Should Cystic Fibrosis be declared a disability?
- Thread starter randford
- Start date
Autumn, I found the Facebook post! I'm a little slow but hey, this is great! ;-) Over a thousand likes, over 200 comments and shares!
https://www.facebook.com/knowcf/posts/10153145784473777
I sent the FB post to CFF and encouraged them to review it and perhaps forward it to Bob Bell. Let's hope! It's a start!
https://www.facebook.com/knowcf/posts/10153145784473777
I sent the FB post to CFF and encouraged them to review it and perhaps forward it to Bob Bell. Let's hope! It's a start!
Wow, Randford, have you checked out the cysticfibrosis.com Facebook post about this thread? People are coming out of the woodwork. There are currently 749 likes, 162 comments, and 204 shares! Maybe you should not be discouraged. People ARE interested in this, and the vast majority are supporting your position.
I especially appreciated this comment:
Mike Amend : "As a Type 1 Diabetic for the past 37 years and the father of an 18 year old CF patient, I am surprised it is not technically a disability already. Diabetes is a disability and I can tell you that CF can be far more debilitating than diabetes. You can thrive with both diseases, but it is impossible to thrive with CF unless you put in hours of daily therapy and submit yourself to weeks of being in the hospital. Do not look at the word, disabled, and believe that it will hold you back. It will not. However, the label will provide much needed protection. There is no question in my mind that CF patients should be covered under a protective status. Not because of what they cannot do, but so that they are enabled to contribute to society AND stay healthy."
Not sure if Mike is a member here, but well said Mike! Amen.
I think you are on the right track Randford, it's just that many people (myself included) need to be told exactly how to help. We need a more concerted approach. Do we say that everyone who thinks this is an issue writes a letter to the CFF? The CFF and their state representatives? The SSA? Maybe a sample letter that people could alter to fit their own personal situation? If we came up with EXACTLY what to do and when to do it to make this an organized effort perhaps more people would participate and gives a better chance for the masses to be heard. What about a national news outlet doing a story about the expense of our meds, the time we spend doing treatments, the time spent on IVs/in the hospital etc. I think the average person knows NOTHING of how expensive it is to have cystic fibrosis. I've honestly had people say things to me like "but you have insurance, right?", insinuating that I can't be paying that much for my care. HA!! If they followed just ONE CF patient around for a few days/weeks I think everyone would be shocked.
Anyway, that's my 2 cents.
Autumn 34 w/CF
No worries. At least folks are discussing the subject! It would be great for CF patients and families to continue the conversation and share with CFF. I encouraged it by offering the link from the Facebook page, as well as the email address to send it. And for those reading this, please send it on!
https://www.facebook.com/knowcf/posts/10153145784473777
Email to: ideas@cff.org
At some point, we should all be simpatico on this subject. Let's hope!!
Randford
https://www.facebook.com/knowcf/posts/10153145784473777
Email to: ideas@cff.org
At some point, we should all be simpatico on this subject. Let's hope!!
Randford
Hi Randford! I'm really glad I could make your day!!
If you go to cysticfibrosis.com's facebook page it is the first post on the page, dated January 28th. It has a link to this thread. There are now over 1K likes, 277 comments, and 288 shares.
I saw you tried to PM me, sorry bout that. I've deleted a bunch of messages and my box is still full. I'm a bit of a hoarder of messages because I like to keep them in case I need to reference them in the future. You can email me at: coudeyrasa@aol.com.
Autumn 34 w/cf
Just so you don't use a spurious argument, diabetes is no longer a SSA Blue Book listed disorder.
http://www.disabilitybenefitscenter.org/blog/diabetes-evaluation-SSA
From that weblink, it looks like other chronic conditions are fighting the same battle with restricted SSDI access. Maybe you can find some allies in other people whose access to SSDI benefits have been impractically restricted.
http://www.disabilitybenefitscenter.org/blog/diabetes-evaluation-SSA
From that weblink, it looks like other chronic conditions are fighting the same battle with restricted SSDI access. Maybe you can find some allies in other people whose access to SSDI benefits have been impractically restricted.
believingjesus
Banned
Thanks for the correction even though I wasn't the one who first mentioned diabetes being a given by the SSA. I guess only the strong survive.
