I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Traveling Tips and Stories => Topic started by: FindingNeverland on June 13, 2011, 09:32:06 AM

Title: How do others manage?
Post by: FindingNeverland on June 13, 2011, 09:32:06 AM
I'm a little frustrated right now so forgive my ranting. I thought we were supposed to be free to travel and all that despite being on dialysis. I thought we were supposed to have options? The only option I have is to pay out the a** for dialysis treatment because apparently no other state will accept out of state medicaid insurance, what a crock. What do they expect people like me to do? We either have to severely cut our trip in half or just plain cancel because we can't afford $500 a treatment on top of our vacation expenses. This was something we were greatly looking forward to, hubby and I were going to visit his family that he hasn't seen in two years because we've been busy with my medical stuff and his father and grandfather have medical problems that keep them from being able to travel as well. Not to mention it's Vegas and I could really use a vacation about now.  :stressed;

How do you guys manage to travel? Do you pay out of pocket or do you have insurance or secondary insurance that other clinics accept?
Title: Re: How do others manage?
Post by: aharris2 on June 13, 2011, 07:16:20 PM
Neverland, our Medicare pays out-of-state. We have had to pay a small amount for the attending out-of-state neph. We have also had to pay the full cost of dialysis when traveling outside of the United States, but it is nowhere near as costly as it is here.
Title: Re: How do others manage?
Post by: rsudock on June 14, 2011, 03:28:52 AM
When I traveled out of state I had private insurance as my primary and medicare as my secondary. I do have medicaid as well but like you said it doesn't work out of state.....

Hope you get this figured out soon!!

xo,
R
Title: Re: How do others manage?
Post by: St.Lucia-Dialysis on June 22, 2011, 07:54:47 AM
I can relate to needing a vacation FindingNeverland.  Having said that, we are happy to offer you dialysis for a week and accommodation in St. Lucia (no charge).  You would have use of a very nice 3 bedroom house overlooking the sea, transport to and from dialysis and your dialysis treatments included.  There is room for your husbands family also.  Sorry we cannot afford airfair.  The only condition is that it would have to be this summer.

I can be contacted via our website form.
Title: Re: How do others manage?
Post by: St.Lucia-Dialysis on June 22, 2011, 08:30:08 AM
I can relate to needing a vacation FindingNeverland.  Having said that, we are happy to offer you dialysis for a week and accommodation in St. Lucia (no charge).  You would have use of a very nice 3 bedroom house overlooking the sea, transport to and from dialysis and your dialysis treatments included.  There is room for your husbands family also.  Sorry we cannot afford airfair.  The only condition is that it would have to be this summer.
Title: Re: How do others manage?
Post by: Ken Shelmerdine on July 07, 2011, 10:39:32 AM
FindingNeverland you are keeping us in suspense. What a fantastic offer from St. lucia! well did you take it up? please tell us.
Title: Re: How do others manage?
Post by: yliebert on August 08, 2011, 09:00:40 PM
We travel quite a bit in the US for work and my Hubby has had dialysis treatments at centers in Chicago, Washington D.C., and New York.  They were all fully covered by medicare.  His center would call ahead and arrange everything.  Now he is on nocturnal home hemo with a a NxStage cycler.  We travel with it and Nxstage delivers the fluids direct to our hotel rooms.  You need to speak with your social worker about the options.
Title: Re: How do others manage?
Post by: Bill Peckham on August 08, 2011, 09:47:20 PM
That is an awesome offer St Lucia - hope it works out (I hope I can make it down some day too)


Want to note that FindingNeverland is talking about Medicaid. There are 50 different Medicaid programs and not one of them (as far as I know) reimburse out of state medical charges.


This is a big problem for about half of all dialyzors. About ~10% of all US dialyzors rely on Medicaid as their primary payer and they would have to pay the entire cost of dialysis out side their home state. An additional ~40% of all dialyzors (about half of those with Medicare primary) are Medicaid secondary. If they travel out of state they have to pay the 20% not covered by Medicare.


I've been aware of this issue for a while, I've dedicated a life insurance policy to create a fund to pay the way for Northwest Kidney Centers Medicaid patients but I'm afraid that doesn't help anyone today. It is an unfair situation.


