The Other Half of the Battle

randford

New member
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
 
Oh my! You are so very smart and all that you said is true. It makes me want to cry. I don't want him to get sick and need disability and it does seem that even with the Disability Act that it is not designed for people with CF as you can only get on disability if you are close to a transplant for a person with CF. How then do people afford to live? What do you say if you have to go to the hospital? The top people find out because they are entitled to look at who is using the most insurance. Then they know you have a major medical condition even if they don't know the specifics. I have been worried about all that you posted for a long time. Its enough to have to battle for your life but it's everything else too.
 
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randford

New member
It breaks my heart to read your reply. I feel your concern. Know that I'm not so smart. I just live it and worry about it, just as other aging CF patients have and will as treatments allow us to live longer. I'm frustrated that either no one is listening, CFF included or perhaps what I'm saying simply doesn't resonate. Yes, I've pitched this to CFF and they appear to be working on "something" but for God's sake, tell us what it is. All we get are crickets.

Not every patient has a network of friends and family to fall back on. Ultimately, we have to find some way to address these issues and help ourselves. How do you tell your son that he's unemployable...that he's a pariah to be discriminated against. You've pushed your whole life to get him where he is. CFF and other organizations have really worked hard to bring us all that far...only to be discriminated against as adults. There is no compassion among employers or the government for that matter. They don't understand CF or care. Yet, we're human and want to be productive, normal members of society. So the mantra should be from this point forward, "Save the 26+" or some variation. We matter too. But we need to start shouting it.

Isn't it amazing that as complex as Cystic Fibrosis is and certainly the cure and treatment, you'd think that we all could collectively solve the other half of the battle.
 

randford

New member
And by the way, I think that perhaps one solution would be to devise a work from home program for all CF patients who need opportunities. Consider the number of CF patients per state (see source below). Given any state, there could be multiple companies, who contribute to the cure of Cystic Fibrosis that could also offer employment opportunities. Of course as patients, we're all responsible for our own insurance, but that's pretty much a given now with just about everyone. So there's no downside to the employer and there is great benefit to CF patients who participate. All we need is a computer and a phone. We can work part time or full time. And by working with companies that support a cure for CF, we’re not subjected to fly-by-night “work from home” scams.

So Income is earned and we're not exposed to health hazards in an office environment. We can be productive and perform our treatments at home without embarrassment and scrutiny, to stay relatively healthy. And if we need medical care, we’re allow time to recover without fear of termination. Seems simple, right?

Any CF-related organization like this forum or CFF could participate as the go-to source for employment. We just need to encourage CF organizations to consider it, organize it and implement it. I welcome your feedback.

Source, page 28: http://www.cff.org/UploadedFiles/re...tRegistryReport/2012-CFF-Patient-Registry.pdf
 
Yes, I know. I have felt for a long time that the CFF is not doing enough. I do not know how to get anything done by myself. I am willing to go in and do whatever it takes but I do not know how to even do that. I know the law is not perfect but if he had not had it, we would have been in trouble when he turned 23. I know what a predicament being an adult with CF is as I have thought about all the laws and I know how the world is. When you are a child the world looks at you like you count but when you are an adult it is different. There is no empathy.
 
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ladybird

New member
CF Adults face many issues and I am thankful to you for addressing the financial and employment side. Many people are not aware of the differences between states in terms of treatment of the disabled. For example, California has short term disability insurance that will pay you 50% of your salary for up to one year and it is easy to qualify for. I think New York offers the same, but no other states do. That leaves the majority of CF patients who lack insurer-provided disability insurance out in the cold.

I live in California and have really benefited from the short term disability system, and also the fact that in CA, you can get unemployment insurance even if you were a part time worker, which many CF people are. For young people considering relocating, I would really look into the laws and policies of the state you are intending to move to. It is also really important to work for a company that offers private disability insurance. As a CF patient, private disability insurance is more important than salary as you will probably need it sooner than later. Unfortunately most states are not as compassionate as California and do not have benefits to protect part time workers and the disabled. Another reason why it is so important to vote and be politically active in supporting liberals in your state, and organizations such as moveon.org which promote worker rights and higher wages. If everyone just signed a few online petitions a year and voted and got a couple of their friends to vote, we could make a difference.
 
