Thinking...is there any famous person with WG?

[wolfewispr]

It's absolutely the truth. but being filed for disability iam not elligible now for medicaid anyway. according to the attorney until after the 2 year waiting period if i understand correctly. maybe i'll try filing online anyway see what happens. that would definately take the local aspect out of it. all three times i went to them locally. but if being filed for disability makes me ineligible then it's a waste of time. but i'll try. medicaid is what my taxes have paid for. of course it's not been available and for the reasons i described. I don't throw in the towel without finding out why. So being told i was not eligible due to my status you can bet I'm going to ask questions. The process to me i thought,.. should have been simple... i worked and paid taxes and a portion of those taxes were supposed to go to medicaid and disability if ever needed. So this whole process has been an eye opener. realizing that the taxes paid in obviously weren't going to be given back in benefits they were supposed to go for. It certainly frustrates the situation.

[annekat]

It's absolutely the truth. but being filed for disability iam not elligible now for medicaid anyway. according to the attorney until after the 2 year waiting period if i understand correctly. maybe i'll try filing online anyway see what happens. that would definately take the local aspect out of it. all three times i went to them locally. but if being filed for disability makes me ineligible then it's a waste of time. but i'll try. medicaid is what my taxes have paid for. of course it's not been available and for the reasons i described. I don't throw in the towel without finding out why. So being told i was not eligible due to my status you can bet I'm going to ask questions. The process to me i thought,.. should have been simple... i worked and paid taxes and a portion of those taxes were supposed to go to medicaid and disability if ever needed. So this whole process has been an eye opener. realizing that the taxes paid in obviously weren't going to be given back in benefits they were supposed to go for. It certainly frustrates the situation.

A couple of corrections, as I understand it: You CAN apply for Medicaid and Disability at the same time (I did) and applying for one does not make you ineligible for the other. I think you are thinking of Medicare, not the same as Medicaid; true, you must wait 2 years after getting disability to get Medicare, unless you are 65 or over. (Retroactive benefits will shorten the waiting time.) Medicaid is available to people who have not paid taxes, SS Disability is not. True, since you have paid taxes you can feel more deserving of Medicaid than someone who has worked very little, but if they have the medical need and no income or assets, they can get it. Not so with Disability, you can only get it if you've paid into it, and you get it regardless of your assets. I'm not sure about Medicare in that respect, for senior citizens, whether they can get it without paying into it. I am no expert by any means. I assume your lawyer specializes in Social Security, Disability, Medicare, and Medicaid and knows all the distinctions between them.

Even if you apply online, which is an exhausting process, you will still have to have a conversation/interview with your locals in person or on the phone, under warning of penalty for perjury. Then they send you a transcript of what you said and you have a chance to call in and correct anything they got wrong. I did not find that part to work well, as they didn't return my calls. It all worked out in the end, though it took me a long time, being sick, to actually get the online part done. They processed me for Medicaid and Disability at the same time and then told me I had too many assets for Medicaid but that I qualified for Disability. And then they sent me a big packet of more questions to answer in writing, which I wasn't expecting. My benefits began retroactively to July 2010, so I got Medicare on July 1, 2012, even though I'd only been approved for Disability since Dec. 2011. It was a convoluted and sometimes annoying process, but I'm grateful, as I know that not everyone who applies or even everyone who has Wegener's is successful. Again, good luck.

[annekat]

Something I should have clarified: A person can get BOTH Medicaid and Disability/Medicare benefits. They may have paid into disability but still be in a financial hardship situation with no insurance and little or no income or assets. And their Disability benefit may be pretty small. So if they get both, it's not like they get twice the amount, but it's somehow averaged together and divided up between the two. I know someone who has both. I think the advantage there is that Medicare does cost money in premiums, copays, deductibles, etc., and Medicaid helps pick up some of that extra cost for low income people. Also, the Medicaid should kick in before the two years waiting for Medicare. So you should continue to pursue Medicaid even though your application for Disability is in. Having both might put you in a better position in the long run. Again, since I'm no expert, anyone can correct me, but I think that's how it was explained to me.

[wolfewispr]

[QUOTE=Lightwarrior;61754]

Are you close to any center that may have a Wegs specialist? Go to this site and you may be able to find a doctor close to you. Here is the link: Vasculitis Foundation | The Vasculitis Foundation supports and empowers patients through education, awareness and research.

UPDATE!!!!!!

I got a letter yesterday telling me that I won my disability case!!! they aren't going to back date the medical...so it will be october of 2013 before i can get medicare or medicaid..(still don't know which is which) but at least i'll have an income to help pay for medical care til then. i can use the backpay to help maybe. I still don't know what medical cost will be. but finally...after waiting a year and two months for disability the disability judge came through.

My attorney went to the judge and presented my health issues and the immediate need for life saving medicine and the judge approved me without me having to go to court. SO finally some good news....I can't do it in real life....but in my mind i'm doing the happy dance!!!!

[BrianR]

[QUOTE=wolfewispr;61927]

UPDATE!!!!!!

I got a letter yesterday telling me that I won my disability case!!! they aren't going to back date the medical...so it will be october of 2013 before i can get medicare or medicaid..(still don't know which is which) but at least i'll have an income to help pay for medical care til then. i can use the backpay to help maybe. I still don't know what medical cost will be. but finally...after waiting a year and two months for disability the disability judge came through.

My attorney went to the judge and presented my health issues and the immediate need for life saving medicine and the judge approved me without me having to go to court. SO finally some good news....I can't do it in real life....but in my mind i'm doing the happy dance!!!!

Great news! You need to get a good specialist on your case and get the proper treatment started immediately. You will improve quickly once proper treatment is administered but you cannot wait.

[wolfewispr]

[QUOTE=BrianR;61928]

Great news! You need to get a good specialist on your case and get the proper treatment started immediately. You will improve quickly once proper treatment is administered but you cannot wait.

Well i don't know what i'll be able to afford til i get on medicaid.. but i'm certainly going to do all i can!

[KathyB]

Outstanding!! It's really great hearing your upbeat comments! A positive attitude goes a long way! Congrats again!

KB

[annekat]

Seems to me the most important thing is getting some proper Wegs meds into your system. If you can just get a prescription for Cytoxan and Prednisone and Bactrim DS, and pay for them somehow, you'd be on the road to recovery. The generic cyclophosphamide is pretty expensive, but the other two aren't at all. Pred is the cheapest prescription drug I've ever heard of. Methotrexate is quite a bit cheaper than Cytoxan, but with your lung involvement, and any kidney involvement, they'd go with CTX, I think. RTX is way expensive and harder to get approved, but you never know. I would try to start the prednisone right away, if at all possible, since it is so cheap. Of course, I am not a doctor and have only known anything about any of this since April 2011.

Good luck!

[drz]

[QUOTE=wolfewispr;61934]

Well i don't know what i'll be able to afford til i get on medicaid.. but i'm certainly going to do all i can!

Congrats on the appeal. That should help you sort things out.

[beeinformed]

Hi!

I just wanted to say that the pharmaceutical companies who manufacture cytoxan, bactrim and prednisone (and other medication you might need) have a program for patients who have financial difficulty in paying for the medications. I would suggest you contact these companies to see what they can do for you as you can get 12 months of free medication from them. You might want to use the google search engine to look for example, the manufacturers of cytoxan and see if there a patient assistance program (there usually is) that is available.

I hope this info is helpful for you!