Urgent: Attention cf adults and 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

 

[semnle34]

What is the plan of action? Has any started lobbying yet or formed some kind of association to fight on our behalf. I am more than willing to join in the fight along with all my friends and family. I just need to know where to start. Thanks for sharing the information. Its been circulating around but no one seems to know what to do.

 

[atwnsw]

Start with sending an email to the CF Foundation immediately from yourself and anybody you know and take a moment to explain the impact it would have on you and others. That is step 1.

 

[triples15]

Start with sending an email to the CF Foundation immediately from yourself and anybody you know. That is step 1.

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/GetInvolved/Advocate/SSA-Disability-Critera-Comments-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/#!documentDetail;D=SSA-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]

The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500 !

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

 

[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.

 

[semnle34]

It looks like the CF foundation has done a good job being proactive. I went on the website and read the letter that was sent and signed by all the CF centers. Its really out of all of our hands at this point. Lets just hope and pray the individual responsible for passing or declining the proposal will do their homework and listen to the foundation. Good Luck to All :0) Lets keep positive and hope for the best.

 

[Printer]

I am 73 years of age and I have CF. I understand that there are many CF patients who could not survive without SS Disability and thank God that then can benefit from SS and SSI. I had a friend who was seriously wounded in WWII. He got a sizeable benefit check every month. He said "I would gladly refuse my benefits if only the VA would stop sending checks to those who should not be getting them"

There are people, some who are CF patients out here, who get SS Disability and SSI, who go to the gym everyday. They brag about feeding the homeless each day.

I repeat, many people need assistance. At the same time, many cases need to be reviewed, If I was getting SSI, I would welcome a review and I would hope that those who don't need it would be stricken from the rolls.

Bill

 

[SoyaSauce]

I am 73 years of age and I have CF. I understand that there are many CF patients who could not survive without SS Disability and thank God that then can benefit from SS and SSI. I had a friend who was seriously wounded in WWII. He got a sizeable benefit check every month. He said "I would gladly refuse my benefits if only the VA would stop sending checks to those who should not be getting them"

There are people, some who are CF patients out here, who get SS Disability and SSI, who go to the gym everyday. They brag about feeding the homeless each day.

I repeat, many people need assistance. At the same time, many cases need to be reviewed, If I was getting SSI, I would welcome a review and I would hope that those who don't need it would be stricken from the rolls.

Bill

"There are people, some who are CF patients out here, who get SS Disability and SSI, who go to the gym everyday. " Yes there is some Bill, perhaps to KEEP their lungs healthy as possible, to keep out of the hospital, AND to PROLONG their life AND FEEL Better. Sitting in office all day or other type of work and coming back and trying to WORK OUT, is impossible after a 9 to 5 shift, or any shift for that matter. I know, i've done it, i've tried it. When I get sick, the gym is even more important for me to get back on my feet. I or other CFer's for that matter, are not going there for the sake of 'because I can' and " I don't have to work! YA I'm getting SSI/SS! " I going there to help my CF, in fact I consider the gym a VERY important part and IMPERATIVE TREATMENT FOR ANY CFer.

Also, just because a CFer goes to the gym everyday has ZERO indication to how well their lung function is or how well they really are at home.

And I will say this again, - The number of patients with CF are FAR FAR LOWER then the TRUE class that is taking SSI/Disability/Foodstamps, which has given any wellfare program a bad name.

 

[Printer]

Soya:

It is one thing to go to the gym after work, it is another thing to go to the gym when you (editorial you) claim to be too sick to do any kind of work because of "disability".

I say this as someone who played College Varsity Basketball and who worked 5 summers as a lifeguard on an Atlantic Ocean beach working for the Commonwealth of Massachusetts. I will put the number of hours that I spent in the gym and pool against anyone out here. You don't need to lecture me about the benefits of physical exercise. I didn't get to be 73 by laying on the couch.

Even if you do get SS and SSI, why would you be opposed to an annual review in order to continue assistance? Do you consider it to be a lifetime annuity?

Bill

Bill

 

[Printer]

Soya:

I took the time to look up the Social Security Administration's definition of disability, it is as follows:

You cannot do work that you did before.
We (SSA) decide that you cannot adjust to other work because of your medical condition, and
Your disability has lasted or is expected to last for at least one year or to result in death.


I stand by what I have said, If someone can go to the gym everyday, then they can work.

Bill

 

[SoyaSauce]

"Even if you do get SS and SSI, why would you be opposed to an annual review in order to continue assistance? Do you consider it to be a lifetime annuity? "

I never said anything about being opposed to any reviews by the SSA Bill, What I am STRONGLY opposing the SSA to reclassify and change the standards on Cystic Fibrosis that is to narrow, That's the problem. In fact I have had 2 reviews in the past, I and my Doctor was very honest with the SSA on my condition. They thoroughly check you out, they know WHAT and WHO you are if you are applying for disabled. I consider SSA help for as long as I need it,- and THAT'S what the program is for, I do hope it's not a "lifetime annuity" , -but I can't as long as CF continues to rot my lungs and pancreas, and until better treatments come out, til I can better manage my disease with out taking 10 hrs of my day alone.


