all about the money...
 

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.

Hi painman
 

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.

Hi lit Love
 

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/

painman...
 

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

Discount Drug Card
 

Ginnie - not sure if you looked into this or not OR if any of your drugs fall under this plan, but there is a discount drug card offered in pretty much every state. Once you sign up for it (for free), you would be eligible for low cost or free prescriptions.

Just Google it - free drug card in Florida (or whatever state you reside in).

Hope this helps!
Nanc

Hi Jo*Mar
 

Does the Assistance program still cover you if you already have Medicaid, and medicare Part D?. That has been the issue with the company itself. If you have medicaid, you don't qualify for any patient assistance, even if Medicaid denies your claim, doctors letters and all. I will look at the program. thanks Jo*Mar, I wish you all the best ginnie

Hi Nanc
 

Walgreens does have a discount card. However the revisioned price is still too much. No luck with the pharmacy company this a.m. either. I won't give up. I see my doctor on Friday. ginnie

hi guys.. thanx for the responses.. jomar good to know i am adding this to my list.. also cvs offers aid but only with the generics.. also local churches offer help to those in need for little this like non opiad drugs.. just for research. I would have never have thought to check with the church.. please keep it coming I am making a list ..hopefully I can get somewhere. this isnt just for me so any information is good especially if we can get it all in one spot...
we can join our knowledge and fight together or hold onto it and be alone.. I believe this is a huge truth of the world.. we made the first step to come together here lets keep it join... peace and low pain to all

keep in touch
 

Keep in touch pain man, there are a lot of us in deep trouble over medical issues. Nobody can help getting sick. There needs to be help for those who need medicatons. I need B12 injections and med. part D won't cover that either. I am on a proton pump inhibitor, which stops absorption of B12. Too many things are not covered. I will check with my local churches. ginnie

Hi painman, I've kinda checked out in life. Going from doc to doc, they telling me it doesn't spread, and them wanting to push a spinal cord stim. First Ive had 2 back surgeries (dont want to mess that up), getting MRSA, paddle leads breaking, batteries stop working (having it ripped out) or RSD spreading to surgery site. I tell them (pain management docs) that SCS is not an option for me. I have 4 options acceptable to me to try. HBOT, tDCS, ECT or I would be willing to try the Ketamine infusions. Im so frustrated I cry everyday. I talk to my insurance co on a regular basis (they keep telling me Im depressed and I need help) duh Im so upset they wont pay for the HBOT. Like you said...where are we to get that money? I think come on people!! It might put RSD into remission and for god sakes its only oxygen. Just more stress on us.
My thoughts on seeking help financially are....writing Oprah or Ellen or Phil. Not one letter of desperation but many. Possibly from many of us. Next thought is I typed in John Hopkins financial assistance. There is a form. I would not do it online I would mail it hardcopy and include your own personal letter. I have one on my desktop called letter of desperation. You are a very good writer and I truly believe if the right person reads it they might take you seriously and help you. Third thought is...get the procedures from John Hopkins, let them send you a bill, then file bankruptcy. Im so fed up with our medical association that I could scream. I feel like a tiny grain of sand on the beach and no one understands or cares. We are supposed to go on with life, learn to deal with this horrible pain. Manage my pain better? what? I get up every day so dissapointed that I lived thru the night. I breath and move. I think I have managed my pain. (ok, im rambling)
*edit*
I think about you all the time and I truly wish you luck. Keep fighting not only for yourself but for all of us.
Smile, breath deep and stay strong
Shelbie

..hi all . I am chiming in on shelbie but I want to start off
ginnie.... try cvs they have 400 generic prescriptions for 12 dllrs and under...
ok.. now .. shelbie. I ask that you keep coming on to this site nightly.
I understand the will to move on is trying but if you are part of something larger it helps. speaking with the group of us will at least offer a safe haven to vent. no way would i say do this in place of professional care.
this is a bitter pill to swallow this beast . I am lucky enough to have a support group here on the island (granted I am new to it but still) , plus this site has allot to offer . great people, great advice, and great research ability along with moderators and administration. This is here ,we are here use us to help you.
and generally... I am working many fronts trying to make some headway.
I have written emails to my local government branches(I do not expect much of a response ) but maybe if we all start writing to them we can make them look
at us an see what we are talking about. I will chk in like I said this is the perfect forum for us to help each other and ourselves..(thank you neurotalk)
peace, and low pain...