There is a way around it though - if you switch to using NxStage you'll still be your home center's  patient when you travel. You can go anywhere in the US and have your treatments in your hotel or where ever you're staying and the whole time it's nice and legal because your home center is billing Medicare.
Title: Re: How do others manage?
Post by: noahvale on August 09, 2011, 09:15:00 AM
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Title: Re: How do others manage?
Post by: jbeany on August 09, 2011, 01:51:58 PM
I assumed he was referring to the fact that Medicaid refuses to pay for anything out of state.  It limits any patient from ever being able to travel from their home state, for any reason, unless they can afford to pay out of pocket.   Which they can't, or they wouldn't qualify for Medicaid.  So forget traveling to see family, go to funerals, weddings, graduations......the list goes on.  Just one more way to take a bit more dignity from the poor - their own personal tether.
Title: Re: How do others manage?
Post by: Bill Peckham on August 09, 2011, 10:06:29 PM
I assumed he was referring to the fact that Medicaid refuses to pay for anything out of state.  It limits any patient from ever being able to travel from their home state, for any reason, unless they can afford to pay out of pocket.   Which they can't, or they wouldn't qualify for Medicaid.  So forget traveling to see family, go to funerals, weddings, graduations......the list goes on.  Just one more way to take a bit more dignity from the poor - their own personal tether.

Exactly. Well said jbeany. It doesn't save the state any money by having this policy. If people don't travel they stay home and the state supports 156 treatments a year, why not pay the same amount and allow travel? It's unfair because it is enforcing an unnecessary restriction on people with no where else to turn.

It may even save money to allow travel because what happens now is people skip treatments so they can go to a funeral, a wedding or have a weekend away. The odds are the skips lead to expensive hospitalizations. Better to to accommodate travel.

This also goes for Medicare. Medicare should accommodate dialyzor travel abroad - at least reimburse for what they would pay if person stayed home.
Title: Re: How do others manage?
Post by: noahvale on August 11, 2011, 03:53:11 PM
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Title: Re: How do others manage?
Post by: rsudock on August 11, 2011, 05:19:47 PM

On a larger scope, it is not a state's responsibility to guarantee a dialysis patient, or any patient for that matter, a vacation.  States are meeting their obligation to provide a safety net for its citizens who have no other means available to pay for medical treatment.  If anything is not fair, it is life.  None of us asked for kidney failure, but we have it and must deal with it to the best of our ability and circumstances.


Yes we should really thank our lucky stars that doctors/dialysis clinics are kind enough to accept us poor smucks who have medicaid...let's not burden them any further with the expectation to have a somewhat enjoyable life...we should be grateful they give us any kind of care and should accept our lowly situation and lot in life....

Really shocked Noah at your response...seems super insensitive to me...who side are you on?
Title: Re: How do others manage?
Post by: Bill Peckham on August 11, 2011, 07:00:28 PM
It doesn't save the state any money - if people don't travel the state pays so why not let people submit a claim, the other state isn't involved at all.


Some states don't reimburse the 20% for people who are Medicaid secondary and those dialyzers would be out of luck but most states do reimburse the 20% so why not let people submit a claim for the exact same amount the state would have reimbursed if they had stayed at home?


A lot of units can and will support visitors when there is a sudden trip required, maybe, maybe not but reimbursement shouldn't be the deciding factor. But more than that vacations are a part of life even for people who are poor and sick and for those of us who are just sick. I say Medicare should accommodate foreign travel - reimburse up to what they would have paid had you stayed home - and Medicaid should do the same.
Title: Re: How do others manage?
Post by: kporter85db on August 11, 2011, 08:02:41 PM
I've been part of the Medicare system for the past year and now Medicaid since I started dialysis last month. Since these systems use other peoples money to pay for my care, I am very thankful for what they do cover. I don't feel I am owed anything, but am thankful for the help they give me.

