specific organizations to provide assistance. It made for a lot of duplication of effort, with no single disease providing comprehensive, in-depth information," he said. "In a climate where every hour, every dollar is precious, we couldn't afford the waste. I saw a chance to help a lot of people through the process – which, in the case of HIV, is literally helping for the rest of a person's life." The book and a seminar series gradually evolved into a comprehensive on-line resource that provides best practices for disease and life management. For HIV, the site starts with diagnosis and continues through work years, retirement and end-of-life. The site even includes a computer-generated, personalized guide. Survivorship A to Z also leverages the materials David integrated for HIV and repurposes them for other diseases, starting with the common forms of cancer. "People want a site that's tailored to their disease and circumstances. We can accommodate their wishes," he said. "Through partnerships with disease-specific organizations like the American Cancer Society, we create a delivery system that brings the sum total of our experience into the privacy of peoples' homes, 24 hours a day, 7 days a week." As a former Board member of the National Association of People with AIDS, the National AIDS Fund and the AIDS Community Research Initiative, David has a broad network to help identify needs and come up with practical advice. Service on the Board of Until There's a Cure® Foundation (UTAC) provides the means to continue support for prevention education, care services and vaccine development. "Through product sales, media campaigns, partnerships and special events, UTAC is doing everything it can to curtail the spread of this insidious disease," he said. "With Survivorship A to Z, I take comfort in knowing that I can make life a little easier for people caught in its snare." Download this story as a PDF file. » Home | Shop | Donate | Get Involved | Grants | Partnerships | Retail Program |
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