How do others manage?

[FindingNeverland]

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. 

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?

[aharris2]

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.

[rsudock]

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

[St.Lucia-Dialysis]

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.

[St.Lucia-Dialysis]

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.

[Ken Shelmerdine]

FindingNeverland you are keeping us in suspense. What a fantastic offer from St. lucia! well did you take it up? please tell us.

[yliebert]

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.

[Bill Peckham]

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.

[noahvale]

^

[jbeany]

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.

[Bill Peckham]

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.

[noahvale]

^

[rsudock]

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?

[Bill Peckham]

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.

[kporter85db]

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.

[chatrbee2]

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.

[noahvale]

^

[noahvale]

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[Bill Peckham]

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, here). The Dialysis Manifesto 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.

[noahvale]

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[Bill Peckham]

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, here). The Dialysis Manifesto 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?

[noahvale]

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[Bill Peckham]

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.

[rsudock]

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?!"   

[chatrbee2]

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........