Important note: Information in this article was accurate in 2008. The state of the art may have changed since the publication date.
November 14, 2008
For More Information Contact: David S. Landay (212) 586 5600; dlanday@SurvivorshipAtoZ.org
SurvivorshipAtoZ.org was launched on June 11 with an announcement/segment on ABC's Good Morning America with cancer survivor, co-host, Robin Roberts. The ground breaking nonprofit site, with initial funding from Johns Hopkins and the City of New York, provides people with HIV/AIDS, cancer, and other life changing diseases, 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, how to complete government forms, and what to say/not say when talking with an insurance company. The site uniquely includes a free computer-generated report personalized to the user's health, economic and social situation from which a person learns about all the (often unexpected) aspects of his or her life affected by a diagnosis. The report changes as the person's circumstances change. The site is easy to use and nurturing. It includes interactive practical and financial charts, and videos for people who learn visually.
NEW YORK, NY: The good news with so many continued advances in medicine is that many illnesses once considered terminal are no longer terminal. The bad news is that the world after diagnosis is not the same as the world before diagnosis. There's a new normal for which no one is prepared.
A dedicated activist, schooled at Harvard and Wharton in law and insurance, with over 20 years experience working with people with life changing conditions, has launched a site to provide people living after a diagnosis of HIV, cancer and other life-changing conditions with all the practical information needed for the new normal inherent in extended life after a diagnosis.
Initial funding was provided by Johns Hopkins, the City of New York and private donors.
According to published reports, over 30,000 sites provide medical information. Until now, Americans surviving a life changing diagnosis were each left to reinvent the wheel, with all the time and stress wasting mistakes, trials and errors because no place filled a gaping hole in the system by integrating pragmatic, legal and financial information, much less on a personalized basis.
David S. 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 (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 grass roots organization which conducted medical research about HIV/AIDS.
After his life partner died of HIV complications, the desire to help keep people from constantly reinventing the wheel with all the blind alleys and stress involved, led Mr. Landay to write 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).
Subsequent seminars at institutions such as Memorial Sloan Kettering, Gilda's Club and Johns Hopkins etc., convinced Mr. Landay that the need was to provide information 24/7 on an individualized basis. It was the seed for the creation of SurvivorshipAtoZ.org
The site covers expected subjects such as how to purchase health insurance in spite of a diagnosis (including a unique interactive chart comparing policies from the point of view of a person with cancer or other life changing condition), how to maximize use of each different type of health insurance policy, and how to change an insurance company's "no" to a "yes". 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.
Survivorship A to Z.org includes practical information pertinent to people with a diagnosis such as:
The site also includes unbiased information about subjects that may not be thought of as relevant to people living long term after a diagnosis until you recognize that the condition may impact the ability to earn money which means it's even more important to avoid unsustainable financial losses. For example, the site includes unbiased information about:
At launch, the site includes specific information useful to people with cancer and/or HIV, as well as information useful with respect to any life changing condition.
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.
As funding permits, the site will expand to add:
To see the major features of the site in action:
Step 1. Enter the site through: SurvivorshipAtoZ.org
Step 2. Look at a sample of each of the methods of finding information.
- Our seven categories (Insurance, Employment Issues etc) provide broad overviews. Categories are divided into topics which are in turn split into articles. Categories are listed on the left side of the page.
- Topics are listed in the pull-down menu in the top right hand side of the page.
- Articles are accessible from topics.
- All content is accessible through the Site Index (located on the left side of the page) and through the alphabetical search.
Step 3. Look at an Individual Action Plan which provides a how-to guide individualized to each user. The Plan is formatted so people can decide which category of information to read in their preferred order. Information starts in bullet point form to give people an overview. Clicks allow the user to go deeper and deeper according to what each user wants to know at any given moment. Plans will continue to get more specific.
You can either see a "sample" plan or create your own.
Step 4. Note the various features available on a person's home page, including interactive charts. For example, the Symptoms chart helps people keep track of their symptoms. When preparing to see a doctor, the user can print a chart in easy-for-the-doctor-to-understand graph format. The List of Instructions helps people keep their lives functioning despite illness. Particularly useful for people who work for large corporations or the government, the Health Plan Evaluator helps people choose the best health insurance plan based on their illness and situation.
The financial charts help a person maximize financial resources.
A list of all our current charts is available at: www.survivorshipatoz.org/chartlist.php
A check mark appears next to charts which have been worked on. The other charts are listed to encourage people to use them.
An individual home page also includes room for general notes as well as notes a user can make about articles of interest (just as you would make notes in the margin of a book).
Step 5. Check out one or more of the videos about talking with a doctor. You can get to the videos from the box on the top right hand part of the home page.
Step 6. Note the subjects included on our message boards, including unique ones for business owners and self-employed people. You will find the message boards via the left side of a page where it says "Message Boards."