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Author Topic: Can Dialysis be Denied? Please Help!  (Read 8887 times)
BattleScars
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« on: July 02, 2013, 12:27:15 PM »

I'm really hoping someone can help me. I'm scared as hell and don't know where else to turn. I know everyone's situation is different but there has to be someone that's been through something similar or has an idea of what my options are.

Here's the situation. I've been on dialysis for a year and a half. I'm on PD, I do four exchanges at home a day. Here in MA we have the best insurance laws in the nation, at least for people like us with preexsisting conditions. By law in this state you can't be denied insurance because of PEC. So I'm on my wife's insurance and they cover just about everything. I'm also disabled and on SSI so SSI automatically signed me up for Medicare but I signed forms to get off Medicare because they were making me pay over $100 a month when I was already covered by Blue Cross. When I signed those forms it said I couldn't sign up again until open enrollment.

Here's where my problem comes in. My wife and I are moving to California. She's leaving her job here thus I won't be covered by Blue Cross anymore. I believe she's only covered by Cobra if she pays into it for some time but that doesn't cover me. Either way I will still need dialysis of course. If I arrive in California without any insurance what will I do? Will any PD clinic accept me? Could I possibly be denied dialysis completely? I'm so scared. I'm going to call SSI but I'm sure they won't tell me or they will give me bad info like usual. Anyone else ever hit a snag when it comes to coverage and did you still get your dialysis while everything worked out? Will I still be able to do PD? 
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Bill Peckham
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« Reply #1 on: July 02, 2013, 05:23:39 PM »

Beth Witten would be a great person to ask this question - she is a renal SOcial WOrker extraordinaire that answers questions over at Home DIalysis Central's expert board here
http://forums.homedialysis.org/forums/17-Beth-Witten-Social-Worker


She can either give you definitive information or find the person who knows.  Are you sure COBRA would only cover your wife? That surprises me.
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jeannea
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« Reply #2 on: July 02, 2013, 06:19:11 PM »

You can ask Medicare to let you in because of a change in circumstances but they are pretty rigid about that rule. Cobra should cover you both if you were covered originally. It will cost a small fortune for both of you. Defintely ask your current social worker and anyone else who might know what to do.

I had also originally refused Part B. i was on my Cobra and the guy in one office said I could sign up when Cobra was over without waiting for open enrollment. Unfortunately that was not true. I called. I talked to people. Finally I asked my congressman to hel me. He got me signed up for Part B in a few weeks. I immediately signed up for Part C and Part D as well.

Good luck. I wish I knew what to tell you.
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SooMK
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« Reply #3 on: July 02, 2013, 07:07:30 PM »

Be sure to check the COBRA guidelines. I was able to get COBRA coverage for my self-employed husband as well as myself when I was on it--also in MA. Just a thought. Best of luck.
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SooMK
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AnnieB
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« Reply #4 on: July 02, 2013, 07:09:23 PM »

I would be really surprised if you were unable to get this straightened out, since your wife's insurance had been covering your treatment before your circumstances changed. I agree with Bill Peckham about checking with a social worker to get the facts. I think you could also check with the National Kidney Foundation and the American Kidney Foundation about all possible sources for financial assistance. California also has state health insurance called Medi-Cal which might cover someone in your situation. Their web site is http://www.medi-cal.ca.gov/ . From a quick look at the eligibility rules for Medi-Cal, I believe you qualify. I'll be keeping you in my prayers that things work out for you quickly.

 :grouphug;
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Sydnee
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« Reply #5 on: July 02, 2013, 10:02:26 PM »

It's been a few years but when Ed was "downsized" from Agilent Technologies and we received COBRA it covered me and the 3 kids. It was the same insurance as when he was working. Man it cost a lot.
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
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« Reply #6 on: July 02, 2013, 10:02:58 PM »

My husband became disabled 14 yers ago and we had been paying for cobra, then cobra extension, then Blue Shield since then, and our whole family has been covered. He is now on Medicare too, but cannot drop the Blue Shield as then rest of us would not have insurance.  VERY expensive - just bumped up to $2500 a month, but we gotta have it.
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BattleScars
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« Reply #7 on: July 03, 2013, 04:38:54 AM »

Are you sure COBRA would only cover your wife? That surprises me.

