Ok this is tough... I know.. but here it goes. Treatment is always about who has the better health care and or the money. what do you do if you dont have either??? this leads into my question and this might help others if any of us have answers!
In order for comp to approve the treatment my neurologist believes will help me, I have to pay the difference of costs as they will only pay in NY fee schedule and JOHNS HOPKIN is only accepting maryland fee schedule, and I am told that it will be significant. I was advised I should be prepared to receive a bill of up to 7-12,000 dollars.. where is that money going to come from. my question goes out to all.
Does any-one know of a charity group that can help offset this cost, and or an organization that can help fundraise for individuals that cannot afford such pricey treatments with the RSD/CRPS "issue"??
Now I have already contacted tracy at RSDSA and she is looking into it as well. I also have tried workers comp board, Advocate for disabilities, and local social services. in wihich they all said ..Im not sure but the will look into it. I also left this same question for my comp atty and liability atty.. In step I tried to find a phone # contact for the house of delegates which is directly resposible for the AMA to see if they can look into their guide lines for treatment, only to find out that nobody can find a number for them, I also sent emails to theAMA
(i do not know what I truly expect from them but why not right?)
I also have placed out feelers in the community around me to see what might pop up. but I would like to know on a more broader scale what options we as a group have.. so any information would be great and hopefully some of the better minds on this forum might be able to help make what ever answers I get be more than what it is. and as for the greater minds I men all of us as a whole.... thank you and peace and low pain to all

You're generally pretty limited to stick with treatment in your state in many cases... If you must go outside, it might be time to consider settling with a Medicare set aside. Are there no options in state that are worthwhile pursuing???

It is amazing that NY fee schedule is lower the maryland. This is suprising to me. I'm not sure what to say, except I feel that shortly I will be doing the same thing. Because it was recently brought to my atty.'s attention that my dr. is out of network. (although they have been paying his fee's for 2 years.) so I may be able to fight it with the workers comp. board.

Have you applied for medicaid? They will usually cover out of network dr.'s if your dr. is referring. I wish you the best of luck and I hope and pray that this is quickly resolved for you.

I have been whining about this very issue for years, after being reduced to poverty. Had 9 surgeries, no health insurance due to pre exisiting conditions. Now with medicare/ dissability, left with medicaid part D which refuses to pay for many of the medications I need. Including one for RSD, which elimanitates a need for most narcotics. I went to Canada a number of years back on a protest over medical costs. I am being denied a medication to prevent esophagal cancer. I have to appeal over and over again. It is about money, not about the individual human. I do have good doctors, but most do not except medicaid, so i get suck with the bill. No answers, and I wish there were some smart people out there, to prevent people from loosing all they worked for, their whole lives. I wish I had the answers. I am somewhat bitter about the whole situation for all of us, with medical conditions that cost way more than what we can afford in several lifetimes. I will keep you and those of us in financial distress in my thoughts and prayers. ginnie The three meds. I need cost more than what I receive in a month.)

Ginnie, there certainly are many low income pharmaceutical programs. What was the med/s are most urgent? Are they meds you've actually had a good response from through samples or are you just hoping for a result? Oftentimes Medicaid won't approve a medication, but if you speak to a pharmacist they will tell you of options that are similar that are covered. Also, you can also look up which meds are covered in any particular Part D plan, and then plan to switch accordingly.

I wish there were answers. My doc. has gone to bat for me with severl reps. and though the pharmacutical company.
The one I need the most of for RSD. It is a mix of 6 drugs in a topical for. It has allowed me to wean off morphine. The origional company who provided my first script, did something bad and charged medicaid bogusly, and went under. I can't get this script now anywhere. They want $30 dollar per gram, and she wanted me to have 240 grams, for application 4 times a day. I don't know who to appeal to. Medicaid part D said NO twice even with letter from doctor.
The other one I need is to prevent cancer. I have barretts esophagus. It is pre-cancer. I need a double proton pump inhibitor. Medicaid part D will only cover 30 day period, not give me the 60 I need. I can't control this disease, and I get endoscopy every 4 months. Called Delixant. Doc has written two letters, and I already appealed. How do I get in touch with the company who makes that drug? Would walgreens have information on it? This med is $350 per 30 pills. I only receive 600 in benefits per month. Not enough to live on, much less for meds. I am currently loosing my paid for home. Can't pay the bills or the taxes, in real trouble, very bitter about it.
I am scared to say the least. I also go see a physiatrist, she has put me on B12 injections, proton pump inhibitors prevent the absorbsion of B12, so it is needed. She also put me on 7 other suppliments as I have 5 auto immune disorders. NONE are covered. For the first time in years, my hair is growing back and so are my nails, I had lost both. So these are working, I just don't have the money for them. I am in trouble in so many ways, I don't always know which way to turn. any information you can provide I will follow up with. The vitamines are over $200 a month. Obviously, these needed things are more than I get in benefits. That is why I can't pay my bills, and am loosing my home. Thank you for your ear. I can use advise for sure. ginnie