That's just how I see things.
Title: Re: How do others manage?
Post by: chatrbee2 on August 11, 2011, 08:12:57 PM
But if they are paying for dialysis treatments anyway and not travel expenses.  You think its okay to be bound to one facility without the rights to travel?  What difference should it make what facility they pay it too?!?!   I help transport my father to dialysis, no one pays us anything for transportation to and from the facility, so it wouldn't be any different with them not paying for me to travel and/or taking him to a different facility it the chance came up.  In his case it most likely won't, but I should have the right to travel and if we did.  He'd have to go too....so that rule also confines caretakers....who work and pay into your care as well.
Title: Re: How do others manage?
Post by: noahvale on August 12, 2011, 07:46:57 AM
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Title: Re: How do others manage?
Post by: noahvale on August 12, 2011, 07:58:34 AM
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Title: Re: How do others manage?
Post by: Bill Peckham on August 12, 2011, 07:51:40 PM
I'd say it should be the government's intention to provide services that meet the needs of its citizens and support their aspirations.


Most first world countries, that are not the United States, have reciprocal health agreements (here (http://www.medicareaustralia.gov.au/public/migrants/travelling/index.jsp), here (http://www.travel-insurance.net/info/european-health-insurance-card.php)). The Dialysis Manifesto (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/the-dialysis-manifesto-8-from-the-uks-10-point-declaration-of-principals-defends-travel.html) is a UK document, #8 from the UK's 10 point declaration of principles defends dialyzor travel.


It wouldn't have to cost money - cap reimbursement at the usual amount. As I said, if people live in states that choose to fund Medicaid at a minimum rate - Mississippi - they'd be out of luck. People are meant to dialyze to live not live to dialyze and for most Americans who are physically able 'living' means taking a trip to visit relatives or the shore or the lake.






Title: Re: How do others manage?
Post by: noahvale on August 13, 2011, 06:07:15 AM
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Title: Re: How do others manage?
Post by: Bill Peckham on August 13, 2011, 08:34:22 AM
I'd say it should be the government's intention to provide services that meet the needs of its citizens and support their aspirations.


Most first world countries, that are not the United States, have reciprocal health agreements (here (http://www.medicareaustralia.gov.au/public/migrants/travelling/index.jsp), here (http://www.travel-insurance.net/info/european-health-insurance-card.php)). The Dialysis Manifesto (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/the-dialysis-manifesto-8-from-the-uks-10-point-declaration-of-principals-defends-travel.html) is a UK document, #8 from the UK's 10 point declaration of principles defends dialyzor travel.


It wouldn't have to cost money - cap reimbursement at the usual amount. As I said, if people live in states that choose to fund Medicaid at a minimum rate - Mississippi - they'd be out of luck. People are meant to dialyze to live not live to dialyze and for most Americans who are physically able 'living' means taking a trip to visit relatives or the shore or the lake.

We have fundamental differences in our beliefs on what should (or in my case, should not) be required of government.



I'm saying that public programs should do a good job providing their service, especially when people are locked into that service - garbage collection, DMV licensing, health insurance - while you are saying people should accept what is publicly provided as is and vacations, or travel generally, is a luxury the state should has no business supporting. Have I correctly stated your position?
Title: Re: How do others manage?
Post by: noahvale on August 13, 2011, 11:01:37 AM
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Title: Re: How do others manage?
Post by: Bill Peckham on August 13, 2011, 11:30:16 AM


I'm saying that public programs should do a good job providing their service, especially when people are locked into that service - garbage collection, DMV licensing, health insurance - while you are saying people should accept what is publicly provided as is and vacations, or travel generally, is a luxury the state should has no business supporting. Have I correctly stated your position?

I don't equate healthcare to garbage collection.

However, I am saying that vacation travel for the ill is not the responsibility of government.  Providing a safety net for healthcare and treatment, and ensuring that standards of care are met, absolutely.


I don't think anyone suggested that vacation travel was a government responsibly. The issue is healthcare portability. Once the decision is made to extend the coverage why should venue matter? There is nothing to compel the value of coverage, only that it is venue neutral.

I think one issue here is treating people with a chronic illness no different than people with an acute illness, acute and chronic illnesses require very different care approaches. Once the decision is taken to organize the provision of dialysis in such a way that over 80% of the people who require dialysis must have their treatments paid in full or in part by public insurance schemes, then the expectation should be that the public insurance should promote the long term health, rehabilitation and independence of people who require dialysis.

