Can someone explain to me health insurance costs for CF employees for employers?
Everyone has made valid points here and there is certainly recourse, should issues arise for patients, with respect to insurance, employment and even disability. But I caution that just because some CF patients have had good experiences, it doesn't mean that others don't suffer a worse fate. It's myopic to think that problems don't exist because quite frankly, they do and perhaps more than we think. There are people outside this forum who've dealt with serious issues. There are plenty of posts in the archives of this forum that support the claim that CF patients do struggle, with respect to employment and disability, albeit not always ubiquitous and direct, so employers can avoid legal action. But bad things do happen and not necessarily by a given template. So to be fair, everyone has a completely different circumstance. Yet others sometimes seek to discount those circumstances by offering what works in their specific situation. Those suggestions, although good, just may work...or may not. No situation is the same.
But let’s forget discrimination for a second. For that matter, let’s forget disability. There are plenty of ways to lose a job, health issue or not. So what happens when you lose your job and have financial responsibilities on top of maintaining your health insurance and health? What are the safeguards, beyond unemployment compensation, etc? Some folks have solutions but what about the rest?
How many patients fall between employment and disability? That’s really the point. And when that happens, what does a patient do? Get a job, right? Well, what if the job market is so competitive that getting any job is nearly impossible? Do you lose everything and become destitute? Do you go without treatment? Of course not. Yet it happens. Then add a significant medical event and out of pocket expenses. It’s a disaster in the making.
Not everyone has the support of family and friends and even if they do, there is no guarantee in this job market and economy. But the meter is running and bills are to be paid. Who can you turn to, beyond PARC? Well, you do just like anyone else out in the world. You get out there, hustle and hope for the best. But what if that fails?
Imagine that CFF/PARC offered a resource for patients to reach out to employers looking for potential candidates? What a great thing to do. It would give great comfort to patients who could risk losing it all. No patient wants to go on welfare/Medicaid or even SSDI. And perhaps there are many other resources we could argue but that’s not the point.
CF adults need either one of two things: employment or disability. There’s really not much to deal with, in between. So if you can’t get a job and don’t qualify for SSDI, why not offer an employment resource? It just makes since and it’s better than nothing. Further, access to SSDI should be made easier so patients could go there, should they have the need but at least the option is there.
What concerns me is that the rally cries are met with a collective yawn on this forum. It’s almost as though, “as long as it happens to the other guy, it’s their problem”. Or “I don’t have a problem so no one else should, nor should I care”. We’re all in good shape right now but things change. What if any of us lost our job? Whose problem is it? Well…it’s your problem, right. Okay then…who’s going to help you? Depends on the circumstance. But at least CFF could offer additional options and lobby for easier SSDI access, should patients need it. What’s the harm in that?
I mean this constructively. What’s sad it that we have a collective group of people on this forum who don’t appear to have cohesion with respect to these issues, yet these issues eventually affect us all. Herding cats? Perhaps. And really, it’s not about responding to this forum or even to this post or my posts, far from it. It’s about contacting CFF as a collective group and proposing ideas and solutions as one voice. Good luck with that, right? Let’s hope.
To be clear, there is no fear mongering here, as some have suggested. With all due respect, it is irresponsible to suggest that a person would not be fired because of their high costs to a company. It happens every day, whether or not there is a health issue. Just not for those obvious reasons to avoid lawsuits, whether it’s CF or some other issue. Maybe it doesn’t at some companies, but it does happen in the world and with great frequency.
These are simply statements based on the individual experiences. That includes the good and bad from everyone. I would not attempt to paint a pretty picture or to even apologize for my views or the views of others, simply because they don't fit a specific narrative or template on this forum. There is no pixy dust solution but perhaps deeper, long term solutions, recourse and certainly further discussion. To qualify, everyone here has offered great information and advice on recourse and that's a good thing, so this reply is not meant to be personal on any level. We all have the similar struggles and all views are respected.
So...we can discuss minutia, ad nauseum. And that’s productive to a point. But at a 20,000 foot view, the ultimate point here is that CF patients are not protected enough and need a safety net. As we all age and have more physical and financial challenges, more protections should be considered and acted upon. I would like to think that we can agree on that.
