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Arkansas medicaid case settled
- Thread starter Imogene
- Start date
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 disability application on a federal level? And given that SDDI and Medicare are not in sync with CF patients and patients unduly suffer, waiting 24 months for Medicare, that sounds like a huge civil rights violation to me, based on the Arkansas ruling. At its very foundation, people are being denied the right to live and are made to suffer over money. If we could bring this argument to the federal level, it might help a great number of patients in the future.
Great article. Thanks Imogene!
Great article. Thanks Imogene!
believingjesus
Banned
I agree Randford. Your logic seems right-on. You are the intelligent one though and I am not that smart but to me it seems that making people wait 24 months to get on Medicare after they are FINALLY approved for disability is a violation of basic human rights. People are dying waiting to just get approved for disability - like my Moms friend did and so many, many others. I wish we could get something done about this as to me it just seems cruel. You would think the SSA would recognize CF as a debilitating disease at really any level but especially way before they currently do. If the restrictions tighten I can not imagine the pain families of loved ones waiting to get on will face.
Aboveallislove
Super Moderator
"Civil rights" is a catch-all which means different things to different folks; I'm not sure if the lawyers used it or it was the blogger's word choice, but that case is in no way applicable to the issue of SSI denials and the delay in Medicare. That case involved a state denying coverage for a drug that was FDA approved for the specific purpose and users based on the drug's cost. Pulmozyme and hyper-sal and not substitutes for Kalydeco. Period. Which is why the state settled and why no other state ever tried to do the same thing. SSI disability cases go to federal court ALL THE TIME. If you are denied benefits, you are entitled to appeal to a federal district court and a federal court of appeals and could seek review in the Supreme Court, although I doubt they'd ever take the case. The delay between Medicare coverage and SSI disability is statutory based. Congress created the system and Congress makes the law--court's enforce it, so no court can create a "right" to health care or disability benefits, but can, as in the Arkansas case, enforce the law that Congress passed.
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 that it is hoped that things stay as they are. So for those who are considering application, you better get on it and fast. Talk to the CF legal team. Don't go it alone or hire some DUI lawyer who spends an hour on your case. You're wasting your time, otherwise.
http://www.cff.org/LivingWithCF/AssistanceResources/CFLegalHotline/
And as fanciful as the prospect, a disability declaration would literally be an act of God to achieve. The government has all but closed the door on the "compassionate allowance" prospect for just about all diseases unless there is very specific treatment and basically an immediate clear and present time constraint for life. SSA did it for two other diseases, (ALS and kidney) and that was it. They were done because it opened the door for others. By default, the requirement focus is extremely narrow so given that CF patients have a variety of expression and treatments, it would be extremely difficult to achieve a disability declaration as a default for all patients. It's already been tried years ago...and as difficult and well intended as the fight was, it ultimately failed. So enough of that.
The bigger issue is the expense of medications. No offense to any pharmaceutical but it's hard for me to understand why any of the medication we take is so darned expensive and as a result, life-limiting. Yes, it's unique and CF-specific but $300,000/year? I dunno. No wonder the government chokes at the prospect of paying under Medicare/Medicaid. So just imagine how they feel about disability. So who do we blame, if there is blame? The government who is cost-conscious and don't want to pay or pharmaceuticals who don't want to lower costs? Hmmm...
There you have it.
http://www.cff.org/LivingWithCF/AssistanceResources/CFLegalHotline/
And as fanciful as the prospect, a disability declaration would literally be an act of God to achieve. The government has all but closed the door on the "compassionate allowance" prospect for just about all diseases unless there is very specific treatment and basically an immediate clear and present time constraint for life. SSA did it for two other diseases, (ALS and kidney) and that was it. They were done because it opened the door for others. By default, the requirement focus is extremely narrow so given that CF patients have a variety of expression and treatments, it would be extremely difficult to achieve a disability declaration as a default for all patients. It's already been tried years ago...and as difficult and well intended as the fight was, it ultimately failed. So enough of that.
The bigger issue is the expense of medications. No offense to any pharmaceutical but it's hard for me to understand why any of the medication we take is so darned expensive and as a result, life-limiting. Yes, it's unique and CF-specific but $300,000/year? I dunno. No wonder the government chokes at the prospect of paying under Medicare/Medicaid. So just imagine how they feel about disability. So who do we blame, if there is blame? The government who is cost-conscious and don't want to pay or pharmaceuticals who don't want to lower costs? Hmmm...
There you have it.
believingjesus
Banned
Wow. Were you told that it is very possible for the current restrictions to be further tightened? I don't even know what to say. I know it is negative thinking but we will all see when we go to get Kalydeco - which we are so fortunate to get - as to how that will affect everything. I know they can not deny it to anyone. I live in this world and I believe once the people who have employer-based insurance see whose costs are above $300,000 plus plus plus a year ? I guess I have to ignore it like everyone else.
"Believing", actually SSA had already proposed changes back around 2012 that might exclude a few items but at the 11th hour, CFF found out, got involved and offered testimony and letters from patients, families and physicians. The ruling has been delayed for well over a year and that's a very good thing. It is entirely possible that the regulations will remain as is so let's hope for the best. As it stands now, the ruling is supposed to be handed down during the summer but don't count on it. As I'm told, CF patients who legitimately are in need of SSDI and qualify, better get with the program fast and apply. And always contact the CF legal hotline FIRST. They are keen on requirements, direction and advice. They get it done.
I think what is key here is to advocate for lower pharmaceutical costs or at the very least better assistance to acquire the most expensive medications. PARC and CFF have worked really hard to make that happen but it seems that more needs to be done. If we can't get the government to budge, then it's up to other sources to make it happen. The best thing we all can do is research all avenues of resources to cover certain medications and the most important part. Reach out the CFF, PARC and the CF Legal Hotline. Don't feel alone and don't go it alone. There are people who sincerely want to help.
I think what is key here is to advocate for lower pharmaceutical costs or at the very least better assistance to acquire the most expensive medications. PARC and CFF have worked really hard to make that happen but it seems that more needs to be done. If we can't get the government to budge, then it's up to other sources to make it happen. The best thing we all can do is research all avenues of resources to cover certain medications and the most important part. Reach out the CFF, PARC and the CF Legal Hotline. Don't feel alone and don't go it alone. There are people who sincerely want to help.
Wow. Were you told that it is very possible for the current restrictions to be further tightened? I don't even know what to say. I know it is negative thinking but we will all see when we go to get Kalydeco - which we are so fortunate to get - as to how that will affect everything. I know they can not deny it to anyone. I live in this world and I believe once the people who have employer-based insurance see whose costs are above $300,000 plus plus plus a year ? I guess I have to ignore it like everyone else.
Jane, yes it is the case Beth Sufian worked on and in my book she's a hero and a life saver. She's a wonderful and passionate person for CF.
That is so great! Was this the case Beth Sufian was working on?