Litlove. My neurologist is pushing for john hopkins in belief this will help a great deal. so I am trying to go down every avenue before giving up on the idea of going.. he put in alot of leg work to get comp to approve it even if not fully I owe it to him and myself to try my best to make it happen. this is the last leg if it comes up lame then I shoot this horse and try buying another..
knowing i did all I can to get this treatment.. I am still pooling information on all other treatment options.. in fact I am ready to start presenting treatments that seem to have the best results, and some that just may be wishful thinking.

alt1268.. I too was surprised. but I do not have and exact cpt code or treatment plan to present to both maryland and NY to compare myself what the difference might be. but the patient rep and JH said most ny work comp. patients have a large bill when they leave.. I am hoping I can find a way to offset any treatment that might have to come out of pocket.. I was already denied medicaid .. and billing out to another insurance when comp is responsible is against the law in the great NY state.. it would cost me disability ,any comp benefits i am due, and possible jail time and fines..
im sure we all know the creak I am in and I am with out a paddle.

ginnie.. as far as meds some companies have free or lowcost meds for the destitute. oyu should try to contact the manufacturer of the drug prescribed. also pharmacies have generic versions for next to nothing or another med that might do the same thing for next to nothing... ask the pharmacist for the company name and also explain the situation to the pharmacist. only good things can happen from there.
I have learned that asking a question ..no matter how stupid or hopeless is always worth it. as you never know who has valuable information that others did not know.. thanks all.. please keep it coming ... be well

That all really sucks...I am sorry to hear all of it. That is a lot of money and other than the avenues you have already tried I don't have any better ideas. Will the hospital work with you on any type of a payment plan or a discount program or something for the out of pocket costs? I know that even on a payment plan it's still a matter of coming up with that money every month...but it might be easier to handle that way. Or would there be some way for you to get a loan if the hospital can't do a payment plan for you?

I know these things aren't ideal and it would be better if you could get some help to pay for it so it doesn't have to come out of your pocket. I didn't pursue some treatment options (like ketamine) because of the cost. I just didn't have the money and the stress of even thinking about where to come up with it was just too much. I'm happy with the way things have worked out in regards to that...it wasn't meant to be for me...but I know how you are feeling right now. When we have to make decisions based on our pocket books instead of based on what we actually NEED...that is sad. But it is often the reality unfortunately.

I hope you can get it worked out. I think it's great that you have a doctor willing to go to bat for you. That's half the battle right there really. Good luck and if you find anything out about getting assistance, please share. I'm past needing it at this time (though who knows what the future holds) but I know there are many others in similar situations who could use the info. Take care.

This might be helpful for some of you.

Pharmacy Discount and Patient Assistance Programs
By Psych Central Staff

[Psych Central Drug Discount Card

You can learn more about the Psych Central Drug Discount Card here and save up to 80% off your medication costs — including prescription and over-the-counter medications. Psych Central’s drug card is the same one as you can get from NeedyMeds below and comes with all the same benefits.]
and more -
http://psychcentral.com/lib/2006/pha...ount-programs/

No paddle for me either. I did all that you suggested. Dead end so far. Docs. went to bat for me with mediare Part D and the drug manufacturer. I will have walgreens investigate for me directy today for dexilant.
I wish I could give you a paddle. I too, lost all I had over medical issues, and am loosing my paid for home because of it. I am not pleased either after 30 yeard of work. Medicare/medicaid does not guarantee you will get the care you need either. found that out the hard way. I do wish you better days painman. ginnie