Revision of Soc Security for those of us with Respiratory Disease

[DebraHow]

I just rejoined back here at cf.com and if I'm not supposed to post this, Ennio, just remove it and send me a message.

It just became public knowledge 48 hrs ago that Obamacare has a revision underway to change the qualification for Medical Disability for Respiratory Illness. I can't remember how it was worded, but it was something to that extent. We only have TODAY to act and appeal.
[h=5]
Please take the time to comment here. Even if you don't have cf. We need to stress that CF is such a time consuming disease and there is no way to work and take care of ourselves properly. I am a living breathing example of how me not working in a full time capacity allows me to care for myself. "To submit comment via internet: We strongly recommend that you submit your comments via the Internet. Please visit the Federal eRulemaking portal at http://www.regulations.gov/. Use the Search function to find docket number SSA-2006-0149. The system will issue you a tracking number to confirm your submission. You will not be able to view your comment immediately because we must post each comment manually. It may take up to a week for your comment to be viewable."[/h]
I only have 1 antibiotic left that I'm not allergic to, that works with my PA. It didn't help, so after two weeks on it I had to be placed in ICU and desensitized to one that works that I'm allergic to. My lung function is around 30% right now and I have to be VERY careful in public not to be near someone sick. If I had to work outside the home I believe it would just finish me off. Not to mention all of the time our health maintenance takes and the time we're on IV's.

PLEASE take the time to go to the side listed today and fill out the form and appeal a change!

 

[regina65]

I just rejoined back here at cf.com and if I'm not supposed to post this, Ennio, just remove it and send me a message.

It just became public knowledge 48 hrs ago that Obamacare has a revision underway to change the qualification for Medical Disability for Respiratory Illness. I can't remember how it was worded, but it was something to that extent. We only have TODAY to act and appeal.

Please take the time to comment here. Even if you don't have cf. We need to stress that CF is such a time consuming disease and there is no way to work and take care of ourselves properly. I am a living breathing example of how me not working in a full time capacity allows me to care for myself. "To submit comment via internet: We strongly recommend that you submit your comments via the Internet. Please visit the Federal eRulemaking portal at http://www.regulations.gov/. Use the Search function to find docket number SSA-2006-0149. The system will issue you a tracking number to confirm your submission. You will not be able to view your comment immediately because we must post each comment manually. It may take up to a week for your comment to be viewable."


I only have 1 antibiotic left that I'm not allergic to, that works with my PA. It didn't help, so after two weeks on it I had to be placed in ICU and desensitized to one that works that I'm allergic to. My lung function is around 30% right now and I have to be VERY careful in public not to be near someone sick. If I had to work outside the home I believe it would just finish me off. Not to mention all of the time our health maintenance takes and the time we're on IV's.

PLEASE take the time to go to the side listed today and fill out the form and appeal a change!

I am the same way especially in flu season. My fev 1 is 40 . I have cepacia and mrsa. The last IV round 2 months ago I still have not recovered from. The only 2 meds that worked on the cepcacia I now cannot take. The meropenem gave me chills and fever and red stinging skin. The ceftaz caused my lungs to swell (inflammation). Thats what I havent recovered from. They have never mentioned desensitixing. I did leave a comment on the proposal

 

[GabiO]

All changes regarding CF are described in section 3.04, which I am copying and pasting below. Or you can read it at: http://www.regulations.gov/#!documentDetail;D=SSA-2006-0149-0024 Which change alarms you and you would like to object to? "We propose to make the following changes to current 3.04:

• Add categories for age and gender to the spirometry tables and modify the
  values in proposed 3.04A (FEV [SUB]1[/SUB]) to recognize the differences in
  predicted normal values between females and males.
• Provide separate tables for people age 18 to the attainment of age 20
  (proposed table VII-A) and age 20 and older (proposed table VII-B) under
  proposed 3.04A to account for the continuing physical maturation process for
  such young adults.
• Require a less severe ventilatory defect for listing-level impairment in
  proposed 3.04A in recognition of the fact that people with CF are disabled at a
  comparatively higher level of lung function than others who do not have CF.
• Add criteria for evaluating a chronic impairment of gas exchange to include
  ABG test values for the evaluation of CF (proposed 3.04B).
• Replace current 3.04B (for episodes of bronchitis, pneumonia, hemoptysis, or
  respiratory failure) and current 3.04C (for persistent pulmonary infection) with
  proposed 3.04C, for exacerbations and complications of CF, and revise the
  criteria for how we consider hospitalizations under this proposed listing. We do
  not specify a minimum length of hospitalization because hospitalizations for
  exacerbations and complications of CF are invariably long enough for purposes of
  our listings. For complications of bronchitis, pneumonia, or hemoptysis (more
  than blood-streaked sputum), in people with CF, we would no longer consider
  physician interventions, either as an outpatient or in an emergency department.
  When these types of complications in CF occur, they are too severe to treat on
  an outpatient basis. We consider this level of severity more reflective of a
  listing-level impairment.
• Provide an expanded list of acute and chronic CF complications that, when in
  specified combinations, reflect a listing-level impairment under proposed 3.04D.
  We would add the following criteria for acute CF complications: Spontaneous
  pneumothorax requiring chest tube treatment (proposed 3.04D1), respiratory
  failure requiring continuous assisted ventilation (proposed 3.04D2), and
  pulmonary hemorrhage requiring vascular embolization (proposed 3.04D3). We would
  also add the following criteria for chronic CF complications: Hypoxemia
  (proposed 3.04D4), weight loss accompanied by certain other requirements for a
  specified period (proposed 3.04D5), and CF-related diabetes (CFRD, proposed
  3.04D6). We may also evaluate any of these complications under proposed 3.04C if
  they result in hospitalization.

 

[DebraHow]

They will no longer consider physician interventions that are outpatient or ER visits. They will no longer count for the 6 treatments that qualified in a year previously. I'm just hoping that I will still qualify because there is no way that I can work.

 

[triples15]

I think the problem, the way I understand it, is that they will no longer count home IVs as an intervention. They are saying that if it can be treated at home, it is not severe enough to count. This, IMO, is flawed logic. Many CFers do home IVs whenever possible to avoid the germs of the hospital, to get better rest etc. It does not mean they are less sick than someone else who would be treated inpatient for a similar exacerbation. I recently did home IVs after a virus kicked off a nasty exacerbation where I lost 20% lung function. We chose home IVs in order to not expose me to other viral illnesses that were rampant at the time. So, in Social Security's eyes under this new impairment listing, that 4 weeks of IV antibiotics and 20% loss of lung function would not have been considered an intervention because I was not hospitalized. Yikes.

Also, I didn't see it specifically mentioned, but I'm assuming then that they are no longer considering the need for nebulized antibiotics as an intervention.

If I'm reading these changes correctly it will hurt many CFers that are currently on, or going to apply for SSDI. Someone please correct me if I'm wrong!

Autumn 32 w/CF

 

[DebraHow]

I think you are right, Autumn. I'm on week 5 of home IVs after a short ICU stay to desensitize. I think I've been just as sick as many who are hospitalized.

I was told by other CFers on FB that nebulized meds no longer will count, as well as ER trips, which is just nuts.

this is very scary. Everyone needs to go to that link and speak up before midnight! I don't know what I'll do if I lose my disability.

 

[triples15]

I agree Debra, it is scary. I was approved for SSDI 4 years ago and actually am currently under a review. I am beyond nervous and thinking about what we will do financially if I lose it. Under the guidelines they are looking to change to I would definitely not qualify at this point. Ugh.

 

[azdesertrat]

I wonder how this will affect those of us who have had a transplant & are unable to work. VIVA OBAMACARE!

 

[DebraHow]

I've wondered that, too, Pat. I'll be 53 next month & never had one. My fev1 is around 30% right now.