Actually I'm not 100% sure on that. I'm probably wrong. But now looking at the cost that scares me even more lol
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BattleScars
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« Reply #8 on: July 03, 2013, 04:41:08 AM »

My husband became disabled 14 yers ago and we had been paying for cobra, then cobra extension, then Blue Shield since then, and our whole family has been covered. He is now on Medicare too, but cannot drop the Blue Shield as then rest of us would not have insurance.  VERY expensive - just bumped up to $2500 a month, but we gotta have it.

$2500? OMG! This makes me just want to stay here in MA and tough it out. I think we only pay maybe $50 a week or less for the both of us on Blue Cross. My wife wants to change jobs and scenery so bad and so do I but this may be too expensive for us if we have to pay for Cobra.
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Simon Dog
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« Reply #9 on: July 03, 2013, 05:34:35 AM »

With all due respect to the original poster, access to D is essential to life.   I find it unimaginable that someone would first commit to an interestate move, and then work out access to D.   There is no way I would commit to a move from my home area without being certain I had the D arrangements made in the new location.
« Last Edit: July 04, 2013, 01:44:32 PM by Simon Dog » Logged
amanda100wilson
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« Reply #10 on: July 03, 2013, 09:33:49 AM »

I must admit,  before we moved from UK to US with my husband's job, I made sure that I had 'dotted all of the Is and crossed all the Ts'.  I even had appointments sent up with docs. as I wa pregnant at the time.  I even got my husband to double and triple-chevk that wr would have insurance and that it would cover me.
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noahvale
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« Reply #11 on: July 03, 2013, 04:47:12 PM »

^
« Last Edit: September 19, 2015, 11:56:35 PM by noahvale » Logged
frankswife
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« Reply #12 on: July 03, 2013, 06:03:10 PM »

Why is it you cant pick Medicare part B up again, or even Parts C & D? My husband opted out of B, we were told he could pick it up again down the road if he wanted to, the worst thing that might happen is we MAY have to pay a 10% penalty for each month he could have had B but didn't. I hope we werent given wrong info!!!
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Whamo
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« Reply #13 on: July 04, 2013, 12:27:28 PM »

Why didn't you go with Medicare?  That was the prudent option.  But, it's your choice.
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Sydnee
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« Reply #14 on: July 04, 2013, 02:05:44 PM »

My hubby told me to tell you that you may qualify for Medicaid. In Wyoming at least if you get SSI you qualify for medicaid. You must ask for it but they give it to you if you ask (here at least).
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
jeannea
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« Reply #15 on: July 05, 2013, 03:59:11 PM »

Ok. Here's the thing with refusing Part B. yes you can get it down the road. You may or may not have to pay the penalty. BUT you can only apply during open enrollment I think Oct to Dec and then it will NOT start until the next July. So you can be left with no coverage for months. Or a year or more. I went through this myself. No one at the local offices will help you. No one at the national office will help you. My local office had specifically told me I could get it when my Cobra ended which was a lie or at least a miscommunication. I had to get my rep in Congress to help me get coverage. Without that I would have had no coverage from March to July one year. I would have had to quit dialysis.
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KarenInWA
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« Reply #16 on: July 05, 2013, 07:49:37 PM »

This is where I'm confused. I started dialysis in April 2011. My clinic said I didn't really need Medicare because my insurance was paying 100%. So I decided to not get it yet. As time went on, my insurance started to send me letters letting me know of my Medicare eligibility. Come Sept/Oct, I knew I was going to get a live donor tx soon, as my donor was completing her testing with flying colors and things were progressing nicely. I then decided to sign up for Medicare. My first statement backdated to my eligibility date of July 1, 2011 to Feb 29, 2012. It was a big bill, but I paid it. If I remember right, it was right before my surgery on Nov 23, 2011. I had no problem enrolling. In fact, for me, it was painless. I do not pay a penalty, either. Maybe this is because I only delayed it by a few months? I'm in WA state.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
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Apr 18, 2011 - Had fistula placed at GFR 8
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BattleScars
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« Reply #17 on: July 06, 2013, 02:50:15 AM »

Why didn't you go with Medicare?  That was the prudent option.  But, it's your choice.
I didn't go with Medicare because my wife's insurance has been covering me. I would have to pay the medicare premiums every month and it would be a waste of money and wouldn't help with the co-pays I already have to pay through Blue Cross.
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BattleScars
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« Reply #18 on: July 06, 2013, 02:53:24 AM »