But I digress... ;-)
But let’s forget discrimination for a second. For that matter, let’s forget disability. There are plenty of ways to lose a job, health issue or not. So what happens when you lose your job and have financial responsibilities on top of maintaining your health insurance and health? What are the safeguards, beyond unemployment compensation, etc? Some folks have solutions but what about the rest?
How many patients fall between employment and disability? That’s really the point. And when that happens, what does a patient do? Get a job, right? Well, what if the job market is so competitive that getting any job is nearly impossible? Do you lose everything and become destitute? Do you go without treatment? Of course not. Yet it happens. Then add a significant medical event and out of pocket expenses. It’s a disaster in the making.
Not everyone has the support of family and friends and even if they do, there is no guarantee in this job market and economy. But the meter is running and bills are to be paid. Who can you turn to, beyond PARC? Well, you do just like anyone else out in the world. You get out there, hustle and hope for the best. But what if that fails?
Imagine that CFF/PARC offered a resource for patients to reach out to employers looking for potential candidates? What a great thing to do. It would give great comfort to patients who could risk losing it all. No patient wants to go on welfare/Medicaid or even SSDI. And perhaps there are many other resources we could argue but that’s not the point.
CF adults need either one of two things: employment or disability. There’s really not much to deal with, in between. So if you can’t get a job and don’t qualify for SSDI, why not offer an employment resource? It just makes since and it’s better than nothing. Further, access to SSDI should be made easier so patients could go there, should they have the need but at least the option is there.
What concerns me is that the rally cries are met with a collective yawn on this forum. It’s almost as though, “as long as it happens to the other guy, it’s their problem”. Or “I don’t have a problem so no one else should, nor should I care”. We’re all in good shape right now but things change. What if any of us lost our job? Whose problem is it? Well…it’s your problem, right. Okay then…who’s going to help you? Depends on the circumstance. But at least CFF could offer additional options and lobby for easier SSDI access, should patients need it. What’s the harm in that?
I mean this constructively. What’s sad it that we have a collective group of people on this forum who don’t appear to have cohesion with respect to these issues, yet these issues eventually affect us all. Herding cats? Perhaps. And really, it’s not about responding to this forum or even to this post or my posts, far from it. It’s about contacting CFF as a collective group and proposing ideas and solutions as one voice. Good luck with that, right? Let’s hope.
To be clear, there is no fear mongering here, as some have suggested. With all due respect, it is irresponsible to suggest that a person would not be fired because of their high costs to a company. It happens every day, whether or not there is a health issue. Just not for those obvious reasons to avoid lawsuits, whether it’s CF or some other issue. Maybe it doesn’t at some companies, but it does happen in the world and with great frequency.
These are simply statements based on the individual experiences. That includes the good and bad from everyone. I would not attempt to paint a pretty picture or to even apologize for my views or the views of others, simply because they don't fit a specific narrative or template on this forum. There is no pixy dust solution but perhaps deeper, long term solutions, recourse and certainly further discussion. To qualify, everyone here has offered great information and advice on recourse and that's a good thing, so this reply is not meant to be personal on any level. We all have the similar struggles and all views are respected.
So...we can discuss minutia, ad nauseum. And that’s productive to a point. But at a 20,000 foot view, the ultimate point here is that CF patients are not protected enough and need a safety net. As we all age and have more physical and financial challenges, more protections should be considered and acted upon. I would like to think that we can agree on that.
But I digress... ;-)
I suppose to rally the troops to a singular political point you'd need to have politically homogenous troops. Heck not everyone here is even genetically homogeneous. I feel like the Laws do a lot more for me now than they did 10 years ago (when I was launching into adulthood, I was very concerned about coverage) and hope they continue to move carefully in a direction that protects people from the financial part of our health care mess.
I'm just not sure a CF dx should automatically qualify you for someone else's largess, (admitting that I do benefit from others $$$ when it comes to health coverage). I do think SSD needs to be realistic (you can't work if you can't breathe, are in the hospital constantly, or hurt to high heaven) and a basic societal safety net is a good thing but I’m just not onboard with an automatic handout for being dealt a bad hand.