Thanks, Ethan. That's very good to know. Autumn and I were going on the post of Mike Amend who has diabetes, while raising a child with CF. Not sure whether he is a member here but appears to be on FB. He made mention of diabetes as a disability.
I'm astonished. "Some allies"? With all due respect Ethan, "impractical restriction" seems arbitrary. Your statement is almost dismissive! You make it sound like SSDI is good as is. If I understand you, I completely disagree. The point is having a choice for ALL patients, should a patient's fate change. My fate could change. Your fate could change. CF listed as a disability or easing the restrictions for everyone is far better than cherry picking those who have it the worst. You make it sound like it's somebody else's problem until it becomes yours. No offense and I really mean that and I mean nothing personal. I hope I'm reading you wrong. This is about choice and options. Why limit people to access?
It seems to me that people are all hung up on words like "hand out" or "disability". I understand the argument about “Compassionate Allowance”. I get that. No one wants a hand out, nor do many CF'rs want the stigma of being classified as "disabled". But semantics and labels aside, people are missing the point. It's really more about protection and choice. Patients want to earn it and not have it handed to them, until it comes to the point where they can't earn it. Then what? Where's the safety net? Suddenly life becomes a huge struggle if that next job doesn't materialize. SSDI application becomes a nightmare while the clock is ticking on your health. People suffer and even die, waiting to be approved, then waiting an additional 24 months for Medicare, since SSDI and Medicare are not in sync. You've read the FB and CF posts and what CF'rs and families have had to endure. It's really an outrage and should never be. Do you think I'm being overly dramatic? Post the question and let's see. What better way to find out, right?
So really, what's the point of bringing the little patients along in this world, only to be cast to the wind as adults? What's the point of all this fund raising and fancy, expensive drugs if adults have to struggle, do without or even die because of "impractical restrictions"? You're right about that. They are impractical. And if I could be so bold, because the CF community is not entirely simpatico, we all do this to ourselves. My take is that some patients/families who don't have problems don't appear to be concerned about collectively solving issues for those patients who do have problems...until they find themselves with serious problems. I'm I wrong? I sure hope so. We should all come together and protect each other and get past all the semantics and labels.
Ethan I mean all of this constructively, not personally and I'm glad you offered your opinion. It's a very good point. But do you really think this is a worthless endeavor? Are we wasting our time? Further, what would you do if suddenly you lost your job? What then? SSDI is a last resort, certainly. But at least it should be something easy to resort to! So whether an ease of restrictions or CF as a disability, something needs to change, right? I think the later solves all problems.
Again, nothing personal my friend. ;-)
Randford
I'm astonished. "Some allies"? With all due respect Ethan, "impractical restriction" seems arbitrary. Your statement is almost dismissive! You make it sound like SSDI is good as is. If I understand you, I completely disagree. The point is having a choice for ALL patients, should a patient's fate change. My fate could change. Your fate could change. CF listed as a disability or easing the restrictions for everyone is far better than cherry picking those who have it the worst. You make it sound like it's somebody else's problem until it becomes yours. No offense and I really mean that and I mean nothing personal. I hope I'm reading you wrong. This is about choice and options. Why limit people to access?
It seems to me that people are all hung up on words like "hand out" or "disability". I understand the argument about “Compassionate Allowance”. I get that. No one wants a hand out, nor do many CF'rs want the stigma of being classified as "disabled". But semantics and labels aside, people are missing the point. It's really more about protection and choice. Patients want to earn it and not have it handed to them, until it comes to the point where they can't earn it. Then what? Where's the safety net? Suddenly life becomes a huge struggle if that next job doesn't materialize. SSDI application becomes a nightmare while the clock is ticking on your health. People suffer and even die, waiting to be approved, then waiting an additional 24 months for Medicare, since SSDI and Medicare are not in sync. You've read the FB and CF posts and what CF'rs and families have had to endure. It's really an outrage and should never be. Do you think I'm being overly dramatic? Post the question and let's see. What better way to find out, right?
