The ultimate battle is surviving CF. No doubt. Then there is other half of the battle. Insurability, Affordability, Employability, something Cystic Fibrosis adults worry about every single day. Yes, we’re living longer but that’s only half the battle.
There are amazing treatments like Kalydeco, thanks to the Cystic Fibrosis Foundation and other organizations so some of us are well enough to work but essentially unemployable and uninsurable. Many of us don’t qualify for disability and we don’t want to burden family and society. What do we do? Who can we turn to?
At age 26 you're no longer on your parent's insurance and even if you’re able, it’s tough to get a job. But you're not sick enough to qualify for SSDI so you can't afford treatments and assistance, until you get sick, go broke or both. So if you don't have a job or lose your job, you can't afford health insurance and the CFPAF doesn't apply. If you can't afford insurance, you forgo treatments and clinic visits, causing your health to decline, but not so much that your qualify for disability, therefore SSDI doesn't apply. And if treatments and clinic visits are skipped, overall clinic patient performance statistics drop and directly affect CF Foundation dollars to clinics.
So does it make since for CF adults to make themselves sick enough and poor enough to qualify for SSDI, Medicaid or other assistance? It seems that getting sicker solves all problems for everyone but CF adults, in this position. The scenario boxes us in. Sounds a whole lot like a death panel. After all, it's not a panel of people that determine our fate, it's simply affordability, insurability and even employability.
Seem employment takes care of insurability and affordability, right? But there are all sorts of pitfalls with employment. Many of us have to hide our CF in the shadows until it catches up to us, me included. Yes, we have HIPA, GINA and FMLA, etc., but employers have ways of finding out our plight, ie, social media, etc. And yes, staffing agencies and employers scrub such information. So all those well-intended parents, posting years of progress of their CF children, have unwittingly exposed them to scrutiny, once they are old enough and able enough to work. But wait, we have SSDI, right? But we practically have to bleed from every orifice and see a tunnel of white light to qualify…and that’s a big "if". Adding to the misery, the new ACA employer mandate just kicked in on Jan. 1st. So companies with 50+ employees just cut employees to part time or even fired them to meet the 70% coverage mandate. Source: Obamacare mandate kicks in...
And speaking of health insurance, adult patients who fall between disability and insurability are steered by well intended case workers to assistance programs or the ACA, whether or not we qualify. And what a mess the ACA has become. No doubt treatments will be denied to CF adults, even children. Affordability is our death panel. Jonathan Gruber said it best. "The only way to control costs is to effectively deny treatment." Source: GRUBER: Obamacare WON'T Be Affordable...
Keep in mind, to qualify for an ACA subsidy, a single person needs to earn "between" $11670 and $46,680. Below $11670? No subsidy."Between" is the keyword So does a CF patient, with moderate disease expression, have to become destitute enough to qualify for Medicaid or other assistance or perhaps make themselves sick enough to qualify for SSDI? It seems cruel for CF adults who just want to be functional members of society. How ironic. There is such a push to help children survive CF and what a wonderful thing. But as adults, we’re basically on our own and subject to the same rules of life as those without CF. We're even tossed into general population, (non-CF'rs with pulmonary issues) at CF adult clinics.
So…what’s the solution? Even if 25-30% of CF adults could work, who will hire us? Is it possible to corral resources and partner CF patients with CF-friendly employers? Is that naive? We just want to work and try to live a seemingly normal life. And where is CFF on all this? No, they are not a staffing agency but they have a network and resources to assist. Either that or demand that legislation is crafted to consider automatic SSDI for all 30+K CF patients. Yeah, sure…good luck with that one right? As it is, we are simply boxed in.
Ultimately, CF adults want to earn it and not have it handed to us. It gives us great value to be productive members of society. As abnormal as we are by societal standards, we simply want to be normal, not pariahs. We just want to survive. And if survival of CF is the overall goal of CFF and other organizations, wouldn't it seem logical that survival of life is just as important as surviving the disease? After all, they both go hand in hand. What’s the point of saving us from this terrible disease if we can’t afford to survive it?
It breaks my heart to see other CF patients struggle and share their stories on this forum. I struggle along with them and I want to save them all. But there has to be an overall solution to this. As CF patients, we all have to look out for each other. What’s the answer? What’s the solution? Is CFF listening? Is your senator listening? Is anyone listening? CF’rs are crying out for help.