I'm just not sure a CF dx should automatically qualify you for someone else's largess, (admitting that I do benefit from others $$$ when it comes to health coverage). I do think SSD needs to be realistic (you can't work if you can't breathe, are in the hospital constantly, or hurt to high heaven) and a basic societal safety net is a good thing but I’m just not onboard with an automatic handout for being dealt a bad hand.
And because I like telling stories: Around 2008, my self-employed older CF brother lost a good deal of his business revenue due to the recession. I saw him and his family of 7 (yes they have 5 kids) survive on next to no income (like less than 5 digits). It was very hard for them. They burned through savings, got some funds from family, got some church and government help, and he still consumed all his expensive treatments and pills. They survived, and eventually recovered after a couple years and aren't showing the worse for wear (okay his wife went a little gray). They also have dozens of touching stories about the kindness of the human race and a super solid love of each other and their family.
From this (and also from facing several rounds of layoffs) I learned the best preparedness plan was my own preparedness plan. It means hoarding extra emergency savings, paying off my debts, being a bit frugal, figuring out how to maintain insurance coverage if let go, asking my clinic what to do about drugs if I lost my job. I found I have a safety nets that includes all I could do plus a very supportive family, a supportive church, and many existing government and charitable programs for those in need. Doing my own prep and learning about the support that is already out their put a lot of peace in my mind.
From this (and also from facing several rounds of layoffs) I learned the best preparedness plan was my own preparedness plan. It means hoarding extra emergency savings, paying off my debts, being a bit frugal, figuring out how to maintain insurance coverage if let go, asking my clinic what to do about drugs if I lost my job. I found I have a safety nets that includes all I could do plus a very supportive family, a supportive church, and many existing government and charitable programs for those in need. Doing my own prep and learning about the support that is already out their put a lot of peace in my mind.
Randford, I'd like to clarify that I am behind these efforts 100 percent. I, and many others in the CF communtiy took action to try to stop the changes the SSA proposed almost 2 years ago to make getting SSDI even more difficult than it currently is. I have yet to hear if these changes were adopted. The CFF was very involved in the fight against it, so I do believe they are listening to us and understand our plight. That, however, does not mean that I believe there isn't room for more advocacy on our behalf.
I also think that you are right, that until a person needs it, it's kind of like "eh". When I graduated from college I honestly thought I was going to work and support myself for many years, I had never thought much about SSD at all. CF had different plans with exacerbation after exacerbation after exacerbation. I ended up applying for SSDI FAR before I ever thought I would need it, and it was one of the darkest times of my life. I learned all about the application process and the "impairment listings" etc. Things I previously had no clue about. I don't think the average CFer does. Another thing that is sad about the process is that although often times a CFer will CLEARLY meet the impairment listing and show that they are disabled by Social Security's standards, they will be denied the first time they apply. It's all part of a weeding out, and they hope that you will give up and go away because it is exhausting.
By this time often a person hasn't been working for many many months, what are they to do while waiting?? No income, no health insurance etc. and often getting sicker and sicker. It's abhorrent what some people with CF have to go through to receive benefits. As you have mentioned, some people have no family/friends/church support. So then what?? Another fact about Social Security, is that after one is awarded benefits and deemed "disabled", there is 24 month waiting period before Medicare coverage begins. Sadly, I have heard of more than one CFer die long before their Medicare benefit even kicks in.
Before going on disability I was like most every adult with CF who wanted to do it all and be self-sufficient, and honestly believed that I could, until one day I couldn't. And that's when I learned the ins and outs of Social Security and the nightmare that applying for it is. I was one of the VERY fortunate ones that was awarded benefits on my first application, but I have heard too many horror stories of those that weren't.
I don't want to be a fear monger, but the sad truth is that many many adults with CF will need SSDI at some point in their life, whether it be sooner, or later. I'm hoping it's later, but the point is this is an issue that will eventually effect many, if not most of us. I don't want to have to see people get so sick that it's too late for them to ANY quality of life left. Literally working yourself to death to pay for meds/keep insurance should not ever be a reality for any of us in the USA. As others have said, whether it be SSDI, or some other form of safety net, something needs to bridge the gap and be there for us to fall back on.