With all due respect to the original poster, access to D is essential to life.   I find it unimaginable that someone would first commit to an interestate move, and then work out access to D.   There is no way I would commit to a move from my home area without being certain I had the D arrangements made in the new location.
I understand what you are saying but sometimes life gets in the way. If we don't leave in September we might never be able to move. We have a once in a lifetime opportunity coming up. If we decide to stay we have to be committed to stay here for several more years. I'm not going to risk my life over it though. If I don't get it worked out before then we'll have to stay. 
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AnnieB
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« Reply #19 on: July 06, 2013, 08:44:23 AM »

I really think you should contact the Medi-Cal office in California and see if they would cover your dialysis before you completely decide against moving. I believe there's an application you can fill out on their website. What have you got to lose?

Anne
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jeannea
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« Reply #20 on: July 06, 2013, 01:15:19 PM »

Yes this is all confusing. The difference is between not having any Medicare and then signing up (what Karen in WA did) and accepting Medicare Part A but rejecting Medicare Part B. Part A does not have a premium. The bill received for back payments by Karen would have been for Part B so she did it right by getting both at the same time.
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Wildrose
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« Reply #21 on: July 06, 2013, 07:42:05 PM »

On one hand it would be wiser if you did not move without having things set up to make sure you are covered, but if your wife has already given notice on her job its probably too late for that anyways.
I know that in Washington state there are programs available for insurance that the Northwest Kidney Center will help you figure out... dialysis  centers want to be paid. So chances are the clinic you go to in California can help you as well. Also, if you don't have insurance I believe you can go to the hospital to get dialysis... of course you will have the bills to contend with until you get insurance situated but you should be able to get dialysis one way or the other.

Good luck!
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1995 - Diagnosed with 'some kind' of kidney disease during first pregnancy at 16 yrs old due to excess protein in urine
1998 - Biopsy diagnosis of IGA Nephropathy at age 18
2007 - Successful second pregnancy, creatnine of 1.8 something
2009 - Successful third pregnancy creatnine of 2 something
2009-November of 2011 - Somehow went from Creatnine of 2 something to 5.43
November 2011 - Diagnosed with End Stage Renal Disease
3/28/12 - Started Peritoneal Dialysis
5/21/12 - Ended up in hospital for 5 days with PD fluid leaking through hole in diaphragm to right lung
5/25/12 - IJ catheter placed, 5/26/12 - First in center hemo treatment
6/15/12 - Back on PD for three weeks and hemo at same time, 7/7/12 - PD fluid leaked again, off PD and still on hemo, 7/15/12 - on PD again and hemo
7/23/12 - chest xray shows fluid leak again, off PD for one month with possible thoracic surgery in future to fix hole in diaphragm. 5.70 creatnine
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renalwife
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« Reply #22 on: July 06, 2013, 08:07:19 PM »

It is my understanding that Medicare is the primary carrier and your other insurance picks up the co-pay.  I any event, good luck, you need it.
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kitkatz
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« Reply #23 on: July 06, 2013, 11:49:02 PM »

A dialysis social worker at your clinic should be able to help you with your questions.
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« Reply #24 on: July 08, 2013, 08:21:33 AM »

Quote
Also, if you don't have insurance I believe you can go to the hospital to get dialysis... of course you will have the bills to contend with until you get insurance situated but you should be able to get dialysis one way or the other. Also, if you don't have insurance I believe you can go to the hospital to get dialysis... of course you will have the bills to contend with until you get insurance situated but you should be able to get dialysis one way or the other.

Impractical, since:

- Hospitals perform a wallet biopsy for all but emergency procedures, and if the biopsy comes up "no cash", treatment is not done.
- You do NOT want to let D go to the point where you are an emergency
- Hospital protocol may require their MD supervise the procedure ($$$$ consult on top of treatment fee).   
- The "rack rate" for D is WAY above what insurance companies negotiate.  FMC is paid $339 by my insurance carrier, but bills over $3000 per HD treatment rack rate
- You have no negotiating power to pay less than rack rate, and you can be bankrupted by "pay in advance no insurance negotiator D."

Remember, money is what drives D.
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