So really, what's the point of bringing the little patients along in this world, only to be cast to the wind as adults? What's the point of all this fund raising and fancy, expensive drugs if adults have to struggle, do without or even die because of "impractical restrictions"? You're right about that. They are impractical. And if I could be so bold, because the CF community is not entirely simpatico, we all do this to ourselves. My take is that some patients/families who don't have problems don't appear to be concerned about collectively solving issues for those patients who do have problems...until they find themselves with serious problems. I'm I wrong? I sure hope so. We should all come together and protect each other and get past all the semantics and labels.
Ethan I mean all of this constructively, not personally and I'm glad you offered your opinion. It's a very good point. But do you really think this is a worthless endeavor? Are we wasting our time? Further, what would you do if suddenly you lost your job? What then? SSDI is a last resort, certainly. But at least it should be something easy to resort to! So whether an ease of restrictions or CF as a disability, something needs to change, right? I think the later solves all problems.
Again, nothing personal my friend. ;-)
Randford
Thanks Ethan, you're correct.
I apologize for any confusion I caused with that quote, as I was really focused on the latter part of his comment, rather than the comments about diabetes. I thought he made some really great points with: "it is impossible to thrive with CF unless you put in hours of daily therapy and submit yourself to weeks of being in the hospital. Do not look at the word, disabled, and believe it will hold you back. It will not. However, the label will provide much needed protection. There is no question in my mind that CF patients should be covered under a protective status. Not because of what they cannot do, but so that they are enabled to contribute to society AND stay healthy." I especially like the last sentence.
Anyway, thanks again for clarifying.
Autumn
Yes, Ethan is correct and I'm glad he brought it to our attention. Kudos, Ethan. Thanks! No need to apologize, Autumn. It was a legitimate quote. I might ask our friend Mike about his situation. Heck, I'm learning as we go!! ;-)
Thanks Ethan, you're correct.
I apologize for any confusion I caused with that quote, as I was really focused on the latter part of his comment, rather than the comments about diabetes. I thought he made some really great points with: "it is impossible to thrive with CF unless you put in hours of daily therapy and submit yourself to weeks of being in the hospital. Do not look at the word, disabled, and believe it will hold you back. It will not. However, the label will provide much needed protection. There is no question in my mind that CF patients should be covered under a protective status. Not because of what they cannot do, but so that they are enabled to contribute to society AND stay healthy." I especially like the last sentence.
Anyway, thanks again for clarifying.
Autumn
“No one means all he says, and yet very few say all they mean, for words are slippery and thought is vicious,” Henry Adams. Apparently I’m not very good using words to convey my thoughts. So I’ll try again (practice makes perfect, maybe).
My previous post was meant in all sincerity but let me clarify. In reading around about the SSA blue book listing on diabetes I got the impressions that the general trend of the SSA is towards more stringent eligibility requirements for all chronic conditions not just CF. (Maybe Mike got on SSDI before it was delisted). These more stringent requirements feel ‘impractically restrictive’ and in my mind should be overturned.
If the general trend for the SSA is toward more restrictions, then you could ally with other organizations that also feel like the SSA is treating them unfairly (i.e. they feel the SSA definitions are impractical and restrictive). If you get some alliance with these other organizations, then your voice goes from 30,000 CF people to 130 million suffers of chronic conditions. With 130 million allies you now have a voice that the government can hear.
My question to you, what exactly do you want beyond the CFF recommendations (linked below)? Note: I agree 100% with the below CFF letter. Is there some other “Disability Declaration” that needs to be considered outside of the SSDI?
So here is my proposal (hopefully stated clear and specific enough to be easily defendable):
What say ye?
http://www.cff.org/UploadedFiles/GetInvolved/Advocate/SSA-Disability-Critera-Comments-4-13.pdf
My previous post was meant in all sincerity but let me clarify. In reading around about the SSA blue book listing on diabetes I got the impressions that the general trend of the SSA is towards more stringent eligibility requirements for all chronic conditions not just CF. (Maybe Mike got on SSDI before it was delisted). These more stringent requirements feel ‘impractically restrictive’ and in my mind should be overturned.