Okay, I looked up that website but it is just a patient registry. I guess I don't know what I should do with it but idk if I really want them to know everything about my son.? Is there something I can do to petition for rights for people with CF or do you know how to correlate that and what to do?
 

randford

New member
Believing... It was on page 28 and just shows the number of people per state. Honestly, I'm not sure how to proceed. I just pitched it to ideas@cff.org. It seems so simple but I'm sure there are caveats. I'll look into it further. For the moment, I'm just speaking off the cuff, with respect to solutions but it seems so simple and doable. All I can say is pitch the work-from-home idea to others and get feedback. See how people feel, then hammer the CFF ideas email in hopes that we might champion resources to make it happen. I'm with you. I'll do what it takes.
 

randford

New member
I'm just concerned that his employer may see a spike in employee premiums, due to his treatment and he might be discovered. Let's hope not.
 
Okay. I will look at Page 28 but I will have to go over that tomorrow as I had to go to the store and I need to call Southwest as I need to change my airline flight. I am going to go visit my son the latter part of next week and I am so excited. I really don't know how to get the work from home thing started for others with CF and through what organization? The Boomer Easiason Foundation? I really don't even know where to start. I'll get back with you tomorrow. Thanks for your enthusiasm and willingness to help! I doubt I can succeed at accomplishing anything though but I'm willing to try.
 
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I just saw your last post. Yes, I know they will see a spike. I already found out that that is what is going to happen. It scares me deeply. We are willing to help our son pay his insurance premiums if he needs to get on through the Affordable Care Act insurance. We don't have a lot financial-wise but life means nothing without my son and we are willing to do anything we have to. I appreciate your help.
 

static

New member
As far as insurance is concerned, I am one of the lucky ones. My parents have good health coverage through their work and I am covered under their plan due to a permanent disability clause that needs to be filled out every 3 years. If I remember correctly, anyone with CF can qualify but I will leave it up to others to explain it further, otherwise I can probably find out tomorrow if enough people are interested.

I totally understand as far as employment is concerned though. I went through DoR a few years ago to land the job I have now and I really love it. I work part time at a mental health agency and the feeling of helping others through their struggles has really given me purpose to continue fighting mine. However, it isn't easy for either side, employers or employee. The employer has to look out for what is best for the company/non-profit/whatever and no matter how you slice it, having someone with CF on the team is more challenging than someone "normal". It requires more accommodations, more work flexibility, and at times even more staffing to make up for when you are out. Despite excellent direct support, I've heard co-workers and even bosses ask why I was still employed after being out for 2-3 week hospital stays.
In my case, if they really wanted to let me go it wouldn't be that hard. I, like many people, am "Employed at Will", which means employers don't have to give you a reason to let you go. Due to the sacrifices they are making employing me I have to make some sacrifices as well, one of which is using my PTO for hospital stays and only working part time (although to be fair I've never asked for, or even wanted full time because I don't think I could handle it and stay healthy). My monthly income is also only slightly above what people get on disability, but I still do it, and enjoy it.

Why? For me it goes back to purpose. I want to actually be fighting for something, not just to stay alive. In that sense, I can definitely relate to the original poster. I do however strongly disagree with the judgmental tone towards those who are forced into disability. Having CF doesn't automatically make you an expert on what qualifies to be "social pariahs" and what doesn't, CF is a very complicated disease and can take varying tolls on both the physical and mental state. Doing treatments for 8 hours could be their full time job, and while I understand the context of insurance discussion it was meant to be taken in, it can still be very hurtful to those who are on disability. It is also important to realize that money comes with stipulations, so while "healthy" CF'ers have to worry about employment/insurance/exc., those on disability have to worry about not going over their income/spending limit and basically living at poverty level for the rest of their life.

Edit: After re-reading your post I better understand the point you were trying to make. A strong social network facilitating all of the needs of the CF community (education,employment, disability) would be a great addition to the foundation, but until that happens maybe posting resources available to us right now will be a good start?
 
