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I've been schooled recently and I hear on good word that the way the SSA respiratory regulations are about as good as they're ever going to get, with respect to SSDI requirements. It's said that summertime would bring an announcement for proposed changes, if any. But the general consensus is...

Wow! Well then it seems logical to argue that if the patient's civil rights were violated because they were denied Kalydeco on a state level, then how is it any different that all CF patient's civil rights are violated by SSA stringent requirements and an archaic and restrictive process of...

"triple15", Really? You have got to be kidding me! That's really upsetting. I think I'll talk to the CF legal hotline. Perhaps they can offer an update. I'm watching CSPAN right now and I'm appalled at the people who got disability for seemingly trivial conditions, in comparison to CF yet we...

Cam, I'm sure glad you have some folks here who are helping and I do hope the doctors can resolve it. I don't have an immediate solution but just know that your are in our thoughts so please let us know how you are doing.

Dang! You testify, sister-girl! Seriously, I think you have very valid points "Believing". I think it draws attention to the fact that we are all struggling to some degree in our lives and it's tough. Sometimes it's hard to galvanize everyone on a particular subject like disability, SSDI...

I really wish CFF would give us an update on the SSA negotiations. That's the disconnect. We don't always know what's going on or where to look.

bharison, I'm so sorry your sister succumb to CF but I'm very glad you've made it this far and are now on Kalydeco. Please let us know how you're doing. You give us hope for sure! I'm glad you enjoy the CF Patient Information. Many patients and families aren't aware of it but it has a lot of...

Stephen, that's really awesome that you're on Kalydeco! You give us all hope! I'm glad it's a real life changer. You should share your experience if you haven't already. I'm really happy for you. All the best!! Yes like you and Ethan, I like that data. The difference is that I'm not as informed...

Stephen, I'm so glad it all worked out for you! First I hope I live as long as you, second that I come in for a soft landing in the future, just as you. Yes, it would be great for you to get Kalydeco. Me? Given my rare gene combination, there will be another ice age before I get it. I see...

Me too!! ;-)

Hey Stephen, I remember you! No doubt you're the oldest CF patient on the forum. I'm so glad you are here and hopefully in relatively good health. You give us hope for a longer life! Yes, the reports take a year to assemble, hence why we won't see the 2014 data until early 2016. Randford

Look at pages 18 and 19 on the Patient Registry Report - 2013. Specifically on page 18, (The Socioeconomic Characteristics of Adults 18 Years and Older with CF in 2013). And keep health insurance coverage in mind. Only 34.3% of patients are fully employed and 12% is part time. That's 46.3%...

Just look at pages 18 and 19 on the Patient Registry Report - 2013. Specifically on page 18, (The Socioeconomic Characteristics of Adults 18 Years and Older with CF in 2013). And keep health insurance coverage in mind. Only 34.3% of patients are fully employed and 12% is part time. That's...

This just in... http://www.cff.org/research/ClinicalResearch/PatientRegistryReport/ Please take this survey and let CFF know what you think. For those seeking to message CFF on disability, SSA and SSDI issues, this is a good opportunity...

That's an outrage about your mother's friend. I so am happy for Jshets. But you are right. People are suffering and dying. That's your death panel. That along with affordability.

I don't understand why CFF doesn't monitor this forum and provide feedback. Perhaps they do under cloak and we don't know it. But you'd think with so many people crying out for help, there would be some measure of cross communication and feedback. Or perhaps some degree of marketing to promote...

Cutecurlz, thank you for telling us how thing go in Canada. Yes, "Believeing" it is shameful how SSA views Cystic Fibrosis and other diseases. Some patients/families argue the pros and cons of the "disability" label...yet we give billions away to the self-entitled, giveaways to those who have...

Glad to hear about the Assistance Fund. Glad that worked out. Yeah, it's a mess. Insurance companies have a fiduciary responsibility to their shareholders to be profitable...not make people healthy, hence why they are rating up grandfathered plans, making them so expensive to push people into...

PARC is a good resource but yes, they are very limited. As long as you have health insurance, they can assist with a copay assist, for example. And yes, you can go to the assistance programs directly offered by the pharmaceuticals. If you're destitute and without insurance, they offer Medicade...

What a wonderful thing to do! I'm sure other patients would really enjoy them as well. You can reach out to CFF or your local chapter. They could be donated to other patients or perhaps raffled during an event to raise money, whatever you choose! I gotta say, I'm really impressed! You battle...