Randford 52, D-F508/P-140S
There are amazing treatments like Kalydeco, thanks to the Cystic Fibrosis Foundation and other organizations so some of us are well enough to work but essentially unemployable and uninsurable. Many of us don’t qualify for disability and we don’t want to burden family and society. What do we do? Who can we turn to?
At age 26 you're no longer on your parent's insurance and even if you’re able, it’s tough to get a job. But you're not sick enough to qualify for SSDI so you can't afford treatments and assistance, until you get sick, go broke or both. So if you don't have a job or lose your job, you can't afford health insurance and the CFPAF doesn't apply. If you can't afford insurance, you forgo treatments and clinic visits, causing your health to decline, but not so much that your qualify for disability, therefore SSDI doesn't apply. And if treatments and clinic visits are skipped, overall clinic patient performance statistics drop and directly affect CF Foundation dollars to clinics.
So does it make since for CF adults to make themselves sick enough and poor enough to qualify for SSDI, Medicaid or other assistance? It seems that getting sicker solves all problems for everyone but CF adults, in this position. The scenario boxes us in. Sounds a whole lot like a death panel. After all, it's not a panel of people that determine our fate, it's simply affordability, insurability and even employability.
Seem employment takes care of insurability and affordability, right? But there are all sorts of pitfalls with employment. Many of us have to hide our CF in the shadows until it catches up to us, me included. Yes, we have HIPA, GINA and FMLA, etc., but employers have ways of finding out our plight, ie, social media, etc. And yes, staffing agencies and employers scrub such information. So all those well-intended parents, posting years of progress of their CF children, have unwittingly exposed them to scrutiny, once they are old enough and able enough to work. But wait, we have SSDI, right? But we practically have to bleed from every orifice and see a tunnel of white light to qualify…and that’s a big "if". Adding to the misery, the new ACA employer mandate just kicked in on Jan. 1st. So companies with 50+ employees just cut employees to part time or even fired them to meet the 70% coverage mandate. Source: Obamacare mandate kicks in...
And speaking of health insurance, adult patients who fall between disability and insurability are steered by well intended case workers to assistance programs or the ACA, whether or not we qualify. And what a mess the ACA has become. No doubt treatments will be denied to CF adults, even children. Affordability is our death panel. Jonathan Gruber said it best. "The only way to control costs is to effectively deny treatment." Source: GRUBER: Obamacare WON'T Be Affordable...
Keep in mind, to qualify for an ACA subsidy, a single person needs to earn "between" $11670 and $46,680. Below $11670? No subsidy."Between" is the keyword So does a CF patient, with moderate disease expression, have to become destitute enough to qualify for Medicaid or other assistance or perhaps make themselves sick enough to qualify for SSDI? It seems cruel for CF adults who just want to be functional members of society. How ironic. There is such a push to help children survive CF and what a wonderful thing. But as adults, we’re basically on our own and subject to the same rules of life as those without CF. We're even tossed into general population, (non-CF'rs with pulmonary issues) at CF adult clinics.
So…what’s the solution? Even if 25-30% of CF adults could work, who will hire us? Is it possible to corral resources and partner CF patients with CF-friendly employers? Is that naive? We just want to work and try to live a seemingly normal life. And where is CFF on all this? No, they are not a staffing agency but they have a network and resources to assist. Either that or demand that legislation is crafted to consider automatic SSDI for all 30+K CF patients. Yeah, sure…good luck with that one right? As it is, we are simply boxed in.
Ultimately, CF adults want to earn it and not have it handed to us. It gives us great value to be productive members of society. As abnormal as we are by societal standards, we simply want to be normal, not pariahs. We just want to survive. And if survival of CF is the overall goal of CFF and other organizations, wouldn't it seem logical that survival of life is just as important as surviving the disease? After all, they both go hand in hand. What’s the point of saving us from this terrible disease if we can’t afford to survive it?
It breaks my heart to see other CF patients struggle and share their stories on this forum. I struggle along with them and I want to save them all. But there has to be an overall solution to this. As CF patients, we all have to look out for each other. What’s the answer? What’s the solution? Is CFF listening? Is your senator listening? Is anyone listening? CF’rs are crying out for help.
Randford 52, D-F508/P-140S
I saw there were different amounts of people with CF in different states. I do not know what to do with this though and I don't know where to start or how the both of us could start anything. If you have any ideas I am willing to do what I need to.