 

[triples15]

I've wondered that, too, Pat. I'll be 53 next month & never had one. My fev1 is around 30% right now.

Debra,

It appears for now you can relax. With your FEV1 being around 30% you meet the current impairment listing on that alone (3.04 A). You would not need to worry about the hospitalization aspect at all. You only need to meet either A, B, or C. You would clearly meet A. Also, with these proposed changes, it looks as if they are actually going to RAISE the qualifying FEV1. Meaning one will be able to get approved with a higher FEV1 than what the current impairment listing is. So that change is actually a positive for CFers.

The people this will hit hard are people such as myself with "decent" FEV1s but were approved mostly based on IV and nebulized antibiotic use. Actually, the year I was approved I did have 3 hospitalizations in a 12 month period so that would still fit the new criteria. However, currently I have not been hospitalized in the last 12 months, so if they used these new standards with my review I would be kicked off. I would need them to continue to look at home IV and nebulized antibiotic use. Ugh.

So Debra don't let yourself stress over this! You have a pretty clear cut case for approval based on your lung function. As far as post-transplant goes, I didn't see that they are changing anything for that impairment listing. But I may have missed it.

For anyone interested, here is the current impairment listing for cystic fibrosis:

3.04 Cystic fibrosis. With:
​

A. An FEV[SUB]1[/SUB] equal to or less than the appropriate value specified in table IV corresponding to the individual's height without shoes. (In cases of marked spinal deformity, see. 3.00E.);
​

or​

B. Episodes of bronchitis or pneumonia or hemoptysis (more than bloodstreaked sputum) or respiratory failure (documented according to 3.00C, requiring physician intervention, occurring at least once every 2 months or at least six times a year. Each inpatient hospitalization for longer than 24 hours for treatment counts as two episodes, and an evaluation period of at least 12 consecutive months must be used to determine the frequency of episodes;​

or​

C. Persistent pulmonary infection accompanied by superimposed, recurrent, symptomatic episodes of increased bacterial infection occurring at least once every 6 months and requiring intravenous or nebulization antimicrobial therapy.​

Table IV​

(Applicable only for evaluation under
3.04A - cystic fibrosis)​

Height without Shoes (centimeters)	Height without Shoes (inches)	FEV[SUB]1[/SUB] Equal to or less than (L,BTPS)
154 or less​	60 or less​	1.45​
155-159​	61-62​	1.55​
160-164​	63-64​	1.65​
165-169​	65-66​	1.75​
170-174​	67-68​	1.85 ​
175-179​	69-70​	1.95​
180 or more​	71 or more​	2.05​

 

[RytheStunner]

This has nothing to do with Obamacare.

 

[triples15]

This has nothing to do with Obamacare.

This.

These changes have been in the works long before Obama took office. They sent out an Advance Notice of Proposed Rulemaking (ANPRM) in 2005 in regards to changes to the respiratory impairment listing. As far as I can tell they have absolutely nothing to do with Obama or Obamacare:

[h=3]Why are we proposing these revisions and on what information are they based?[/h]We are proposing these revisions to reflect our program experience and medical advances in evaluating respiratory disorders. We last published final rules making comprehensive revisions to section 3.00—the respiratory system listings for adults (people who are at least 18 years old)—and section 103.00—the respiratory system listings for children (people under age 18)—on October 7, 1993. [SUP] (1) [/SUP] In the preamble to those rules, we indicated that we would periodically review and update the listings in light of medical advances and our program experience. Since that time, however, we have only extended the effective date of the rules. [SUP] (2) [/SUP]
In developing these proposed rules, we considered the public comments that we received in response to an ANPRM that we published in theFederal Registeron April 13, 2005. [SUP] (3) [/SUP] In the ANPRM, we announced our plans to update and revise this body system, and we invited interested people and organizations to send us written comments and suggestions. We also received public comments at an outreach policy conference on “Respiratory Disorders in the Disability Programs” that we hosted in Chicago, Illinois, on August 25-26, 2005. [SUP] (4) [/SUP]
In developing these proposed rules, we also used information from a variety of sources, including:

• Medical experts in the field of pulmonology, experts in other related fields, advocacy groups for people with respiratory disorders, and people with respiratory disorders and their families;
• People who make and review disability determinations and decisions for us in State agencies, in our Office of Quality Performance, and in our Office of Disability Adjudication and Review; and
• The published sources we list in the References section at the end of this preamble.