If the general trend for the SSA is toward more restrictions, then you could ally with other organizations that also feel like the SSA is treating them unfairly (i.e. they feel the SSA definitions are impractical and restrictive). If you get some alliance with these other organizations, then your voice goes from 30,000 CF people to 130 million suffers of chronic conditions. With 130 million allies you now have a voice that the government can hear.
My question to you, what exactly do you want beyond the CFF recommendations (linked below)? Note: I agree 100% with the below CFF letter. Is there some other “Disability Declaration” that needs to be considered outside of the SSDI?
So here is my proposal (hopefully stated clear and specific enough to be easily defendable):
- SSA should adopt the recommendation of the CFF letter, and
- Congress should work to close the 24 month gap between receiving SSDI and Medicare.
What say ye?
http://www.cff.org/UploadedFiles/GetInvolved/Advocate/SSA-Disability-Critera-Comments-4-13.pdf
I do fundamentally worry about the cost of social programs (even the ones that benefit me) and that eventually the country won't be able to fund everyone we have committed to help. Also I look around me and see that it isn't just CF patients that are fighting the 'other half of the battle'. I have neighbors with cancer, chron's, kidney failure, diabetes, back pain and many other ailments that are costing them money, health, and comfort. I have neighbors in good health that can't find jobs, or have family cause financial problems. I just can't see how I ask for money for myself (or even my future self), when I'm making it by better than many of my neighbors. Somehow it feels hypocritical.
Aside: Randford and Believing I completely appreciate your passion in this topic. It takes passionate people to move the status quo. Autumn's posting about real people and the real problems they face (like Mike's story) is very persuasive. I appreciate that you are working to understand someone with different thinking (doing so will probably help you develop even stronger arguments). And I'm softer on my position than I was when I joined this forum. Even if you can find consensus with a RINO like me, you will still have a way to go to develop an argument strong enough to move a more ideological pure Republican or Libertarian. Keep at it, if you don't move them all the way to your position, maybe you could move them to a position like mine.
Aside: Randford and Believing I completely appreciate your passion in this topic. It takes passionate people to move the status quo. Autumn's posting about real people and the real problems they face (like Mike's story) is very persuasive. I appreciate that you are working to understand someone with different thinking (doing so will probably help you develop even stronger arguments). And I'm softer on my position than I was when I joined this forum. Even if you can find consensus with a RINO like me, you will still have a way to go to develop an argument strong enough to move a more ideological pure Republican or Libertarian. Keep at it, if you don't move them all the way to your position, maybe you could move them to a position like mine
.believingjesus
Banned
I like your suggestions of the SSA accepting the CFF letter and also the suggestion that the SSA waive the 24 month waiting period once a person is declared "disabled". I agree that there are others in the world with cancer, etc. that need help too. I believe we should also help those people by allowing them on SSDI too. The only gap in this plan is when a person with CF's health starts to decline and they need to really spend all the time they can trying to maintain their lung function and working on their weight, doing all the treatments, exercising, etc. but they still have to work full-time and are not able to get this done then their health declines. I believe the CFF should have gone a step further and included people with a lung function of 60% or lower to receive SSDI and Medicare. But I do like your suggestions Ethan.
I still feel there is a problem when people can't afford their medicines and are struggling with maintaining their health. I strongly feel the CFF should have a program to help people with cystic fibrosis, maybe taking charitable contributions for this purpose. I don't feel anyone should have to have their health decline because of financial means.
But your plan is good. We are all probably beating our heads against a brick wall as getting something changed is hard.
I still feel there is a problem when people can't afford their medicines and are struggling with maintaining their health. I strongly feel the CFF should have a program to help people with cystic fibrosis, maybe taking charitable contributions for this purpose. I don't feel anyone should have to have their health decline because of financial means.
But your plan is good. We are all probably beating our heads against a brick wall as getting something changed is hard.
believingjesus
Banned
Or in place of the CFF taking contributions to help people with CF with affording their medicines, they could actually work with the pharmaceutical companies to cover the price the patient can not afford and insurance won't cover when they are high ($300 for pulmozyme is high). I thought the PARC did more than direct you to copay programs that won't help with the biggest share of the cost. If this is what the PARC does they need to improve drastically. Or maybe use some of that 3.3 billion dollars to set up a program to help people if they can't work with the pharmaceutical companies. Anyways, this is a pipedream probably.