Dear Static: I am definitely interested in finding out about the permanent disability clause on your parents insurance and all the details of it! I never heard of it. I feel for everyone that has to deal with this disease and I know how Randford feels too and I know he meant nothing by it. Does that mean he would be disqualified from the clause you are talking about? Please give me more information on it if you can. Thank you so very much!
 
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Randford: I am still interested in doing whatever you tell me to even if Static gets information and my son qualifies to be on our insurance through a permanent disability clause. He probably doesn't qualify though as he is not disabled. I know he falls in the category you talked about even if we managed insurance as he wants to keep CF private and he loves his job which means so much to him. I looked up page 28 this morning and I guess I could have done that last night as there wasn't much to it - lol!:eek: 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.

I wonder if there is a way to get the Social Security Administration to change their laws on CF. I sent you to PMs last night but I don't think either one went through.:eek: If there was a way to get them to review their policies on CF as what I heard a long time ago is that your lung function has to be almost transplant level to be on disability. The reason I am looking at this now is so my son would qualify for insurance through Medicaid or Medicare or whatever it is as he falls in the category where if the insurance we get does not cover his expensive medicines and care - we don't have a back-up plan and I don't know what to do. We don't make enough money to cover the "real" cost of his medicines before insurance. I don't know how it is ethical to let a person with good lung function have to skip their medicines because they can't afford them and let their health decline to the point of transplant to qualify to get on the states insurance program. CF is like cancer. People think you are healthy because you appear healthy.
 

kyeev

New member
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.

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

Great post Randford.
One (slightly tongue in cheek) solution is to leave the Good Ol' USA.
We are very lucky over here in Europe to be able to work and have all our healthcare covered by the state.
Reading your post, really makes me appreciate how lucky we are over here.

I've had a 20 year career in the Sciences and it just wouldn't have been possible if I lived in the US.
In fact I've travelled all over the world and the the USA is one of the few countries I haven't worked in, specifically because of the healthcare situation.
 

randford

New member
"Static"...In reference to CF patients being "social pariahs", I completely understand the rigors of managing the disease day to day. I live it as you do. With all due respect I meant it within the context of how we are perceived by employers and employees. And you are correct. Employers look out for what is best for them. Profit is the bottom line. Given the atmosphere of health insurance costs and the discrimination we face, we are in fact considered a liability. And perhaps "liability" is a better word. So in that context alone, many CF patients have to hide their disease and even lie to remain employed. In addition, many people are ignorant about CF. So given the basic definition of pariah, in an office environment of uninformed employees and suspicious managers concerned with liability, unfortunately the term fits. But I don't want to digress into semantics and I completely understand.

You make a very good point. For protection from ubiquitous discrimination, you've been most wise to have a permanent disability clause in your contract. And thank you for sharing that. Given the accommodations to CF patients at work, as you describe, you are spot on that a clause like that is needed. When your own managers and coworkers question why you remain employed after so much time out of work, it is obvious that we all need protection from such bias, scrutiny and discrimination. And that dovetails back to my original post. We all as CF patients need employment and need protection to remain employed to survive.

Just think about it. You get a job, if you’re lucky and you get insurance…if you’re lucky. But the job makes you sick from exposure to other employees and you have to take time off to recuperate, causing managers and employees to scrutinize you. Eventually, you lose your job and your insurance and you’re right back where you started. “Right to work”, as you indicate. They can fire you for anything.

That's why I've proposed a work-from-home program for CF patients, able to participate. A program supported by the CF foundation, perhaps. With companies, offering opportunities, that are associated with the foundation, and have contributed to the cause. The idea might be fanciful. But we have to attempt solutions so that we are all protected. Read believingjesus' posts and her concerns. It resonates with us all.

