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HELP US MAKE A REAL POSITIVE CHANGE FOR EB FAMILIES!

STEP 1 : SIGN THE PETITION

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 up to 5,000 a month just for wound care supplies!

There are families with children who need financial help now to cover the expense of costly bandages and medical supplies, and young adults who need this assistance in order to achieve an independent lifestyle.

Every American should be able to participate in impartial health care coverage, regardless of their disease. It is vital for financial assistance to become accessible to all persons in every state. 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.

Once we have enough signatures to show the public's support, we'll be able to take the appropriate steps in making this dream a reality, with our ultimate goal to present the Wound Care Bill to Congress and assure its passing. With everyone's help and positive thinking, we can accomplish this!

Voice your support now with your signature! Please add your name to the list to help get this legislation passed! We need as many signatures as possible to make this happen for EB patients and their families! Please send the link to this petition to anyone you know!

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.

Sign the petition

You will need a valid email address to be able to sign the online petition. If you do not have an email address or if you want to collect signatures in support of this cause from people that do not have Internet access, you may still be able to support our cause. 

Please mail your name or a list of names that must include:

• First and Last Name

• Street Address is optional

• City, State and Zip

• Your Signature or Signatures of each individuals-one person's information per line

Please contact Silvia for the address you need to mail this to. THANK YOU!

You may download THIS FORM (A MS Word Document) if you like. To save this form, you can either click on it and it will open up automatically on your MS Word and you can SAVE it to your computer once it loads, OR, you can RIGHT CLICK on the link above and choose 'SAVE TARGET AS' and save it on your computer. You can then print it.

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  STEP 2 : WRITE TO YOUR LEGISLATOR!!

We need help in getting sponsors and support for this Bill! If you would like to help us, please write to your legislator.

You may find your representative here:
http://www.house.gov/writerep/

You may find your senator here:
http://www.senate.gov/general/contact_information/senators_cfm.cfm

You may find your governor here:
http://www.usa.gov/Contact/Governors.shtml

Here is a SAMPLE LETTER you can use to write and here's a copy of the WOUND CARE BILL you may send along with it.

THANK YOU SO MUCH!

1. What is the Wound Care Bill?
Answer: The Wound Care Bill was originally written by the AAD (American Academy of Dermatology) by Paul Bonta with Sheryl Hayden, Miriam Fedner and Marybeth Sheridan in the late 1990s. It basically forces the insurance companies to pay for the wound care supplies so desperately needed by EB patients which are not covered by HMOs because supplies of this kind are deemed 'Over the counter' products. EB patients need thousands of dollars worth of these supplies for their entire lifespan and it devastates families financially. 
The Bill was deemed too daunting of a task to pass so it was left to gather dust until Marybeth decided it was time to make a go of it in 2005 and started EBAN, with the intent of alleviate the financial devastation of the disease.

2. Is it in Congress yet? If not, when?
Answer: Bills that are presented to Congress without proper backing and support are immediately rejected, so we need to make sure every piece of the puzzle is in place and finally make a grand stand when we do present it to Congress to make sure it passes. Some of these steps include the petition, getting many, many sponsors in every state and such. We might decide to approach this at the state level instead of the Federal level if it becomes apparent that doing it at the Federal level it's an impossibility. We are open to every option to help the families. If we end up doing it state by state, then we will. 
At this point we are not sure 'when' because there are too many variables in place and too many things out of our control. Since this Bill requires officials to want insurance companies to do something, it's not going to be as easy as, say, passing an Awareness Week, which does not cost a dime to anyone. Any way you see it, this is not going to be a quick process.

3. Won't President Bush Veto such a Bill?
Answer: Getting a Bill into Congress, considering we need to get all the backing we need for it, is a long-drawn out task that takes many months, even years. Click Here for all the steps involved. It is unlikely that Bush would still be our president when and if the Senate and the House approves it and appears on the President's desk. For all intense and purpose, President Bush has absolutely nothing to do with the Bill, he will never see it. If we decide to get the Bill approved on a State-By-State basis, then for sure whoever our President will be at that time, he or she will not be involved in it at all. While it's true that the Bill will most likely not be Vetoed if our President is a Democrat, many registered Republicans have pledged their support to this Bill, so there is no definitive answer yes or no. Thinking Positive is what we ask of all our families.

4. Why should any body but the people with EB and the family members of the person with EB pay for their medical supplies?
Answer: With this line of thinking, then Diabetes patients should pay for their own supplies, right? What about cancer patients? They should pay for their own chemotherapy treatments. Pregnant moms? They should pay for their own delivery.
The reason we purchase an Insurance Plan is so our Health Care Bills are taken care of. Families with an EB patient only have ONE treatment for their condition: cover the chronic wounds with ointments and bandages. Unfortunately these supplies are outrageously expensive, and some families pay as much as $5000 a month for these products. Which family can afford this? Many families are forced to skimp on their supplies, some have to lie about their income so they can apply for social programs. No family can afford such a bill unless they are independently wealthy. Click Here to read some testimonials on how families cope. 

