COSTS KILLS...slowly. Why it should be easier to qualify for SSDI.

[randford]

It's outrageous that CF patients can't immediately qualify for SSDI when others get it for nothing less than a hangnail. Then there's talk of a 2-year "Community College Initiative" that would cost $85 billion to taxpayers. Yet CF patients have to beg. Some of us don't meet those super critical requirements to qualify for SSDI, unless when make ourselves sick enough. In the interim, costs kills...slowly. Most of us have been there. If you're 26+, surviving life becomes as difficult as the surviving the disease.

Even as a CF patient, I'm blown away by the costs. What is a CF life worth? People argue that working is "not an issue" when we know how quickly employee insurance premiums spike when CF patients are hired. Or that we have to lie and hide, in fear of discovery and discrimination from employers. Or that "disable" or "disability" are ugly words. Or that CF patients shouldn't automatically be declared "disable", assisting with an easier qualifications for SSDI.

CFF can only do so much. PARC can only do so much. No CF patient wants a hand out. We want to work. But even if we're employed, consider affordability and the out of pocket costs, whether coverage is employer-based or individual ACA coverage. Certainly PARC and the pharmaceuticals kick in some cash to ease the burden (based on our household income) but even then, it's tough for adult patients and families. And if we make too much money the previous year we apply for PARC, SSDI, Medicaid, etc., we're denied.

Just look at the costs:

Kalydeco: $30,000/month - $300,000/year
Tobi: $6,000/month - $72,000/year
Cayston: $6,000/month - $72,000/year
Pulmozyme: $3000/month - $36,000/year
Creon: $1000/month - $12,000/year

And that doesn't consider other medications, treatments, copays, doctors visits and peripheral out of pocket costs.

So what is the answer? What is the best solution? I'm sure there will be some glib responses, based on individual circumstances but everyone has unique issues and there isn't always a one-size-fits-all solution. WE ALL need to lobby and petition our representatives to craft legislation, allowing adult CF patients easier access to SSDI, period. It's time. Make your voice heard. They are listening.

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[believingjesus]

I wonder how we can get the law changed to ease up on the restrictions to get disability so people with CF can spend time trying to do everything possible to avoid getting a low lung function and infections? It doesn't seem to me the CFF is going to do anything or they would have already. The future scares me but I know the future rarely goes like I plan so I need to enjoy the present time. With CF alienating others with CF getting together I really don't know how lobbying can be accomplished. I don't want to hinder others from telling their story to the CFF but if the CFF is really interested they should be reading these forums and listening as we are all saying the same thing. PARC will only help if u r low income and my son is not with the job he loves so much. I hate that I feel he will be discriminated against when he goes on the employers insurance as in his field u have to be healthy. I don't know a way around it all.

 

[randford]

Your son will most assuredly be discriminated against at some point. Yes, there are laws against direct discrimination. That's why employers find ways to circumvent the law and release employees to prevent lawsuits. In right-to-work states, it's a given. It can happen, it does happen and will continue to happen. That's why we need access to CF-friendly employers. I believe that only CFF has the resources to make that happen.

And it would be very simple and inexpensive to do. Just offer a page on the CFF/PARC page about employment. The employment page would offer each state, then on each respective state page, there would be links to companies and perhaps opportunities. How hard is that? At least we have a chance to work for someone, in-office or remote, without fear of discovery. It's all out in the open. They know, you know. It's no big deal. Health insurance is a caveat but if you're working, you can afford your own. And since ACA doesn't require disclosure of pre-existing conditions, CF adults can get covered. I only maintain that even a modest job won't solve all health care expense issues. SSDI would offer a cushion...not a hand out...a cushion.

As for changing the law to ease restrictions, CFF has the money, power and connections to make that happen. But as long as the collective number of CF patients and families remain silent, it's business as usual. We can't make people support this issue. If they care, they will. That doesn't mean answering this post. I don't care about that. Just call CFF. Let them know your stories. Tell them what you want. That's all. We can't expect CFF to carry all the water. We have a voice.