Hi shelby
 

:hug:No checking out of life. We are here for you. I run back to this site, when the blues get so bad i can't see straight. Vent, cry, don't stop the desire to get more help. I had Katemine infusions in my spine. this worked, but not permanentyly. It also didn't hurt. I hope you can find some solution. I too work to receive needed health care. I have medicare/medicaid, today i was told I would be receiving 5 bills for the 20% of my next endoscopy. well that didn't go over well, as I am loosing my home.

Hey painman, I did check with CVS. No generic for the medication I need to stop the progressin of barretts esophagus. Turned down flat from medicare part D, even with letters from the Doc. and me. CVS won't do compounds. The one pharmacy who does wanted 30$ per gram. I was ordered 240 grams, are they kidding? This is stopping me from the need of narcotics. so they would rather have me take morphine, than this compound that works? Our medical system is driving me bonkers, as it is alof of the rest of us. It is enough to make most people want to tear out the little hair we most likely have left.
I care about all of us in this situation. We all need the support of each other just to go day by day. Keep coming back shelby, vent, we will listen. In turn you will be helping us to cope the same way. Maybe we can give each other some ideas. I do care.....ginnie

Wow, I couldn’t agree more with all of you on all levels. I so appreciate this site and all of you that share within it. I come here when I feel decent, and I come here when I want to scream, cry, give up, give in, or reach out. It is a source of good amongst all the bad. Unless you have RSD, there is just no way you could possible comprehend completely what it is to live with this disease day after day. It is also difficult for those who love us, who feel so helpless at times as they journey with us.

And our medical community and insurance companies, and government need to WAkE UP! It has become sheer and utter nonsense… period! It’s hard enough to fight through the days, and then to have to fight to get the help we so desperately need. It’s just ridiculous on every single level!

I thank God for all of you, and I pray answers, treatment options, and heck I’ll even go so far as to say a cure, for all of us will be within our reach. Until then, I pray for pain free moments for us all.

painman2009, It may be worth the effort to look at the new insurance plans available to those with pre-existing conditions. This is part of Obamacare and is available in each state. The state of NY should have a website explaining the insurance and how much it costs. But the coverage does exist now. What is not set up quite yet are the insurance exchanges which will not go into effect until 2014. The costs are different in each state. There might also be a waiting period of 60-90 days.

Dear Jimking
 

What new insurance.? I just got a quote for my friend who does NOT have preexisting conditions through Humanna. She is 58, a former smoker. They quoted her 1,000 per month. I don't know how much you all make, but that is so far out of reach it's funny. If there is some program my state in Florida is not awhere of?, I sure would like to know.
I never had insurance due to pre-existing conditions. This can't come fast enough to help all the folks that are in my position. I lost all two generations saved for, and now my home. I wasn't granted any insurance ever. ginnie

I calld many people in the NY social services area.. and they responded by saying that obamacare isnt until 2014. they won't make changs until they absolutely have to.. until then it is business as usual.

Ginnie, it is part of the new Obama care coverage. You can not be denied coverage because of a pre-existing condition. This coverage is somewhat new but depending on the state it can costs upwards and beyond a grand a month. In 2014 the cost should come down.

I don't think that is correct. The full plan goes into effect in 2014 but every state by law provides pre-existing insurance coverage and I do not mean Hipaa coverage either. I know for a fact Maryland, DC and Virginia have it. Call your Congressman's office because I'm pretty damn sure you have it in NY too. Dig deeper.

Check this sight out.
https://www.pcip.gov/#StateInformation

It will give the info about pre condition insurance for each state. NY does seem to be a bit different but it has coverage at $340-460 per month.

http://www.healthcare.gov/law/featur...e-plan/ny.html

rsd
 

I've suffered from RSD since a workmans comp accident which crushed my right foot with about 2500 lbs of freigt on a manual pallet jack. It's been about 8 months since the injury. my toes are still swollen. I can't cover my foot with a blanket at night because of the pressure. I have shooting pains. redness on the foot. feels like my foot is on fire.But sometimes I feel like I'm all flushed, not just my injured foot. then sharp stabbing pains throughout the day and night. Sometimes when I'm just sitting it feels like all my toes are crossing over one another and it's very uncomfortable. but would doing a bone scan really help them determine that RSD is clearly what I have. my 3 toes 2-4th on my foot are "hammered" and when I step in water and try and put pressure down on my foot only the big toe and the ball and heel are the only things that show up. What do I do next???? Please can someone tell me if they have had the same problems??? I'm desperate to hear from anyone.