5. What kind of supplies are needed by EB patients?
Answer: Most patients need at least some Vaseline Gauze, antibiotic ointments or some kind of ointment of their choosing depending on need, and gauze to wrap the wound. However, most of the patients with severe forms of EB need a lot more than that, and many also bandage to protect healthy skin from getting wounds. Patients with the Recessive Dystrophic form, for example, have wounds that compare to 2nd-degree burn like wounds, so they are in need of advanced wound care supplies, such as the Molnlycke products which tend to be quite expensive (CLICK HERE for a wound care shop listing of these products and their prices) and many other things, such as Wound Dressings, Dressing Covers, Gauze & Wound Cleansers. 

6. What can be done to fight insurance carriers under existing plans until legislation is changed?
Answer: We have provided some info on this website on how to appeal the denials of the insurance company (click here), however, we must warn you that nobody can force Insurance companies to pay for something the existing plans does not cover. Only legislation can do that. Most families that appealed the denials from the insurance companies, who found and took the time to complain to the Health Care Dept. or the HMO Help Center in their states only came out empty handed. There have been families who appealed to the compassion of Insurance companies by sending pictures of wounds and such to no avail. We encourage families to fight, to appeal their denials and to send pictures, as a few of them have been successful, but the percentage is very low. 

These are only a few of the positive feedback we received by those that signed our petition. Thank you for  your support! 

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I can't begin to fathom what it would be like to live like this myself, let alone to have to watch and care for my own child with such a horrific disease! Then, not to have the necessary items to render this care, because of financial disability .... I once hear that you can tell the greatness of a country by the way it treats it's weak (ill), it's young, and it's elderly! What does it say about US if a child already suffering, can't even afford bandages for a small measure of comfort? 
Dee, Michigan

As a mother of a child with EB, I know how mentally, physically, and financially draining the disease can be. The first two nothing can be done about but the latter should not be an issue. Please pass this bill so that all the children and adults suffering with this disease can have one less thing to worry about! Rondi, Pennsylvania

I learned of this for the first time on Access Hollywood and looked it up on the internet, am appalled at the fact that insurance does not cover any expenses for this debilitating disease. I am going to pass this petition on to everyone I know. 
Eleanore, Nevada 

To do nothing is to do harm to these little ones. 
LeeAnn, North Carolina

I just heard about this horrid disease. There is no rational reason on earth that insurance companies cannot cover bandage and would related products. Kids with Epidermolysis Bullosa are so brave. Congress, please put forward this mandate. 
Lisa, Florida

How can you not pay for bandages and wound care? Spend a day with a family who has a child with EB.. you'll want to do anything you can for that child and family.. the suffering is unimaginable for those of us who are outside looking in.. we can't imagine.. and bandages are a necessity.. not a luxury.. the necessity... 
Joseph, Nevada

Wound care supplies are extremely high cost and when no coverage available the consumer ends up getting supplies that are not as effective and can lead to longer healing time. 
Shelley, Michigan

These parents have such a burden and need all the help that is possible! Physical, emotional AND FINANCIAL! Truly--put yourself in their shoes! 
Pam, North Carolina

Orphan diseases like EB need to be recognized and preventative care covered by insurance. 
Margie, Kentucky

I have been diagnosed with Dominant Dystrophic EB. I believe there is a true need for this bill, as we do spend so much money on trying to take care of our sores and dealing with infections from the sores and really not wanting to go to the doctor every week because of the cost of health care, so you try to get creative with the way you tend to the sores yourself. I have two children with EB and couldn't even guess on the amount of money I have spent on bandaging and medicating them. 
Tina, Kansas

My prayers are with you. I just read of a case here in Northwestern Ontario. It's heart wrenching knowing there is no cure. Instead of spending money on war lets spend it on our children who are suffering. 
Rita, Ontario, Canada

I had heard about the butterfly disease and it made me think that there are so many children that need help and there are so many people in the world that need to understand this disease, this includes myself. In fact I am doing a paper for my class about this.
Carrie, Michigan

I never knew about EB, until I saw the pictures of Nicky. I have a son myself and never knew how good we have it. I don't even know what to say. Everyone needs to be aware of EB and we need to do whatever we can to help the people who have it. 
Barry, Colorado

With the lack of a cure for this debilitating disease, wound care is crucial for each patient to enjoy any piece of quality of life that ever other American not afflicted by EB has. Please help our family members that suffer from EB. 
Keith, New Jersey

As a parent with two grown children who suffered from EB I understand the need for this help. When our son was born we had no idea what was to come. At one point we were spending $1,200 a month on bandages. My husband became unemployed and we asked for help with his supplies. This aid was denied! Our state could hospitalize our son but not help us with a few bandages. Thank God for GRANDPARENTS!!! My parents helped us through this crunch and both of my children have done well. Debra, Ohio

Please help make life a little easier for these beautiful children and adults who are already living a difficult life. 
Cally, Texas

I personally have EB simplex. It would mean the world to me and other EB patients/sufferers for this to get passed. Please help. 
Cassidy, Washington

I have two young children who suffer from EB who could really use the help and support of insurance companies with coverage of their supplies they need to be comfortable. 
Alison, Rhode Island

Insurance covers Viagra but not Bandages for Wound Care? We need to get our priorities straight.  Pass this Bill.
Jodi, New Jersey

Insurance covers Viagra but not Bandages for Wound Care? We need to get our priorities straight.  Pass this Bill.
Jodi, New Jersey

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