Wednesday, February 01, 2006

Please Sign Here

Several years ago, my sister Sharyl and her husband Jason lost their 6 week old daughter, Caylin, to Epidermolysis Bullosa(EB). Since then they have hosted a golf tournament to raise money for organizations searching for a cure for this disease.

Because EB is so rare, most doctors have no knowledge of the disease and many health care facilities are unaware of how to properly treat people with EB. In addition, very few insurance companies pay for the supplies necessary to ensure proper wound care. Currently, a bill is being presented to Congress that would mandate insurance companies to provide coverage on all bandage and wound related products needed by those that suffer from EB. Below is a petition created by the Epidermolysis Bullosa Action Network(EBAN) asking congress to support this bill.

Please consider signing it.

Please Help the EB Children and all EB patients of any age! Sign the Wound Care Petition TODAY!

It is medically necessary for people with many forms of Epidermolysis Bullosa to bandage wounds and protect healthy skin from harm. Most of the time, these expenditures are not covered by insurance of any kind, and the outlay for one household can range from $1-5,000 a month just for wound care supplies! Families are in need of serious financial help now to cover the expense of costly bandages and medical supplies.

Every American should be able to participate in impartial health care coverage, regardless of their disease. The public and our legislators must understand the impact of this disease on EB patients and their families, and the inequity that subsists in today’s health care system.

Petition: Please sign and join us in our effort to invite Congress to support our Wound Care Bill which could mandate insurance companies to provide coverage on all bandage and wound related products needed by those that suffer from Epidermolysis Bullosa. Voice your support now with your signature! Please add your name to the list to help get this legislation passed!

You may access the petition 2 ways:
1. Directly through the Gopetition link at: http://www.gopetition.com/region/238/7998.html

2. At our website! At our website there are also instructions on how to sign our petition if you do not have Internet access and/or an email address:http://www.ebanusa.org/petition.htm

With everyone's help the Wound Care Bill will become a reality.

1 comment:

mabel said...

Wow, I had no idea. How awful, I am so sorry for your and your sister's loss. I cannot even fathom how horrible that must have been.