 

[welshwitch]

Sorry, guys. This totally sucks. Man, having CF is tough. Hang in there, everybody

 

[semnle34]

I cannot believe that now after all this time SSA wants to make changes to disability requirements. Why now??? Why hasn't the government looked into or made changes to the welfare and food stamp system? There are people who have been utilizing those services their entire lives and continue to with NO intention of discontinuing. I just for the life of me don't understand why the government wants to make changes to a terminal illness yet mental health and other so called disabilities are never questioned. You can claim depression and receive SSI for life with no questions asked. I'm glad SSA is looking into some of their qualifications for individuals receiving SSI but Cystic Fibrosis isn't one that should be messed with. I worked out in the public arena for 10 years prior to going out on disability and the majority of the people I had dealings with were receiving benefits (food stamps, welfare, housing assistance and healthcare) and were perfectly capable of working. The only disability they truly had was LAZINESS. This absolutely infuriates me. I hope that the CF community up rises against about the above mentioned proposal and strikes it down immediately. I am appalled that the government can pick and choose who lives and who dies. Eliminating a majority of the requirements already accepted by SSA now will put me and many others 6 feet under. Our fate lies in their hands....lets pray that whomever is reviewing this proposal will see the changes are unnecessary.

 

[RytheStunner]

I cannot believe that now after all this time SSA wants to make changes to disability requirements. Why now??? Why hasn't the government looked into or made changes to the welfare and food stamp system? There are people who have been utilizing those services their entire lives and continue to with NO intention of discontinuing. I just for the life of me don't understand why the government wants to make changes to a terminal illness yet mental health and other so called disabilities are never questioned. You can claim depression and receive SSI for life with no questions asked. I'm glad SSA is looking into some of their qualifications for individuals receiving SSI but Cystic Fibrosis isn't one that should be messed with. I worked out in the public arena for 10 years prior to going out on disability and the majority of the people I had dealings with were receiving benefits (food stamps, welfare, housing assistance and healthcare) and were perfectly capable of working. The only disability they truly had was LAZINESS. This absolutely infuriates me. I hope that the CF community up rises against about the above mentioned proposal and strikes it down immediately. I am appalled that the government can pick and choose who lives and who dies. Eliminating a majority of the requirements already accepted by SSA now will put me and many others 6 feet under. Our fate lies in their hands....lets pray that whomever is reviewing this proposal will see the changes are unnecessary.

There has been discussion ongoing for amending the entire system, including SSI and foodstamps. Yes, there are some people who abuse the system in regards to food stamps and SSI. But in my opinion, having CF shouldn't not automatically make you disabled either. There are CFers out there as well who enjoy pretty moderate health and their opinion is "I have CF, there's no way I could ever work." and they don't even try because they have the convenience of getting SSI. That sort of mindset doesn't only apply to poor people, it applies to sick people as well. My FEV1 has been in the 20s for the past eight years and I've either gone to school full-time or worked full-time for all but one year of that time (and that was due to being laid off, not because I told myself I couldn't work). We all know that PFTs aren't the deciding factor on everything, but there are some pretty healthy people out there who tell themselves they can't work even though they've never tried.

