can mean so much to an average family--an average Lynch syndrome family, that is.
At last! A government program which significantly benefits the families of those with the Lynch syndrome.
As most of us know, the United States Government insurances seldom pays for genetic testing for Lynch syndrome for those who have not been affected by a cancer. These insurances include Medicare, Medicaid, V.A., Tricare and other insurances who rely upon their standards for guidelines and underwriting. (Shhh, secret stuff---the trick to obtaining genetic testing under Tricare is to seek the genetic care on an actual U.S. military installation, rather than an outside Tricare provider. ) This is something we have been working on and will take a LOT more work…however…the good news! They are doing something else…with the creation of "The Blue Button"!
The Blue Button is a program which allows individuals to download their health records, online, to their own personal computers. This not only allows more personal control over health records and their own health but does something more…
Remember how genetic counselors are always talking about how family communication is a problem within Lynch syndrome families which needs to be improved? Simply having access to immediate possession of your medical records and the ability to send that important genetic test result or the personalized managed screening test protocol to your loved ones, is invaluable. It can save time and delay, not to mention save lives and eliminate frustation when dealing with the GC who is adamant in seeing the actual medical records of family members before considering prescribing genetic testing! (Something else needed to be resolved in attempting to receive immediate lifesaving tests and treatments when ill.)
There is nothing more difficult for someone who is undergoing a cancer and awaiting treatment, than to have to stand in lines to request information, pay $1 per page for photocopies, wait weeks for arrival for records or be forced to call emotional family members and beg for information and wait for them to be able receive their medical documentation in order to save one’s life. In fact, it is almost impossible to do when many don’t even know how they will find the strength to even get up and answer the front door for the grocery delivery person.
The “blue button” makes it easier on everyone and saves time, costs, money AND trees! Encourage your GC to speak to their local hospital administrator, as well as to your doctor, and request their institution or facility develop a program so you can get acess to your medical records using the blue button technology! Its a great resolution to immediate access to medical records.
This program is a great start for everyone to work on, with their own personal medical providers and health systems, while we continue to work on the bigger issues with government of the access and provision of lifesaving genettic testing and management screening tests for all!
For more information on the Blue Button, go to: http://bluebuttondata.org/about.php