I also agree that separate to the SSDI issues, the cost of meds and copays is outrageous. I feel like I was destined to live month-to-month, paycheck to paycheck my entire life because I was born with a genetic disease. I guess you could say that I'm being all "woe is me", but I don't think that's fair. My husband makes a pretty good salary, but any excess money we do have is quickly eaten up by copays and medical bills. I know there are assistance programs in place, and I have them for a couple of my meds that have $100 month copays, however, my serevent and Qvar each have a $75/month copay, so that's another $150 a month just for those 2 alone. That's of course not counting my handful of others that have copays anywhere between $10 and $50 per month. And while this seems like a lot to me, there are MANY on this forum that have much higher copays than this. With that being said, I am just thankful that my husband makes decent money and we are able to afford all of my medication.
Well, I've gotten a little off track and am now sounding a little whiny, so I will end this here.
I replied on the other thread also about a plan going forward.Take Care!
Autumn 34 w/CF
Hey guys I know this is a sensitive topic and all of our situations are different which may result in differing opinions but let's still be respectful of one another's opinions and take a few minutes to think about your response in the heat of the moment before hitting send.
as patients and caregivers our experiences are different but we are ultimately on the same team despite differing opinions. No ones experience is less valid than another's so let's be mindful to not attack within the ranks and be snarky towards one another.
Thanks!
as patients and caregivers our experiences are different but we are ultimately on the same team despite differing opinions. No ones experience is less valid than another's so let's be mindful to not attack within the ranks and be snarky towards one another.
Thanks!
Just because I’m not in 100% agreement on the meting out of government funds does not mean we cannot be allies and friends in many other ways.
For my brother, what I was saying is that he was able to build a safe-net that caught him. He is a great example of a ‘no matter what I’ll survive” attitude. His experience showed me some of the holes in my safety net and I took what steps I could take to fill them. I wanted to share an experience that helped me prepare for the future, so other might be able to prepare also.
Lastly, on the planet I live (come visit anytime), there are limited resources. Our Government has limited resources, the CFF has limited resources, patients and advocates have limited resources. I prefer to see those limited resources go toward treatment development and accessibility (i.e. new drugs and cheaper ways to produce/distribute those drugs). I’ve been able to build a workable financial safety net so far, but I haven’t been able to keep my lungs from deteriorating without new technologies. Therefore, I feel like new technology is a more important half of the battle than new social programs (if we had enough resources I’d be all for fighting them both). For example, a new drug currently cost a couple billion to get to market. So the 3.3 billion royalty payment the CFF just received could be used to develop 1-2 breakout treatment for CF (or when partnered smartly 4-5 treatments). Or the CFF could use the $3.3B to give each CF patient ~$50k in social programs to alleviate the expenses of the disease. New treatments will improve the future for everyone currently with CF, everyone that will be born with CF and anyone who loves someone or will love someone with CF. Handing out those funds as social programs will help 1 generation for a couple of years. With the current resources, mark my vote for improving the future.
For my brother, what I was saying is that he was able to build a safe-net that caught him. He is a great example of a ‘no matter what I’ll survive” attitude. His experience showed me some of the holes in my safety net and I took what steps I could take to fill them. I wanted to share an experience that helped me prepare for the future, so other might be able to prepare also.
Lastly, on the planet I live (come visit anytime), there are limited resources. Our Government has limited resources, the CFF has limited resources, patients and advocates have limited resources. I prefer to see those limited resources go toward treatment development and accessibility (i.e. new drugs and cheaper ways to produce/distribute those drugs). I’ve been able to build a workable financial safety net so far, but I haven’t been able to keep my lungs from deteriorating without new technologies. Therefore, I feel like new technology is a more important half of the battle than new social programs (if we had enough resources I’d be all for fighting them both). For example, a new drug currently cost a couple billion to get to market. So the 3.3 billion royalty payment the CFF just received could be used to develop 1-2 breakout treatment for CF (or when partnered smartly 4-5 treatments). Or the CFF could use the $3.3B to give each CF patient ~$50k in social programs to alleviate the expenses of the disease. New treatments will improve the future for everyone currently with CF, everyone that will be born with CF and anyone who loves someone or will love someone with CF. Handing out those funds as social programs will help 1 generation for a couple of years. With the current resources, mark my vote for improving the future.
