URGENT: Attention CF FAMILIES

[atwnsw]

WE HAVE AN EMERGENCY​

On February 3, 2013, the Social Security Administration (SSA) proposed changes to medical eligibility criteria which, if enacted as is, would result in thousands of people with Cystic Fibrosis losing their Social Security Disability Insurance, SSI, Medicare and Medicaid.

Every day Cystic Fibrosis adults fight to maintain our health and now we need your help to keep Social Security benefits which are critical to our survival. My name is Anthony Weiss and I have Cystic Fibrosis. For many of you that know the story of 65 Roses, it was my brother, Richard, who uttered the well-known words at the age of 4. For those people with CF, families and friends who are unfamiliar with the story, here is a link to the National Cystic Fibrosis Foundation: 65 Roses Story


I already lost my oldest brother, Arthur, to this dreadful disease and last summer I almost lost my brother, Richard. On the advice of my doctors I stopped working approximately 4 years ago (after a 15- year career) to maintain my health and under these proposed revisions I along with thousands of others would lose my Social Security benefits and Medicare.

Many CF children and adults who already receive disability benefits could be disqualified. Without income and health insurance disabled CF adults would be forced back to work.

Here are some examples of the changes proposed (See attached document for comparison):


· Home IV antibiotics or inhaled antibiotics like TOBI or Cayston will not be a factor for eligibility.

· Visits to your CF Center for exacerbations will no longer be considered as a factor for eligibility. Patients will need 3 hospitalizations within a year to qualify for benefits.
· Social Security lowered the FEV1 % criteria to qualify for disability benefits.

Through generous donations and hard work the Cystic Fibrosis Foundation has made great strides in improving the average life expectancy. If the proposed changes are implemented, the impact will be devastating for thousands of children and adults with CF. Without Social Security benefits, Medicare and Medicaid many children and adults will suffer.


Please email the Cystic Fibrosis Foundation (Info@cff.org) to the attention Dr. Bob Beall and explain the impact these changes would have on your life. If you are a friend or family member, also please take the time to write the CF Foundation and express your concern. The Cystic Fibrosis Foundation needs to hear from all of us and our voices must be heard. This urgent issue must be their #1 priority.

Sincerely,

Anthony Weiss

 

[triples15]

The Cystic Fibrosis Foundation is aware of the proposed changes and expressed their concerns/objections via letter to the SSA regulations department. The letter can be read here:

http://www.cff.org/UploadedFiles/Get...ments-4-13.pdf

Unfortunately the comments period ended April 5th and they will not receive any further public comment on the matter. The CFF's letter, as well as a letter signed by 100 cystic fibrosis specialists were submitted by the deadline. It is my impression that the foundation also orchestrated this letter from the physicians. There are also many comments by individuals with CF, stating how this will effect them. All comments, including the the letter from the doctors, the CF foundation, and individuals can be read at:

http://www.regulations.gov/#!documen...2006-0149-0024

I'm all for lobbying to stop these changes, but not sure if bombarding the Cystic Fibrosis Foundation is the right way to go. They have already stepped up in the fight against it. Not sure there is a ton more they can do at this point? Maybe letters to our congresspersons? I'm not sure?

Autumn 32 w/CF

 

[SoyaSauce]

[h=3]Call the President[/h] [h=4]Phone Numbers[/h] Comments: 202-456-1111
Switchboard: 202-456-1414


The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

 

[atwnsw]

The CF Foundation has always been great at keeping the CF community informed. At present there is a lot of misinformation spreading about the impact this will have on CF adults, children and families. There are a lot of scared CF patients including myself who want to mobilize and direct our efforts at stopping these revisions. The purpose in writing the CF Foundation directly is:

1) They need to know the direct impact of losing your disability benefits would have on you and your family.
2) Ask them to share their strategy on how to stop these proposed SSA changes.
3) Tell us how we can help.

We need a coordinated approach from the CF Foundation.