I feel exactly the same as you, Ethan. You have a great deal of pride as I do. There is no doubt this country is stressed to the max with social programs and giveaways to those who have not earned those entitlements. Currently we sit on a bubble of $17 trillion in debt so we all know where it's going. $22 trillion is the cap and quantitative easing will not last for ever. Even the UK is now employing QE. It's very concerning and won't end well, globally. There are so many in this country, undeserving of an entitlements, yet there are all sorts of people, as you mention, with cancer, crohn's, kidney failure, diabetes, back pain and many other ailments that are costing them money and they need help. And like you, I can't stand the thought of a handout. I would rather be employed and stand on my own two feet. But just as you, I consider my future self and what might happen to me, family, etc., should all else fail.
Your statement is very noble and selfless about taking assistance while others struggle. I feel the same way about taking any assistance, even from PARC, for example. Should I ever need it, I can't take it because I think of all those little CF patients and their families who are in much greater need from a finite source. It would be selfish of me to take a handout when those younger folks need a shot at life. I had my shot. So yes, I understand how you feel.
I only maintain that should we ever need SSDI/Medicare, it should be easier to access or at least a given. Unfortunately CF is a degenerative disease so we are all in a collision course with SSDI/Medicare. It's inevitable. And when we cross that threshold, that's when the nightmare begins. The waiting, the wondering, the stress, the deterioration of health. Even the fear of death. Perhaps a modest percentage of patients but it grows as we all live longer. Statistically, I'm way past my expiration date but I've been very lucky...so far. However, I know what's coming. At that moment of decision, we all ponder the quality of life, with few options.
And you are right. Establishment republicans will dig in, as well as libertarians. Ultimately it's all about money, left and right and money talks. When I we see a large potential voting block apparently being given some form of amnesty, as well as a free hand out like health care coverage, Medicare, etc...everyone is fighting much harder for a smaller piece of the pie. To that degree, suddenly I don't feel so selfish proposing CF as a disability.
As you say, "It takes passionate people to move the status quo." Well, I'm passionate as you, Believing and Autumn are passionate. There are many other CF patients and families as passionate, given the Facebook response. It's just the tip of the iceberg but we have to speak up. I'm sure there are many pitfalls and caveats to this issue. But as I said, I'm just the kid in the room asking "why not" in a room full of adults saying, "what for". Perhaps we all can continue the conversation and convince the powers at CFF why it matters. Only then, they can tell us why or why not. But we have to try to lobby for change.
No politician would look in the eyes of a CF child and say, "you don't deserve to live". So why indicate the opposite to CF adults? We deserve to live as well.
I appreciate your passion, Ethan. You have family to live for. That is a great responsibility for a CF patient. I applaud you. Let's keep it going. Maybe something positive will happen.
Randford, 52 w/CF
Your statement is very noble and selfless about taking assistance while others struggle. I feel the same way about taking any assistance, even from PARC, for example. Should I ever need it, I can't take it because I think of all those little CF patients and their families who are in much greater need from a finite source. It would be selfish of me to take a handout when those younger folks need a shot at life. I had my shot. So yes, I understand how you feel.
I only maintain that should we ever need SSDI/Medicare, it should be easier to access or at least a given. Unfortunately CF is a degenerative disease so we are all in a collision course with SSDI/Medicare. It's inevitable. And when we cross that threshold, that's when the nightmare begins. The waiting, the wondering, the stress, the deterioration of health. Even the fear of death. Perhaps a modest percentage of patients but it grows as we all live longer. Statistically, I'm way past my expiration date but I've been very lucky...so far. However, I know what's coming. At that moment of decision, we all ponder the quality of life, with few options.
And you are right. Establishment republicans will dig in, as well as libertarians. Ultimately it's all about money, left and right and money talks. When I we see a large potential voting block apparently being given some form of amnesty, as well as a free hand out like health care coverage, Medicare, etc...everyone is fighting much harder for a smaller piece of the pie. To that degree, suddenly I don't feel so selfish proposing CF as a disability.