Autumn, first of all...that was an amazing post and a clear example. You're absolutely right. We need more advocacy and I do wonder what has happened so far with CFF's involvement on SSDI requirements. I didn't know that the SSA had proposed rules two years ago that would have made it more difficult to access SSDI an it would be good to know what happened. CFF is the strongest, most powerful lobby we have and as hard as they have fought, I'm astonished that CF patients have to endure the rigors of SSDI application, some dying, during the waiting process. It's an outrage. That alone, seems to be a death panel. That and affordability.
Beyond that, you demonstrated the most important issue. That at some point, we all will need access to SSDI. No one wants to go on the dole. We all want to be self-sufficient. But that's tough with insurance and medical expenses. Right now, I'm in relatively good shape but I know at some point, I will have to go there, just as you. And what if you lost your job or was not married? What then? Fortunately, you have a wonderful, supportive husband to assist and even with that, it's a financial challenge. But what about other patients who make themselves sicker to qualify or lose their jobs? That should never be the case.
As always, we are all saddened to hear that one of our friends has passed from Cystic Fibrosis. It's like a punch in the gut. But we all are super charged to work even harder to raise money for treatments and a cure. Yet when CF patients die from waiting for SSDI access, among other things, we advocate with great challenges but have limited results. Cystic Fibrosis is a complex disease and the treatments are equally complex and unique. Yet when it comes to advocacy, there are barriers and impossibilities that squelch our hopes. It would seem that strong legislation and lobby would be the remedy. We certainly have the resources for it.
Look at Ethan, for example. His brother worked it out and he used that template for himself. That's great and I applaud them both. Ethan, I do agree with your statement that our government, the CFF, patients and advocates have limited resources and that those limited resources should go to research. If research creates a drugs that costs upwards of $300,000/year, there is no amount of money that can save all CF patients. I agree. Resources should be allocated to surviving life beyond the disease and CFF is actually pushing toward that. And I agree that not all the $3.3 billion, from the sale of Kalydeco royalties should ALL go exclusively to research. Just 1% could be used to lobby for better SSDI access or set up an employment resource so patients can have a safety net. Accessibility and affordability. THAT is the safety net, should all else fail. No CF patient should suffer beyond the disease, should they lose their job or have some financial issue or some other misfortune.
Ultimately, that is really the point. A safety net for all patients. Autumn spoke with such clarity about her situation and it shows how serious it is for us all. And Autumn, just know that you're not fear mongering or whining. I applaud you for pointing out the obvious problems we all face. It's the 800 pound guerilla in the room. Yet it seems that sometimes we all have to parse our words and tip toe around certain phrases and subjects like the qualification of "disability", for example. And there are some well intended folks who feel like their solution will work for everyone else, but we are all unique to some degree.
Here's how I see it and please sit me down and straighten me out. We're all scattered in the wilderness to fend for ourselves with some assistance from CFF/PARC. Nobody expects CFF/PARC to solve all our problems. But right now, CFF is the most powerful advocate we have and they are working on many of these issues we've discussed. They know that 50% of all CF patients are above the age of 18. It's a growing problem and a very good problem to have, with respect to the disease. We're living longer. And I'm quite sure that there are many war-weary patients/families that have fought the battle for years so the prospect of yet another bright idea that may not resonate, yet the storm looms for us all. And here I sit, beating my head against the wall, figurative speaking. See, I'm the preverbal child in the room, seemly being told "what for", by some, when I simply ask "why not?" We've all been challenged by those brick walls in life. I just need to know why those walls exist. What are the politics? What is the policy? No CF patient should suffer and die for any reason.
Although I have CF, I'm admittedly naïve about some things but I did raise a family member with CF and they never made it past their teens. Perhaps I'm not as eloquent as some have suggested but I will try harder. I just want folks to know that what Autumn speaks is a perfect example of why we all should have this conversation with each other and with CFF/PARC. There is fortune and misfortune in any situation and everyone is unique. Should any patient have misfortune, we should all fight hard to protect them/us with that safety net. Because one day, we too may have similar misfortune. We too will need that safety net. No matter what, we are all on the precipice.
And as an addition to this, it seems that the SSDI argument is probably mute. Now it's claimed that the trust fund that pays for Social Security disability benefits is set to start running dry by late 2016. Darn.