Yes Jimking
 

It was way to late for me. I started to go down hill 10 years ago before Obama care was a thought. Great for future patients. I am on SSDI and medicare.medicaid now. My friend cannot afford what these new available policies cost. what am I missing here? All quotes she is getting are not affordble, and this state Fla. said it does not impliment the policy changes until 2014. Humph...ginnie

Same with my wife who was injured 10 years ago. We almost went bankrupt, would have if it wasn't for our congressman. My wife is now on Medicare too.
Are you having an issue with the link I provided? Choose the state that you want to check out rates where it says "Find PCIP coverage in your state" scroll to your state and hit the button that says "Go" I cut and pasted the info from Florida.
https://www.pcip.gov/#StateInformation



Standard Plan
Age Monthly
Premium Cost
00-18 $118
19-34 $176
35-44 $211
45-54 $270
55+ $376
Extended Plan
Age Monthly
Premium Cost
00-18 $158
19-34 $237
35-44 $284
45-54 $363
55+ $505
HSA Plan
Age Monthly
Premium Cost
00-18 $122
19-34 $183
35-44 $220
45-54 $280
55+ $390

Hi jimking
 

I will look up that site. If I can save just one person from having to loose all they have, it is worth the trouble to investigate. I got the runaround from more agienies than I can count. My own situation is horrible, SSDI and medicare/medicaid would not let me keep the money in a trust specifically to pay my taxes and keep me in this paid for family home. Nice HuH? After 30 years of work, I expected better. the lawyer we had knew nothing about medicare/medicaid law, as they are an entity unto themselves. I am loosing my home now, and I have no idea where I will wind up at. This wiped out what two generations saved for with 9 sugeries that I had, before I got disabiltiy. I want to help this friend of mine, not have the same thing happen to her. Thank you for the information. I will do the reseach tomorrow. ginnie

At $7200 per month Medicare and/or Medicaid is unlikely to ever pay for a compound like that.

You may want to try low dose naltrexone.

http://painsandiego.com/2009/05/26/l...altrexone-ldn/

The fine print is always the deciding factor. caid has many different parts in this state , as we have healthy NY. and those are all different caid contracts and you must fall into certain criteria for each different one. I was caid covered through private carrier. pre-existing is the case. but Im on comp as well... it is illegay here to bill out to private insurance when a "pre-existing" case is covered by , comp- no fault, or other liability insurance such as home owners, or even if a law suit has been filed. but I have received info from RSDSA.. i suggest that ginnie get the list from them.. it has a book load of info on perscription help.. still working on medical offset though.. I am trying a couple of avenues and also await a call back from my atty,s

Yes, that does make sense in that if you are on workmans comp, you're out of luck on any for-profit plan. I've heard so many stories about how WC stonewall on injured people's care. My brother in-law is one who is a lawyer out of NJ that does nothing but fight for WC claims for the benefit of the insurance company, not the injured party. He hates his job, but loves the money.

Hi lit love
 

I will ask about this naltrexone at my next visit. I got that lotion free, one time through a mis-handleing of the script up in Georgia. Billed to medicaid I guess. The thing is it works and I sure hate taking another pill. If this new med is anything like morhpine, I don't think I would do it. I am going through morphine withdral right now and it is miserable. I was sick of taking them, and living my life around them. This blasted RSD or PN is misery at times that is why this doc. tried the compound. You are right medicare/ medicaid would see you dead, before giving you a medicaiton like that. Thanks lit love for caring. ginnie

Ginnie, please read the link in my previous post about low dose naltrexone, found in the quote below. I have not tried this med but others on NT have had good results. It should also be inexpensive since it's a generic.

This link explains that it works to suppress opiate withdrawal symptoms.
http://opioids.com/naltrexone/ultralowdose.html

I did lit love
 

I did read the article and copied it off for my pain specialist. I am so afraid now to try anything. I quit morphine, and going through this is awful. I am going to talk it over with her, see what she says. she is very open to ideas, and no doubt will have heard of this naltrexone. Thanks for caring. ginnie

..................................Im looking for non profit, also looking into how to get one started. if my attys ever get back to me. Im not active all day let alone 80perc. of the time but when I am. I do as much as I can.
and as for your brother in law but ..like i said
"ITS ALL ABOUT THE MONEY.. and thats not his fault it is the system set up allowing this. some things need to change . but not for the betterment of the wealthy but because .. its right!!!