Landay became an activist in the early days of AIDS. He was a founder of Broadway Cares/Equity Fights AIDS, a board member of several AIDS organizations (including the National Association of People With AIDS and National AIDS Fund), and Board Chair in New York City of Community Research Initiative (the predecessor to ACRIA), a grassroots organization which conducted medical research about HIV/AIDS.
After the loss of his life partner, Landay had a strong desire to help keep people from constantly reinventing the wheel with all the blind alleys and stress involved. As a result, he wrote Be Prepared: The Complete Financial, Legal and Practical Guide For Living With HIV/AIDS, Cancer and other Life-Challenging Conditions, published in 1998 by St. Martin’s Press. (Both Mr. Landay’s parents died of cancer). His education at Harvard and Wharton in law and insurance, with more than 20 years experience working with people with life-changing conditions, forms the basis of SurvivorshipAtoZ.org, with all its practical information for the new normal inherent in life after a diagnosis.
The comprehensive website was launched on June 11 with a segment on ABC’s Good Morning America with cancer survivor and co-host Robin Roberts. (The interview can be viewed on the site’s home page under “In The News”). The non-profit site, with initial funding from Johns Hopkins and the City of New York, provides people with the financial, legal, and practical information that answers the questions that come charging after a diagnosis, as well as those which come up 5, 10 or 20 years later, in unprecedented breadth and depth—including form letters and how to complete government forms. The site also offers a free computer-generated report (including videos) personalized to the user’s health, economic, and social situation. The site also explains why, in spite of standard advice, High Deductible Health Plans are good for people with cancer and other life changing conditions.
According to SurvivorshipAtoZ.org, published reports note that more than 30,000 sites provide medical information. SurvivorshipAtoZ, however, aims to avoid all the time and stress of making mistakes and using trial-and-error by integrating information from a practical, legal, and financial standpoint, including personalized information from visitors to the site who need help. The website would like people to know that:
- Over 50% of bankruptcies are due to medical bills—including people with health insurance—and that there are steps people can take to minimize the financial pain.
- Survivors can still get health insurance and life insurance in spite of a health history.
- Only one third of the people who apply for Social Security Disability Insurance get it, but chances can be increased by legally working the system.
When it comes to work:
- People no longer have to be afraid of not being hired or unable to change jobs because of a pre-existing medical condition.
- There are techniques for negotiating accommodations needed because of a health condition (such as time off to go for treatment).
- There are easy steps to take while people are working to make life on disability better if a condition becomes disabling.
- Up to 70% of doctors ignore end-of-life requests, but proper planning can help avoid the situation.
- Pain and depression do not have to be part of an illness.
In a community-focused section, user participation is encouraged to provide practical tips, local information, and resources. Message boards are set up by category (insurance, employment, etc.) with specific boards for business owners and for people who are self-employed. Users will be asked to donate to help keep the site advertising free to avoid any potential conflict-of-interest.
(Editor’s note: The above was taken from a press release from SurvivorshipAtoZ.org.)