Randford, 50 something w/CF
Beyond that, you demonstrated the most important issue. That at some point, we all will need access to SSDI. No one wants to go on the dole. We all want to be self-sufficient. But that's tough with insurance and medical expenses. Right now, I'm in relatively good shape but I know at some point, I will have to go there, just as you. And what if you lost your job or was not married? What then? Fortunately, you have a wonderful, supportive husband to assist and even with that, it's a financial challenge. But what about other patients who make themselves sicker to qualify or lose their jobs? That should never be the case.
As always, we are all saddened to hear that one of our friends has passed from Cystic Fibrosis. It's like a punch in the gut. But we all are super charged to work even harder to raise money for treatments and a cure. Yet when CF patients die from waiting for SSDI access, among other things, we advocate with great challenges but have limited results. Cystic Fibrosis is a complex disease and the treatments are equally complex and unique. Yet when it comes to advocacy, there are barriers and impossibilities that squelch our hopes. It would seem that strong legislation and lobby would be the remedy. We certainly have the resources for it.
Look at Ethan, for example. His brother worked it out and he used that template for himself. That's great and I applaud them both. Ethan, I do agree with your statement that our government, the CFF, patients and advocates have limited resources and that those limited resources should go to research. If research creates a drugs that costs upwards of $300,000/year, there is no amount of money that can save all CF patients. I agree. Resources should be allocated to surviving life beyond the disease and CFF is actually pushing toward that. And I agree that not all the $3.3 billion, from the sale of Kalydeco royalties should ALL go exclusively to research. Just 1% could be used to lobby for better SSDI access or set up an employment resource so patients can have a safety net. Accessibility and affordability. THAT is the safety net, should all else fail. No CF patient should suffer beyond the disease, should they lose their job or have some financial issue or some other misfortune.
Ultimately, that is really the point. A safety net for all patients. Autumn spoke with such clarity about her situation and it shows how serious it is for us all. And Autumn, just know that you're not fear mongering or whining. I applaud you for pointing out the obvious problems we all face. It's the 800 pound guerilla in the room. Yet it seems that sometimes we all have to parse our words and tip toe around certain phrases and subjects like the qualification of "disability", for example. And there are some well intended folks who feel like their solution will work for everyone else, but we are all unique to some degree.
Here's how I see it and please sit me down and straighten me out. We're all scattered in the wilderness to fend for ourselves with some assistance from CFF/PARC. Nobody expects CFF/PARC to solve all our problems. But right now, CFF is the most powerful advocate we have and they are working on many of these issues we've discussed. They know that 50% of all CF patients are above the age of 18. It's a growing problem and a very good problem to have, with respect to the disease. We're living longer. And I'm quite sure that there are many war-weary patients/families that have fought the battle for years so the prospect of yet another bright idea that may not resonate, yet the storm looms for us all. And here I sit, beating my head against the wall, figurative speaking. See, I'm the preverbal child in the room, seemly being told "what for", by some, when I simply ask "why not?" We've all been challenged by those brick walls in life. I just need to know why those walls exist. What are the politics? What is the policy? No CF patient should suffer and die for any reason.
Although I have CF, I'm admittedly naïve about some things but I did raise a family member with CF and they never made it past their teens. Perhaps I'm not as eloquent as some have suggested but I will try harder. I just want folks to know that what Autumn speaks is a perfect example of why we all should have this conversation with each other and with CFF/PARC. There is fortune and misfortune in any situation and everyone is unique. Should any patient have misfortune, we should all fight hard to protect them/us with that safety net. Because one day, we too may have similar misfortune. We too will need that safety net. No matter what, we are all on the precipice.
And as an addition to this, it seems that the SSDI argument is probably mute. Now it's claimed that the trust fund that pays for Social Security disability benefits is set to start running dry by late 2016. Darn.
Randford, 50 something w/CF
Randford, I'd like to clarify that I am behind these efforts 100 percent. I, and many others in the CF community took action to try to stop the changes the SSA proposed almost 2 years ago to make getting SSDI even more difficult than it currently is. I have yet to hear if these changes were adopted. The CFF was very involved in the fight against it, so I do believe they are listening to us and understand our plight. That, however, does not mean that I believe there isn't room for more advocacy on our behalf.
