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I agree with you, Believing. I would hope they might waive the 24 month Medicare waiting period at the very least. And they should go further to ease the qualifications for SSDI. People also shouldn't have to apply, wait six month, get denied, then reapply. That happens to all applicants. In...

I feel exactly the same as you, Ethan. You have a great deal of pride as I do. There is no doubt this country is stressed to the max with social programs and giveaways to those who have not earned those entitlements. Currently we sit on a bubble of $17 trillion in debt so we all know where it's...

Yes, Ethan is correct and I'm glad he brought it to our attention. Kudos, Ethan. Thanks! No need to apologize, Autumn. It was a legitimate quote. I might ask our friend Mike about his situation. Heck, I'm learning as we go!! ;-)

Thanks, Ethan. That's very good to know. Autumn and I were going on the post of Mike Amend who has diabetes, while raising a child with CF. Not sure whether he is a member here but appears to be on FB. He made mention of diabetes as a disability. I'm astonished. "Some allies"? With all due...

No worries. At least folks are discussing the subject! It would be great for CF patients and families to continue the conversation and share with CFF. I encouraged it by offering the link from the Facebook page, as well as the email address to send it. And for those reading this, please send it...

In fairness, don't take my word for it. The comment from PARC could be arbitrary. Perhaps they meant that they'd do anything they can to provide assistance and I just understood it wrong. But that's what one rep said to me. You folks no best!

No worries. Please contact PARC the Patient Assistance Resource Center (PARC) at 1-888-315-4154 Monday through Friday from 8:30 a.m. until 5:30 p.m. ET or by email at parc@cff.org. They assured me that no matter what, no patient will ever go without Kalydeco. Randford, 52 w/CF

Autumn, I found the Facebook post! I'm a little slow but hey, this is great! ;-) Over a thousand likes, over 200 comments and shares! https://www.facebook.com/knowcf/posts/10153145784473777 I sent the FB post to CFF and encouraged them to review it and perhaps forward it to Bob Bell. Let's...

Autumn and Ethan, I also agree with a letter to congress as well as mobilizing CFF and the CF community. I'm on the fence about "Compassionate Allowance". I agree that we all want to work and don't want an automatic hand out. But should less fortunate CF patients be denied? Wouldn't it simply be...

Wow Autumn, you just made my day! I didn't know that it could be posted on FB and I'm following the CysticFibrosis.com page but where do I find the post? I will try to find it. Thanks. Anyway, I agree with Mike Amend's post and so many others in different threads. A declaration of disability is...

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...

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...

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...

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...

Ethan, you bring up some very good points. It's good that you work for a larger employer and I see the benefit of your brother's company, with respect to the ACA higher risk tier. That may save the jobs of those with CF, cancer and other conditions. But as you said, those "Health Living"...

Been there, Ethan. And given that you have two brothers w/CF, I completely understand. At some point, you gotta let it go. The stress alone will create more health problems, the very thing you fear. Then it becomes a self-fulfilling prophecy. Yes, we all have to fight this battle and right now...

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...

Of course not. What company wants a lawsuit? You're the resident HR expert but it's been my experience, through observation that there are plenty of ways, over a period of time, to release someone, for a variety of performance issues. Even more so in a "right to work" state. Certainly a larger...

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.

First of all, it depends on the group coverage plan. The way it works (for now) is that an employer selects a group health insurance plan and then invite employees to enroll. Typically, employers cover at least 50% of each employee's monthly premium, and can also contribute to dependent...