In the interim, CFF and PARC are moving in the direction of addressing CF lifestyles, beyond the treatment of CF. So that, at the very least, is promising.

I wonder how we can get the law changed to ease up on the restrictions to get disability so people with CF can spend time trying to do everything possible to avoid getting a low lung function and infections? It doesn't seem to me the CFF is going to do anything or they would have already. The future scares me but I know the future rarely goes like I plan so I need to enjoy the present time. With CF alienating others with CF getting together I really don't know how lobbying can be accomplished. I don't want to hinder others from telling their story to the CFF but if the CFF is really interested they should be reading these forums and listening as we are all saying the same thing. PARC will only help if u r low income and my son is not with the job he loves so much. I hate that I feel he will be discriminated against when he goes on the employers insurance as in his field u have to be healthy. I don't know a way around it all.

 

[believingjesus]

Okay. I will sit down again this week coming up and try to tell CFF our situation. I already wrote about Kalydeco and how the discrimination will start but it got no where. I honestly hope what you say is true, that the CFF will help to get the law changed but I am not an optimistic person. I really feel they should have worked on this way before now and got something done. I know that my son will be discriminated against. My son is positive but I see the charges to the insurance as we still pay the bills that insurance doesn't cover for him and will continue to do so to help him as we gave CF to him. I know the cost of cystic fibrosis and it is so tremendous. As I have stated before, Kalydeco is $300,000. I know many people will be discriminated against just for this one drug. All the people who think their $100,000 a year jobs are secure may have another thing coming. The real cost to have an employee with CF is far greater than just what they pay the employee to work there, that's why your idea of CF-friendly places to work is a good idea, but I doubt the foundation will do anything. If we get insurance through the marketplace when he turns 26 I have been told it is never as good as insurance offered through an employer plus he would not qualify for any subsidies because he was offered employer insurance and also because he makes too much. The cost of insurance through the marketplace is 4 times higher a month than the employer insurance. The plans I looked at for him were averaging $450 a month.

I do fear the future and I hate that. Sometimes it is just too much. I know I need to take it a day at a time and trust Jesus. This is a struggle but it is always because of fear.

 

[randford]

To put you at ease, no patient will ever be denied Kalydeco, no matter the circumstance. That comes from on high at CFF. They will find a way. It's what they do. But don't take my word for it. Seek answers with PARC and CFF.

Okay. I will sit down again this week coming up and try to tell CFF our situation. I already wrote about Kalydeco and how the discrimination will start but it got no where. I honestly hope what you say is true, that the CFF will help to get the law changed but I am not an optimistic person. I really feel they should have worked on this way before now and got something done. I know that my son will be discriminated against. My son is positive but I see the charges to the insurance as we still pay the bills that insurance doesn't cover for him and will continue to do so to help him as we gave CF to him. I know the cost of cystic fibrosis and it is so tremendous. As I have stated before, Kalydeco is $300,000. I know many people will be discriminated against just for this one drug. All the people who think their $100,000 a year jobs are secure may have another thing coming. The real cost to have an employee with CF is far greater than just what they pay the employee to work there, that's why your idea of CF-friendly places to work is a good idea, but I doubt the foundation will do anything. If we get insurance through the marketplace when he turns 26 I have been told it is never as good as insurance offered through an employer plus he would not qualify for any subsidies because he was offered employer insurance and also because he makes too much. The cost of insurance through the marketplace is 4 times higher a month than the employer insurance. The plans I looked at for him were averaging $450 a month.

I do fear the future and I hate that. Sometimes it is just too much. I know I need to take it a day at a time and trust Jesus. This is a struggle but it is always because of fear.