 

[semnle34]

RytheStunner,

Believe me I understand what your saying. I have worked for the past 15 years of my life. Ive had a job since I was 15, went to school worked a full time job, went to college got my Bachelors and became a cop for 10 years. Unfortunately pushing myself to act like a "normal" person put me in the hospital 3 times a year plus however many IV's in between. My job wasnt so accomindating for the frequent CF tune-ups nor did they really care. It was your either here or we can find someone else to fill your position kind of mentality. I know some people who've never worked a day in their life and probably could have. I just think the option of going on Disability should be there so CF'ers can focus their daily lives on their medication regiment. Making the restrictions to where your basically on your way out isnt fair. The system was designed to assist people so they can survive and thrive with a dibilitating disease. I just think they should focus on making revisions to other disabilities especially temp one's like back, neck and mental illness related disabilities first before attacking terminal illnesses. Granted with the advancements in our medications we have a greater outlook on surviving much longer than ever expected. Its a miracle how far the research has come. I just feel that its still such a fragile disease to mess with. I admire you for working and continuing school despite your FEV's being in the 20's. You are an inspiration to many CF'ers. I hope that other CF'ers can find it in them to have the same kind of attitude you do and pursue an education and employment without laying down. Keep up the good work :0)

 

[regina65]

When will we know the outcome?

 

[sharongannon123]

This is absolutely ridiculous to get rid of SS benefits for people with CF. Honest to God I do not know of another disease like this that is so high maintenance and how all it takes is a sneeze from another person to throw a person with cf into a tailspin and in the hospital fighting for their lives ! I am so aggravated right now and I voted for Obama. never again. I'm really getting sick of him and his insurance bs. Especially making folks with no insurance and no funds to pay for insurance pay a penalty at time time !! SO STUPID AND RUDE !!! I'm so done with him. Now he's making my only son's life even more difficult with getting rid of dSs for respiratory illness?? Give me a break. THESE PEOPLE CAN'T EVEN BREATHE and you don't think that is "disabling" ???!!! Insane !!! I will be immediately writing my congressmen and women about this. Give me a flipping break !!!

 

[RytheStunner]

This is absolutely ridiculous to get rid of SS benefits for people with CF. Honest to God I do not know of another disease like this that is so high maintenance and how all it takes is a sneeze from another person to throw a person with cf into a tailspin and in the hospital fighting for their lives ! I am so aggravated right now and I voted for Obama. never again. I'm really getting sick of him and his insurance bs. Especially making folks with no insurance and no funds to pay for insurance pay a penalty at time time !! SO STUPID AND RUDE !!! I'm so done with him. Now he's making my only son's life even more difficult with getting rid of dSs for respiratory illness?? Give me a break. THESE PEOPLE CAN'T EVEN BREATHE and you don't think that is "disabling" ???!!! Insane !!! I will be immediately writing my congressmen and women about this. Give me a flipping break !!!

They are NOT getting rid of SS benefits for people with CF, they are just making the qualifying standards more strict. Truth is, a lot of CFers who currently receive them probably shouldn't.

 

[SoyaSauce]

They are NOT getting rid of SS benefits for people with CF, they are just making the qualifying standards more strict. Truth is, a lot of CFers who currently receive them probably shouldn't.

"Truth is, a lot of CFers who currently receive them probably shouldn't" Are you kidding me? How do you know this as the truth? Ever CF case in different

With stacks of ENDLESS PILLS, breathing treatments, IV antibiotics with side effects and trying to cram that in at the same time while trying to WORK a full time is NOT POSSIBLE,- FOR SOME,.

My lung function currently is in the 75 on a good day and for last last few years 80's once I stopped working, they only reason they are '75' now is because I can keep them that way. When I tried to worked full time, trying to do treatments my lung function dropped 40-50's, and I knew I had stop work for my health soon, it just wasn't possible, I would come home EXHAUSTED and not do treatments, and start a vicious cycle over and over, besides that and trying to eat and exercise. WORK was MORE WORK for my CF ! Eventually I think all the stress from work, -I developed permanent diabetes and that was the last straw for me.

I am not sure on your CF treatments regiment and i'm not trying to criticize you in anyway and bless you, but you state your lung function is in the 20's,- to me and to be working seems doesn't seem possible.