As you say, "It takes passionate people to move the status quo." Well, I'm passionate as you, Believing and Autumn are passionate. There are many other CF patients and families as passionate, given the Facebook response. It's just the tip of the iceberg but we have to speak up. I'm sure there are many pitfalls and caveats to this issue. But as I said, I'm just the kid in the room asking "why not" in a room full of adults saying, "what for". Perhaps we all can continue the conversation and convince the powers at CFF why it matters. Only then, they can tell us why or why not. But we have to try to lobby for change.
No politician would look in the eyes of a CF child and say, "you don't deserve to live". So why indicate the opposite to CF adults? We deserve to live as well.
I appreciate your passion, Ethan. You have family to live for. That is a great responsibility for a CF patient. I applaud you. Let's keep it going. Maybe something positive will happen.
Randford, 52 w/CF
I do fundamentally worry about the cost of social programs (even the ones that benefit me) and that eventually the country won't be able to fund everyone we have committed to help. Also I look around me and see that it isn't just CF patients that are fighting the 'other half of the battle'. I have neighbors with cancer, chron's, kidney failure, diabetes, back pain and many other ailments that are costing them money, health, and comfort. I have neighbors in good health that can't find jobs, or have family cause financial problems. I just can't see how I ask for money for myself (or even my future self), when I'm making it by better than many of my neighbors. Somehow it feels hypocritical.
Aside: Randford and Believing I completely appreciate your passion in this topic. It takes passionate people to move the status quo. Autumn's posting about real people and the real problems they face (like Mike's story) is very persuasive. I appreciate that you are working to understand someone with different thinking (doing so will probably help you develop even stronger arguments). And I'm softer on my position than I was when I joined this forum. Even if you can find consensus with a RINO like me, you will still have a way to go to develop an argument strong enough to move a more ideological pure Republican or Libertarian. Keep at it, if you don't move them all the way to your position, maybe you could move them to a position like mine
I agree with you, Believing. I would hope they might waive the 24 month Medicare waiting period at the very least. And they should go further to ease the qualifications for SSDI. People also shouldn't have to apply, wait six month, get denied, then reapply. That happens to all applicants. In addition, we are all encouraged to utilize the CF legal team. Never go into this without an attorney when pursuing SSDI.
PARC is a good resource but yes, they are very limited. As long as you have health insurance, they can assist with a copay assist, for example. And yes, you can go to the assistance programs directly offered by the pharmaceuticals. If you're destitute and without insurance, they offer Medicade, for example.
But you are right. There is no doubt that CFF could take those Vertex royalty dollars and enhance PARC. When you see how health insurance companies deny certain types of meds or even limit dosage coverage, it's an outrage. We help CFF raise all that money, the researchers do amazing work to treat us, only for the vast majority of us to have to fight and beg the insurance companies to cover treatments. As a result, patients cannot follow doctor's orders for treatment and our health suffers.
Then enter the ACA and all it's problems. Private insurers are pushing people out of grandfathered plans by rate hikes to deliberately push them into ACA plans. Suddenly, there are coverage issue, network issues, doctor issues, etc. It's a madhouse right now. Just as I keep harping. It's the other half of the battle. It's like placing a miracle drug on a pedestal too high for many of us to reach. Affordability is our death panel. That and applying for SSDI.
So yes, we should raise money for research and that $3.3 Billion should be used for that but...CFF should really concentrate on the other half. They already have that engine set up for research and treatments. No question they got that nailed down. Now they need to help us get those treatments or assistance or whatever else. They are the only game in town with the money and leverage. What's the point of having a solution if you can't access and utilize it?
Ultimately SSDI access is the 800 pound guerilla in the room. At some point, we'll all have to deal with it.
Randford
But you are right. There is no doubt that CFF could take those Vertex royalty dollars and enhance PARC. When you see how health insurance companies deny certain types of meds or even limit dosage coverage, it's an outrage. We help CFF raise all that money, the researchers do amazing work to treat us, only for the vast majority of us to have to fight and beg the insurance companies to cover treatments. As a result, patients cannot follow doctor's orders for treatment and our health suffers.