" It is one thing to go to the gym after work, it is another thing to go to the gym when you (editorial you) claim to be too sick to do any kind of work because of "disability"." -As I stated above, how well you are at home or your true your health is functioning from day to day living, has no judgement when being at the gym for average half- 1 hr session a day, that's FAILed logic Bill. Someone that goes the gym everyday with CF is obviously very dedicated to their health, they may have ivs to do when they get in, 60 pills to take, to eat and recover, physical therapy and antibiotic nebs, keeping up their own home and taking care of family if they have one.

Well done on you and your "College Varsity Basketball and who worked 5 summers," in your younger years, you were blessed with better genes then that of other % 80 of other CFers. When I was 15 up to 17 I was a Scottish highland 3 year in a row DANCE Champion in my own country, basket ball and summers couldn't beat what I did.

 

[SoyaSauce]

Soya:

I took the time to look up the Social Security Administration's definition of disability, it is as follows:

You cannot do work that you did before.
We (SSA) decide that you cannot adjust to other work because of your medical condition, and
Your disability has lasted or is expected to last for at least one year or to result in death.


I stand by what I have said, If someone can go to the gym everyday, then they can work.

Bill

The SSA, interviewed me, interview my doctors, TOOK MONTH'S, reviewing my medical history, MY PAST work history, so obviously their criteria was met,. The SSA knows that my Dr recommends the gym sessions for me as a part of my treatment plan, and they still saw me for my disability.

 

[Printer]

I don't have a problem with someone on disability going to PT nor do I have a problem with that person seeing a Personal Trainer. My problem is with weight lifters, basketball players, etc.

ps My 22nd Great Grandfather was King William I of Scotland (1143-1214).

 

[iefisherman]

I had a port put in in November. Two weeks later I get a blood clot from it. I was put on blood thinners with restrictions to stay away from sharp objects and fall hazzards. My work said there was no job in the entire plant that i could do and they asked me to get my restrictions changed (i have a recording of that). I have 6 months of short term dissability which will be up next month. My vascular surgeon wont change my restrictions. After talking with my cf doctor I decided to look into ssi dissability. I went through the cf legal assistance, and they wouldn't take my case because of non-compliance with my medication. I was working 12 hour days 6-7 days a week and didnt have time to fit in two hours of treatment. My girlfriend works there also and the supervisor said they are going to let me go at the end of next month. 11 years in the printing industry and a good salary are going to be washed down the drain because I worked hard all of my life. my FEV1 in in the mid 30's. I throw up every day. I have many other issues health wise. Losing my job, insurance, and have needed to barrow money to pay bills (short term pays me$325 every two weeks) I have a mortgage, need to heat my home, need to buy food. Now what do I do?

 

[triples15]

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.

Just got this email from the Cystic Fibrosis Foundation:


Dear Autumn,

Social Security disability benefits help many people with cystic fibrosis access the health care they need and pay for life's essentials. The people who rely on these benefits are no longer able to work and truly have no other options— they can’t afford to lose this lifeline.

The Social Security Administration recently proposed changes that could make it more difficult for people with CF to receive these critical benefits— changes that go against the advice of the doctors who understand and treat CF. Ask your representative to join our effort to fix this proposed policy:

Help prevent changes that could limit access to disability benefits for people with CF

Here's a little background: the CF Foundation has been working with our champions in Congress on a letter to the Social Security Administration that lays out our concerns about these proposed eligibility changes. We want our message to be heard loud and clear, so we need as many representatives as possible to sign on to the letter.

Your representative will be more likely to sign the letter if you, your family and your friends just ask. We've drafted a note for you, so all you have to do is hit send.
Please don't forget that these eligibility changes are proposed— not final— and your advocacy efforts may help prevent them from taking effect.
Thank you for all you do! Together, we will keep adding tomorrows for all people with CF.

Sincerely,
Cystic Fibrosis Foundation
publicpolicy@cff.org

 

[SoyaSauce]

I don't have a problem with someone on disability going to PT nor do I have a problem with that person seeing a Personal Trainer. My problem is with weight lifters, basketball players, etc.

ps My 22nd Great Grandfather was King William I of Scotland (1143-1214).

Hehe, well, we've got something in common - Oh and ya can-ne beat a Scot -Printer, Especially one with CF,

 

[SoyaSauce]

Just got this email from the Cystic Fibrosis Foundation:


Dear Autumn,

Social Security disability benefits help many people with cystic fibrosis access the health care they need and pay for life's essentials. The people who rely on these benefits are no longer able to work and truly have no other options— they can’t afford to lose this lifeline.