Further, we all need to contact our congressmen in each state and rally those who support CF with strong contacts to government. We should also contact the ideas and policies emails at CFF. You can find them on the contact page. believingjesus' is correct. We need to change the social security laws and even disability laws to help all CF patients. Not all meet the rigorous criteria and would have to get sick to qualify. That hardly seems fair. And as Kalydeco improves function, it disqualifies patients from disability. But affordability is key. $300,000 a year for Kalydeco is the difference between life and death.
 

randford

New member
This is why we need to rally the CFF. They have the power, money and connects to make this happen. Somehow, all CF patients and families need to rally to make this happen. If we don't make these changes, people will suffer. Your son, nor any other CF patient should suffer due to archaic laws. I say we all start reaching out to CFF individually, for starters. There are other ways to consolidate the message and to be fair, the CFF may be working on things but it sure would be nice to know what. I would hate to think that once you turn 26, you're cast aside and no longer have value. I can't believe that CFF would ever think that way.
Randford: I am still interested in doing whatever you tell me to even if Static gets information and my son qualifies to be on our insurance through a permanent disability clause. He probably doesn't qualify though as he is not disabled. I know he falls in the category you talked about even if we managed insurance as he wants to keep CF private and he loves his job which means so much to him. I looked up page 28 this morning and I guess I could have done that last night as there wasn't much to it - lol!:eek: 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.

I wonder if there is a way to get the Social Security Administration to change their laws on CF. I sent you to PMs last night but I don't think either one went through.:eek: If there was a way to get them to review their policies on CF as what I heard a long time ago is that your lung function has to be almost transplant level to be on disability. The reason I am looking at this now is so my son would qualify for insurance through Medicaid or Medicare or whatever it is as he falls in the category where if the insurance we get does not cover his expensive medicines and care - we don't have a back-up plan and I don't know what to do. We don't make enough money to cover the "real" cost of his medicines before insurance. I don't know how it is ethical to let a person with good lung function have to skip their medicines because they can't afford them and let their health decline to the point of transplant to qualify to get on the states insurance program. CF is like cancer. People think you are healthy because you appear healthy.
 

randford

New member
We have a long way to go "kyeev". Hopefully, we'll get there.
Great post Randford.
One (slightly tongue in cheek) solution is to leave the Good Ol' USA.
We are very lucky over here in Europe to be able to work and have all our healthcare covered by the state.
Reading your post, really makes me appreciate how lucky we are over here.

I've had a 20 year career in the Sciences and it just wouldn't have been possible if I lived in the US.
In fact I've travelled all over the world and the the USA is one of the few countries I haven't worked in, specifically because of the healthcare situation.
 

randford

New member
"believingjesus", as well intended as the "work-from-home" idea might be, it still doesn't address overall affordability. Given the average cost of Kalydeco for your son, no modest job with insurance would cover $300,000/year, hence why my idea is fundamentally flawed. So you're correct. Changing the laws is what is key. I'm naively seeking answers and circumstances are most complex. However, it starts with our CF and government representatives. We have to garner their attention collectively. And lets hope CFF is offering solutions. We should all inquire about that with CFF.
Randford: I am still interested in doing whatever you tell me to even if Static gets information and my son qualifies to be on our insurance through a permanent disability clause. He probably doesn't qualify though as he is not disabled. I know he falls in the category you talked about even if we managed insurance as he wants to keep CF private and he loves his job which means so much to him. I looked up page 28 this morning and I guess I could have done that last night as there wasn't much to it - lol!:eek: 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.

I wonder if there is a way to get the Social Security Administration to change their laws on CF. I sent you to PMs last night but I don't think either one went through.:eek: If there was a way to get them to review their policies on CF as what I heard a long time ago is that your lung function has to be almost transplant level to be on disability. The reason I am looking at this now is so my son would qualify for insurance through Medicaid or Medicare or whatever it is as he falls in the category where if the insurance we get does not cover his expensive medicines and care - we don't have a back-up plan and I don't know what to do. We don't make enough money to cover the "real" cost of his medicines before insurance. I don't know how it is ethical to let a person with good lung function have to skip their medicines because they can't afford them and let their health decline to the point of transplant to qualify to get on the states insurance program. CF is like cancer. People think you are healthy because you appear healthy.
 
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