To a large degree Medicare's Conditions for Coverage do just that, but reimbursement rules and incentives that make sense for people requiring acute healthcare are often inappropriate for people who require chronic healthcare; those rules and incentives can end up undercutting the CfCs.
Title: Re: How do others manage?
Post by: rsudock on August 13, 2011, 02:47:31 PM
It just seems to me that the US should work on being able to transport medicaid state insurance across state lines. I think about this issue in more of an emmotional point of view. Think about people who have been ill their entire lives. They were born with bad kidneys, on dialysis since they were 3 years old, never really had a chance to get through school, earn a college degree, or even find a partner in life....living with this disease has already severely impacted who they are...are we really saying on top of all this, they can't enjoy one vacation because they have medicaid?? Yes life is unfair but peoples' outlook on life and health is better if they have something to look forward to and enjoy....I am not saying the state should pay for some lavish vacation or anything like that....but if they want to go see their mother who lives in another state or siblings...why not?  MONEY should not determine happiness...unfortunately in America that is our bottom line.



Yes we should really thank our lucky stars that doctors/dialysis clinics are kind enough to accept us poor smucks who have medicaid...let's not burden them any further with the expectation to have a somewhat enjoyable life...we should be grateful they give us any kind of care and should accept our lowly situation and lot in life....

Really shocked Noah at your response...seems super insensitive to me...who side are you on?

So, because I don't believe that it is government's responsibility to make life "fair" or even "somewhat enjoyable" (which is very subjective in itself) means that I'm not on the side of patients? 


It is my hope that indeed you are on the side of the patients...but the original poster was asking for advice about what to do since medicaid doesn't cover the 20% out of state....your comment didn't really seem to be of help to the poster...so I have to wonder what was your intent? If it were me I would have been reading the screen like, "uumm okay thanks?!"   :urcrazy;

Title: Re: How do others manage?
Post by: chatrbee2 on August 14, 2011, 03:34:45 PM


I'm saying that public programs should do a good job providing their service, especially when people are locked into that service - garbage collection, DMV licensing, health insurance - while you are saying people should accept what is publicly provided as is and vacations, or travel generally, is a luxury the state should has no business supporting. Have I correctly stated your position?


I don't equate healthcare to garbage collection.

However, I am saying that vacation travel for the ill is not the responsibility of government.  Providing a safety net for healthcare and treatment, and ensuring that standards of care are met, absolutely.

But the government doesn't pay transportation at all for most.   All one asks is standard of care while living life. That can be provided from anywhere it's just another form of control.   I can go anywhere and get medical treatment.  That's all dialysis people are asking....we have the technology and the ability.  Medicare also does not believe after 5 years they need to pay for someones oxygen........

Title: Re: How do others manage?
Post by: Ken Shelmerdine on August 14, 2011, 04:44:10 PM
All this medicare, medicaid, interstate dialysis confuses the hell out of me as a Brit. All i know is that I can dialyse anyware in the UK at no cost to me. All I have to do is tell my dialysis NHS holiday coordinator giving 2 months notice and the hotel we want to stay at and she sorts it all out. There are also plenty of dialysis centres in Europe and Mediterranean holiday destinations which have reciprocal agreements with NHS. Up to now I've been to Italy, Majorca and in October Portugal and the D has not cost me a penny.

Our NHS has many faults but thank god we Brits don't have to go through the hassle and stress of dealing with medical insurance companies!
Title: Re: How do others manage?
Post by: MooseMom on August 14, 2011, 05:00:48 PM
Our NHS has many faults but thank god we Brits don't have to go through the hassle and stress of dealing with medical insurance companies!

What???????? :o :o :o  You mean you don't believe in liberty and freedom?  Oh dear God...you must be a (gasp!) socialist!  Oh, the horror, the horror!!!
Title: Re: How do others manage?
Post by: monrein on August 14, 2011, 06:35:51 PM
In Ontario, our provincial health insurance will reimburse the patient $210 per treatment, I guess that's what's allotted here.  The Kidney Foundation offers interest-free loans to patients who travel and when OHIP reimburses the patient, the loan can be re-paid.

Of course, all this travel business is still expensive since dialysis in the US for example can cost up $400 to $1000 per session (according to KF literature) and the patient will have to cover the difference. 