I also think that you are right, that until a person needs it, it's kind of like "eh". When I graduated from college I honestly thought I was going to work and support myself for many years, I had never thought much about SSD at all. CF had different plans with exacerbation after exacerbation after exacerbation. I ended up applying for SSDI FAR before I ever thought I would need it, and it was one of the darkest times of my life. I learned all about the application process and the "impairment listings" etc. Things I previously had no clue about. I don't think the average CFer does. Another thing that is sad about the process is that although often times a CFer will CLEARLY meet the impairment listing and show that they are disabled by Social Security's standards, they will be denied the first time they apply. It's all part of a weeding out, and they hope that you will give up and go away because it is exhausting.
Another fact about Social Security, is that after one is awarded benefits and deemed "disabled", there is 24 month waiting period before Medicare coverage begins. Sadly, I have heard of more than one CFer die long before their Medicare benefit even kicks in.
Before going on disability I was like most every adult with CF who wanted to do it all and be self-sufficient, and honestly believed that I could, until one day I couldn't. And that's when I learned the ins and outs of Social Security and the nightmare that applying for it is. I was one of the VERY fortunate ones that was awarded benefits on my first application, but I have heard too many horror stories of those that weren't.
I don't want to be a fear monger, but the sad truth is that many many adults with CF will need SSDI at some point in their life, whether it be sooner, or later. I'm hoping it's later, but the point is this is an issue that will eventually effect many, if not most of us. I don't want to have to see people get so sick that it's too late for them to ANY quality of life left. Literally working yourself to death to pay for meds/keep insurance should not ever be a reality for any of us in the USA. As others have said, whether it be SSDI, or some other form of safety net, something needs to bridge the gap and be there for us to fall back on.
I also agree that separate to the SSDI issues, the cost of meds and copays is outrageous. I feel like I was destined to live month-to-month, paycheck to paycheck my entire life because I was born with a genetic disease. I guess you could say that I'm being all "woe is me", but I don't think that's fair. My husband makes a pretty good salary, but any excess money we do have is quickly eaten up by copays and medical bills. I know there are assistance programs in place, and I have them for a couple of my meds that have $100 month copays, however, my serevent and Qvar each have a $75/month copay, so that's another $150 a month just for those 2 alone. That's of course not counting my handful of others that have copays anywhere between $10 and $50 per month. And while this seems like a lot to me, there are MANY on this forum that have much higher copays than this. With that being said, I am just thankful that my husband makes decent money and we are able to afford all of my medication.
Well, I've gotten a little off track and am now sounding a little whiny, so I will end this here.
Take Care!
Autumn 34 w/CF
With ds it's primarily his prescriptions. 3 months of creon is $7000, Tobi (generic) is about $5000, pulmozyme was $2900. I didn't think his annual lung scan at $1400 was all that bad. Heck, I was more shocked last month with his well child vaccinations -- 4 shots were $920.
We recently switched to a high deductible plan and a HSA (health savings account). Once ds hits $2600, everything is supposed to be covered.
We recently switched to a high deductible plan and a HSA (health savings account). Once ds hits $2600, everything is supposed to be covered.
Ratatosk, I concur on those expenses. And I think HSA's are the ticket. I hope that works out for you. Please let me know. I'm seriously thinking about an HSA. Better your money than an insurance carrier, right? Just think about it. You pay for an individual plan, say $7K/year, just for the "privilege" of meeting a $5K deductible before being fully covered. Still, you're subjected to additional OOP expenses. Let's hope there are, at the very least, amendments to ACA. Personally, I they should rip it out, root and branch and start over. But, I serious doubt that will ever happen.
Ethan, I agree. It's really tough to rally all of us but we can at least speak to advocacy groups that support certain issues. And yes, I do hope we carefully move forward to protect patients from financial issues brought on by the health care mess and it's a mess.
And perhaps automatic SSDI qualification is completely unrealistic. Nobody wants a direct handout. But an ease of qualifications would be a very good thing, if all else fails. If people give up on the SSDI process or even die while waiting, then clearly something's terribly wrong.
And perhaps automatic SSDI qualification is completely unrealistic. Nobody wants a direct handout. But an ease of qualifications would be a very good thing, if all else fails. If people give up on the SSDI process or even die while waiting, then clearly something's terribly wrong.