The Social Security Administration recently proposed changes that could make it more difficult for people with CF to receive these critical benefits— changes that go against the advice of the doctors who understand and treat CF. Ask your representative to join our effort to fix this proposed policy:

Help prevent changes that could limit access to disability benefits for people with CF

Here's a little background: the CF Foundation has been working with our champions in Congress on a letter to the Social Security Administration that lays out our concerns about these proposed eligibility changes. We want our message to be heard loud and clear, so we need as many representatives as possible to sign on to the letter.

Your representative will be more likely to sign the letter if you, your family and your friends just ask. We've drafted a note for you, so all you have to do is hit send.
Please don't forget that these eligibility changes are proposed— not final— and your advocacy efforts may help prevent them from taking effect.
Thank you for all you do! Together, we will keep adding tomorrows for all people with CF.

Sincerely,
Cystic Fibrosis Foundation
publicpolicy@cff.org

Everyone needs to send these, I have sent mine in, EVERYONE- Send yours in as well !

I haven't heard anything, received anything or if anything has been decided or changes, We need to PRAY (VEST)

 

[triples15]

Everyone needs to send these, I have sent mine in, EVERYONE- Send yours in as well !

I haven't heard anything, received anything or if anything has been decided or changes, We need to PRAY (VEST)

I sent mine also. These changes will not only effect those who receive SSDI now, they will effect MANY CFers who need it in the future. These changes will be on the books for many years if passed.

If anyone is interested in this letter to their representative go to CFF's site and they automatically send it for you. It's super quick and easy. The letter reads as follows:

As a constituent and someone personally affected by cystic fibrosis (CF), I urge you to sign on to a letter to the Social Security Administration being circulated by Congressman Ed Markey (D-MA) and Congressman Tom Marino (R-PA) that expresses concern with the proposed rule, "Revised Medical Criteria for Evaluating Respiratory System Disorders". The deadline to sign on is Friday, April 26.

The "Revised Medical Criteria for Evaluating Respiratory System Disorders" proposal changes the medical criteria that the Social Security Administration uses to determine whether someone with cystic fibrosis is eligible for disability benefits, and physicians who specialize in CF say that these revisions do not accurately measure whether a person with cystic fibrosis is disabled. If left unchanged, the proposed rule could unfairly bar people with CF who cannot work from accessing these critical resources.

The most troubling provision of the proposed rule states that in the event of a serious complication, a CF patient would have to be hospitalized in order to show that they are becoming progressively sicker to the point of disability. However, doctors now have the ability to treat some very serious complications on an outpatient basis, and many doctors prefer this alternative due to the risk of hospital-acquired infection and the cost of hospital care. Requiring hospitalization goes against accepted medical practice and could impact CF patients' eligibility for benefits.

Cystic fibrosis is a life-threatening genetic disease that affects 30,000 children and adults in the United States. Cystic fibrosis is primarily a lung disease caused by a defective gene that makes the body produce thick, sticky mucus that clogs the lungs and leads to dangerous infections. This mucus also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. The predicted median age of survival for a person with CF is in the late-30s.

Once again, please sign on to Representatives Markey and Marino's letter to the Social Security Administration (SSA) which expresses concern with the proposed "Revised Medical Criteria for Evaluating Respiratory System Disorders" rule and urges SSA to revise this proposal. The deadline to sign on is Friday, April 26.

Basically you just fill out your name and address and they forward it on to your representative for you. Here is the link:

http://hq-nu.salsalabs.com/o/50674/p/dia/action3/common/public/index.sjs?action_KEY=7993

Take Care,

Autumn

 

[tarheel]

I stand by what I have said, If someone can go to the gym everyday, then they can work.

Bill

I go to the gym every day I'm not in the hospital, and when I'm in the hospital I make them bring me a stationary bike so I can work out in my room. I have 20% lung function and I'm often dependent on my mom for daily assistance with things like laundry and grocery shopping.

I go to the gym, lugging an oxygen tank, and endure the stares, the gawks, the whispers between workout buddies- the shame of being 20, "looking healthy" and being oxygen dependent- because it is the only thing that is keeping me alive at this point.

I go to the gym, even when my port is accessed and I'm dosing IV meds, because there isn't much time left in the day otherwise.

I go to the gym because I believe it is the most important thing I can do for my health RIGHT NOW. I don't believe in a cure, I believe in sweat equity.

That being said, I do see CFers taking advantage of SSD every day. It makes me angry beyond words. I try not to associate with them, because they are just like your average 30 year old living in their parent's basement: a drain on society who has no plans to make anything of themselves.
I, on the other hand, have had to place my life on hold because my disease is so volatile and debilitating.
But I go to the gym far more now than I ever have before. Going to the gym IS my work. No job has higher stakes (haha, or worse chances of career progression) than this.
Perhaps your statement is not iron-clad.
I'm asking we all keep an open mind, and be thankful that the health that we do have. Believe you me, you can't fathom single digit lung function until it becomes your own reality.