 

[believingjesus]

Randford: I understand that my son will not be denied Kalydeco. That is not a problem for me at all. When it is available for him we WILL get it no matter what. What is a concern for me is that the cost is so tremendous that with that charge being on my son's own insurance when he turns 26 or our insurance this year that it will cause the employer to discriminate even though not openly. It is $300,00 for each year. That coupled with all the other medicines that are so pricey - Tobi, pulmozyme, Creon or Ultrease, etc. - I do believe people will be discriminated against. I guess there is nothing I can do so I will sit back and wait like everyone else to see what happens and keep having my son jump hurdles. If anyone knows of something we can truly do - please let me know. I don't have faith in the CFF but if everyone else does then I hope they write in. I will still put in my 2 cents worth to them this week but I'm sure it won't go far as something could have been done by now.

 

[ethan508]

As far as discrimination goes, I definitely worry about it but have zero proof it exists. I've been employed with a corporation that is self-insured. In 7 year of employ we have had 9 rounds of layoffs (total of 60% of the work force). In all those layoffs, I've seen no correlation between health and those let go. I survived the layoffs as did other coworkers that had some major health costs (a guy on chemo, a guy whose new-born daughter had a major heart condition, a guy whose wife had been on cancer treatment for 10 years, etc.). I saw some guys with zero health issues walked out the door. So if a self-insured company isn't aware enough to get rid of the expensive health users, then I don't see the same problem with smaller employers who join insurance groups (especially now that the ACA has flattened some of the tier rating of groups).

For the marketplace insurance, $450 isn't too bad for an individual. When I was first married (i.e. no longer on my parents insurance), we made no money (like $15k/yr) and paid $400 per month for just my insurance, my wife's was another $80. The annual deductible was a $2000 and the copays were reasonable $20 or so. For the amount of my drug costs, I felt like it was a steal (I knew the insurance company wasn't making any money from me). Somehow we made it work without public assistance (basement apartment, very used cars, frugality in everything). My dad did worry about us being able to cover cost and offered to pay my premiums but I declined. It was time for me to be an adult and at least I could try my hardest first, before accepting assistance (it was one of the key stepping stones in my personal independence).

 

[randford]

There was indication of assistance with affordability but I can't speak for CFF. They want CF patient to live so I suspect they will do whatever it takes to help your son. I completely understand your worries. Although I'm not on Kalydeco, largely because my genetic combination is extremely rare, I do have other med/pharm expenses to deal with as well. But I have my own insurance and I contract, remote. Problem is, my employment status can always change so essentially, I'm on the bubble.

And even though our HR friend on this forum feels that the subject of discrimination is "fear mongering", discrimination happens. I mean no disrespect to that person. They have a unique situation and every situation is different. But it's easy to have staff reductions to include people without direct correlation between health and employment. It happens. I've seen it happen. I've even been affected by it. No one should be so myopic and naïve to think that people are not discriminated against. The route is never direct to avoid legal challenges.

If I were you, I'd definitely speak to PARC. They are really wonderful. If that doesn't help, contact your nearest CFF chapter and speak with the Executive Director. They pretty much know what's happening and can offer advice.

In the interim, we need to inquire with CFF about what the future holds for adult CF patients. Just because a certain situation works in certain circumstances, doesn't mean that it will work for everyone. And just because someone else has it all figured out and has their problems solved doesn't mean that everyone else does. That's why collectively, we should all support each other on this endeavor.

Randford: I understand that my son will not be denied Kalydeco. That is not a problem for me at all. When it is available for him we WILL get it no matter what. What is a concern for me is that the cost is so tremendous that with that charge being on my son's own insurance when he turns 26 or our insurance this year that it will cause the employer to discriminate even though not openly. It is $300,00 for each year. That coupled with all the other medicines that are so pricey - Tobi, pulmozyme, Creon or Ultrease, etc. - I do believe people will be discriminated against. I guess there is nothing I can do so I will sit back and wait like everyone else to see what happens and keep having my son jump hurdles. If anyone knows of something we can truly do - please let me know. I don't have faith in the CFF but if everyone else does then I hope they write in. I will still put in my 2 cents worth to them this week but I'm sure it won't go far as something could have been done by now.