There are usually reciprocal arrangements between provinces within Canada and way back when I used to travel between Ontario and Nova Scotia I paid nothing.

Anyone from here dialyzed in another province recently?
Title: Re: How do others manage?
Post by: Bill Peckham on August 14, 2011, 07:03:15 PM
In Ontario, our provincial health insurance will reimburse the patient $210 per treatment, I guess that's what's allotted here.  The Kidney Foundation offers interest-free loans to patients who travel and when OHIP reimburses the patient, the loan can be re-paid.

Of course, all this travel business is still expensive since dialysis in the US for example can cost up $400 to $1000 per session (according to KF literature) and the patient will have to cover the difference. 

There are usually reciprocal arrangements between provinces within Canada and way back when I used to travel between Ontario and Nova Scotia I paid nothing.

Anyone from here dialyzed in another province recently?


That's about what Medicare in the US pays out per treatment (80% of $230 to $250) and so we'd face the same sticker shock if Medicare reimbursed for foreign travel but $200 would help a lot people who always wanted to see Paris, see Paris. One way travel could be supported outside changes to reimbursement would be if units struck reciprocal agreements unit to unit.

If American dialysis providers agreed to charge all Canadians at the US Medicare allowed rate and in return Canadian units agreed to charge Americans at the Canadian equivalent rate both groups of patients would have greater access to travel while using incenter dialysis. So a Canadian visiting Seattle would be charge 100% of the Medicare allowed rate of ~$230, they would pay and when they got home they'd get reimbursed ~$210.  And vise versa. Why not?
Title: Re: How do others manage?
Post by: rsudock on August 14, 2011, 09:00:09 PM
Our NHS has many faults but thank god we Brits don't have to go through the hassle and stress of dealing with medical insurance companies!

What???????? :o :o :o  You mean you don't believe in liberty and freedom?  Oh dear God...you must be a (gasp!) socialist!  Oh, the horror, the horror!!!

 :rofl;
Title: Re: How do others manage?
Post by: Ken Shelmerdine on August 15, 2011, 05:17:09 PM
Our NHS has many faults but thank god we Brits don't have to go through the hassle and stress of dealing with medical insurance companies!

What???????? :o :o :o  You mean you don't believe in liberty and freedom?  Oh dear God...you must be a (gasp!) socialist!  Oh, the horror, the horror!!!

 :rofl; :rofl; Oh the irony1
Title: Re: How do others manage?
Post by: amanda100wilson on November 29, 2011, 07:31:53 PM
I fail to understand what some of you are saying.  No one is asking for Medicare or Medicaid to pay for a holiday, or travel for that matter.  All people like Bill are saying is that you require dialysis whether you do or you don't travel, so why not have dialysis paid for when you are away from home as well as when you aren't? 
Title: Re: How do others manage?
Post by: Rain on November 30, 2011, 04:41:54 AM
I've been able to get dialysis in B.C but got denied when I wanted to go to Quebec city twice.  My transplant coordinator told me to give up, she has not seen quebec accept any ontario patients.
Title: Re: How do others manage?
Post by: Riki on November 30, 2011, 07:59:57 PM
I went to Ottawa from PEI last year with no trouble.  When I go to New York, I pay $400US per treatment, and PEI reimburses $495Can per treatment, so it generally works out that I get it all back.  I never have any extra medications, like arenesp or anything like that.  I get it either before I leave, or after I get back, cuz I'd have to pay for it there.  I take bandaids with me too, cuz you have to pay for them as well
Title: Re: How do others manage?
Post by: Ken Shelmerdine on December 01, 2011, 03:19:48 AM
I can relate to needing a vacation FindingNeverland.  Having said that, we are happy to offer you dialysis for a week and accommodation in St. Lucia (no charge).  You would have use of a very nice 3 bedroom house overlooking the sea, transport to and from dialysis and your dialysis treatments included.  There is room for your husbands family also.  Sorry we cannot afford airfair.  The only condition is that it would have to be this summer.

This thread started way back in June and despite all the the responses from IHD, FindingNeverland has never added any further contribution apart from her first post. There was the offer from St. Lucia and I for one am interested to know whether or not you were able to  take up the offer so please Neverland a bit of feedback would be nice.  :thumbup;