Then enter the ACA and all it's problems. Private insurers are pushing people out of grandfathered plans by rate hikes to deliberately push them into ACA plans. Suddenly, there are coverage issue, network issues, doctor issues, etc. It's a madhouse right now. Just as I keep harping. It's the other half of the battle. It's like placing a miracle drug on a pedestal too high for many of us to reach. Affordability is our death panel. That and applying for SSDI.
So yes, we should raise money for research and that $3.3 Billion should be used for that but...CFF should really concentrate on the other half. They already have that engine set up for research and treatments. No question they got that nailed down. Now they need to help us get those treatments or assistance or whatever else. They are the only game in town with the money and leverage. What's the point of having a solution if you can't access and utilize it?
Ultimately SSDI access is the 800 pound guerilla in the room. At some point, we'll all have to deal with it.
Randford
believingjesus
Banned
I agree wholeheartedly. I am happy right now as TreasureGoddess posted that there is a place called The Assistance Fund that helped them go from a $700/month cost for Pulmozyme to $10/month! That gives me hope and I'm sure it gives others hope who have stated they can not afford their medicines. Yay!
I did read how Autumn could not get her insurance company to allow her 2 puffs a day of Seravent. Outrageous. I know that little green inhaler is $200/month. I guess insurance thinks people have money growing on trees or they just don't need what their doctor prescribes.? That made me nervous for when my son gets different insurance next year. Who knows what he will encounter? I feel cf just constantly gives you battles to face in addition to just regular real life. My son always figures a way around his obstacles and I hope he always does and doesn't let them overcome him. He is one of the lights of my life.
Anyways yes I know that the CFF should do things to help people more than redirect them but maybe they will work on that. They are the only one out there we have in our corner so I sure hope so as it is very needed.
I don't know where to go from here. I don't feel it does any good to gripe about it on here if we can't get any where with it. I really don't know how to proceed. I guess wait and see what the SSA will decide and try to encourage the CFF to do more.
I did read how Autumn could not get her insurance company to allow her 2 puffs a day of Seravent. Outrageous. I know that little green inhaler is $200/month. I guess insurance thinks people have money growing on trees or they just don't need what their doctor prescribes.? That made me nervous for when my son gets different insurance next year. Who knows what he will encounter? I feel cf just constantly gives you battles to face in addition to just regular real life. My son always figures a way around his obstacles and I hope he always does and doesn't let them overcome him. He is one of the lights of my life.
Anyways yes I know that the CFF should do things to help people more than redirect them but maybe they will work on that. They are the only one out there we have in our corner so I sure hope so as it is very needed.
I don't know where to go from here. I don't feel it does any good to gripe about it on here if we can't get any where with it. I really don't know how to proceed. I guess wait and see what the SSA will decide and try to encourage the CFF to do more.
Glad to hear about the Assistance Fund. Glad that worked out.
Yeah, it's a mess. Insurance companies have a fiduciary responsibility to their shareholders to be profitable...not make people healthy, hence why they are rating up grandfathered plans, making them so expensive to push people into ACA plans, like it or not...because it's far more profitable for carriers to get ACA reimbursements from the government. And what people don't know is that those reimbursements are a blank check from the government so it's party time for the carriers. For us? We discover all sorts of problems with doctors, networks, meds, co-pays, deductibles. I could go on.
But fear not. The insurance companies are busy cutting us out, and cutting out insurance broker/agents or intermediaries (between insurees and insurers). Broker/agent jobs have been virtually destroyed by ACA. But karma's a "B" because since carriers are themselves are intermediaries (between hospitals and patients), hospitals have grown tired of spending tons of money for administrators just to beg and chase the reimbursements from the insurance carriers. Enough is enough.
So what's next? Hospitals will begin offering their own unique insurance products. They will create their own pools, cutting out the carriers, cutting out the overhead (administrators) and lowering costs for everyone. So ACA plans won't always be the only choice. Just give it time because it's coming. Insurance companies are going the way of the dinosaur or will no longer exist as we once knew them. Good riddance. It will take time but we will see better, more affordable products/services from hospitals and associated medical services. And ya know...wouldn't it be great for the foundation to get into the insurance game? Of course just by mentioning that, I think they all just turned white as a sheet but hey, it's worth discussing, right? ;-)
Where we go from here depends on CFF. No doubt they have the funding now. Just the interest alone on $3.3 Billion could go a long way, beyond treatments and research. They have that set up rock solid but none of it matters if we cannot access meds, have them denied or limited, based on insurance company formularies. Of course CF being declared a disability would solve a great number of problems for us. I just wish CFF would tell us where we are on negotiations with SSA.
Here's something intereting. I haven't read it yet but it's worth a read and may offer so clue as to where we are on this.
http://thedianerehmshow.org/shows/2...ew_opportunities_new_questions_for_nonprofits
Randford
Yeah, it's a mess. Insurance companies have a fiduciary responsibility to their shareholders to be profitable...not make people healthy, hence why they are rating up grandfathered plans, making them so expensive to push people into ACA plans, like it or not...because it's far more profitable for carriers to get ACA reimbursements from the government. And what people don't know is that those reimbursements are a blank check from the government so it's party time for the carriers. For us? We discover all sorts of problems with doctors, networks, meds, co-pays, deductibles. I could go on.
But fear not. The insurance companies are busy cutting us out, and cutting out insurance broker/agents or intermediaries (between insurees and insurers). Broker/agent jobs have been virtually destroyed by ACA. But karma's a "B" because since carriers are themselves are intermediaries (between hospitals and patients), hospitals have grown tired of spending tons of money for administrators just to beg and chase the reimbursements from the insurance carriers. Enough is enough.
So what's next? Hospitals will begin offering their own unique insurance products. They will create their own pools, cutting out the carriers, cutting out the overhead (administrators) and lowering costs for everyone. So ACA plans won't always be the only choice. Just give it time because it's coming. Insurance companies are going the way of the dinosaur or will no longer exist as we once knew them. Good riddance. It will take time but we will see better, more affordable products/services from hospitals and associated medical services. And ya know...wouldn't it be great for the foundation to get into the insurance game? Of course just by mentioning that, I think they all just turned white as a sheet but hey, it's worth discussing, right? ;-)
Where we go from here depends on CFF. No doubt they have the funding now. Just the interest alone on $3.3 Billion could go a long way, beyond treatments and research. They have that set up rock solid but none of it matters if we cannot access meds, have them denied or limited, based on insurance company formularies. Of course CF being declared a disability would solve a great number of problems for us. I just wish CFF would tell us where we are on negotiations with SSA.
Here's something intereting. I haven't read it yet but it's worth a read and may offer so clue as to where we are on this.
http://thedianerehmshow.org/shows/2...ew_opportunities_new_questions_for_nonprofits
Randford
C
Cutecurlz
Guest
It is considered a disability here in British Columbia, Canada
believingjesus
Banned
Thank you for that Cutecurlz. Very strange how Canada considers it a disability but not the U.S. unless you are close to transplant. The disease doesn't change from one place to the next. What a shame how the SSA views cystic fibrosis.
Thank you Randford for your last post of the CF Foundations discussion. I enjoyed reading that they are working on cures and medicines.
Thank you Randford for your last post of the CF Foundations discussion. I enjoyed reading that they are working on cures and medicines.
Cutecurlz, thank you for telling us how thing go in Canada. Yes, "Believeing" it is shameful how SSA views Cystic Fibrosis and other diseases. Some patients/families argue the pros and cons of the "disability" label...yet we give billions away to the self-entitled, giveaways to those who have not entered this country honorably, an billions to foreign lands. Yet, Americans have to beg. CF patients have to beg. No, we don't want a handout. We just want easier access, should the situation merit.
Here we have CFF who has a lot of power but it makes one wonder whether the power, leverage and the $3.3 Billion, can make a difference. We certainly hope so but we have to let our voice heard. And it would be nice for CFF to let us know where we all stand on this.
Here we have CFF who has a lot of power but it makes one wonder whether the power, leverage and the $3.3 Billion, can make a difference. We certainly hope so but we have to let our voice heard. And it would be nice for CFF to let us know where we all stand on this.