Health Care Series: This will make you weep

Promoted. Originally posted 2009-06-25 21:03:17 -0400. -- GH

Come over here for a moment. I’m going to lift the curtain on a private world, a world I hope you’ll never have cause to inhabit. Take a glance at this world and the people in it. This is the world of dialysis patients and their families.

What you are about to read is not at all uncommon in the dialysis community. We (dialysis patients) often give each other this sort of advice. I am partly prepared, when my own time comes, to divorce the one I love and go on Medicaid myself if I have to. It may be the only way I can get health care once I max out our employer insurance, the one with the $2 million cap.

The names I use here are real. The people are real. The words are their own, appeared on a dialysis patient email list, and are quoted with permission. Their zip codes, also used with permission, are real. Their stories will make you rage, and break your heart.

I want you to meet Juanita. She’s a woman just a few years older than my own age of 49, too young to have Medicare due to age. Like many ESRD (kidney failure) patients, she is unable to obtain Medicare supplemental, or "Medigap", insurance in her state. Most states don’t have plans that ESRD patients under 65 can subscribe to. The law states that insurers have to offer Medigap plans to everyone who qualifies for Medicare, regardless of anything else; the one exception is that if you have Medicare solely due to ESRD, they don’t have to cover you, and most won’t.

So I want you to read Juanita’s own words and find out what our system requires of her. Remember, this is Medicare we’re talking about.

I just spoke to the person who handles the insurance information for transplants. She needed my insurance info before my transplant information/education day on July 8th. I told her I had Medicare and Prescription D coverage. She said, "You don't have any supplemental insurance?" I told her no that I tried but no one gives you that if you have been diagnosed with ESRD. She then told me that might be a problem in getting a transplant or getting any evaluations because I'd be responsible for paying 20% of the cost! I don't have that kind of money just receiving disability. I can't even pay all the bills from what is not covered by Medicare for my surgeries or dialysis.

What do I do?? Please help or give me suggestions. I am so depressed now. I might as well cancel and just stay on dialysis for what is left of my life. I feel as if there is no hope for a transplant now. I guess only the rich get it. Us ol' po' folks don't stand a chance. Someone figured our lives aren't worth it. Sad and very depressing.


Zip code 28659

I want you to meet Sean. Sean’s a young-ish man, with a wife and family. Sean experienced the same thing Juanita did, and he took the route that many of us have to take in order to deal with the system; he deliberately became indigent. Our system left him no other reasonable choice.

I was told the same thing when I went for transplant evaluation, that I couldn't be considered for a transplant with Medicare only. I was amazed that they weren't aware that ESRD people couldn't get supplemental coverage, but they weren't. Even if I had been able to pay the 20%, they said I couldn't get listed without other insurance. They said my only options were to obtain employer coverage (basically impossible) or qualify for Medicaid, which would then be my secondary insurance.

Needless to say, I chose Medicaid. My wife quit her (non-benefitted) job so that we'd have no income other than my disability, and we went down to the welfare office and got on Medicaid and all the other benefits that poor people get. It's really senseless, but there wasn't any other way to do it. On the plus side, when you have both Medicare and Medicaid, Medicaid picks up the Medicare premiums, and copays for pretty much any drugs are in the $1-$3 range. Also, there are no medical bills for anything, ever- they know if you have Medicaid, there's no way you can pay, so they don't even try.

So that's probably your only option- see what the qualifications are for Medicaid in your state, and try your darndest to meet them. Good luck,


Zip code 01007

An awful lot of dialysis patients are on Medicare. That would be most of us, in fact, no matter how old we are. Medicare is great at covering dialysis. Not so great for covering transplants, but great for covering dialysis. Dialysis is a way to stay alive, but it's no way to live.

And yet I see these stories play out again and again. Juanita’s life will be a life much shortened from what it could be unless she goes on Medicaid. Chances are she can’t, though, because her disability check is considered to be too high an income to let her qualify.

If she were married, she’d probably have to get divorced. I understand that nowadays the authorities are really cracking down on people who divorce for medical reasons and are considering them to still be together (and have community property together, too, which matters) if they do not actually separate from each other. They're considering them to be the same as married. So not only do many have to lose their marriage licenses, they may have to live apart from their sweethearts, too. This is exactly what the future likely holds for me, since there’s a $2 million lifetime cap on our insurance. If I want to stay alive and be able to afford care, I’ll need to become indigent myself, and that means becoming unmarried. Like I said, this is no way to live.

This is why, when these emails came through my inbox, I wrote to Juanita and Sean to ask their permission to use their emails. Here’s a bit more from Juanita about her personal situation:

Even though I barely make ends meet month to month, I am over the income guidelines for Medicaid. I filed back in October for retroactive Medicaid for all the hospitalizations when I was initially in for kidney failure and congestive heart failure. I am still waiting to hear. When I call, I get "I'm working on it. But it looks like you probably will qualify." So that is also out.

I didn't foresee this and I am sure I am not the only one that didn't. I also didn't know that you had to have secondary insurance or Medicaid to get a transplant. Why aren't you told that up front before you get your hopes up?

If I sound frustrated, I am, but more, I am very discouraged right now. So I guess tomorrow I call and cancel the appointment. I can't see my daughter losing a day's work and expending the gas money just to be told what I was already told on the phone.

I hope this is a wake-up call for others who are contemplating transplants. Everywhere I checked for info there was never any mention of this.

BTW, I take care of my two granddaughters after school and during the summer. They are my pride and joy. They are 9 and 5. The oldest will be in 4th grade and the youngest starting kindergarten. So during the summer I also have to provide for them, too. And I do not qualify for any help with house cleaning, food stamps, or Medicaid. I'm in that gap---not enough to live on in today's economic condition but too much to qualify for anything. :(

You have my permission [to use my email]. I appreciate the fact you won't use my personal info except first name and zip. I have given up hope but did not tell my daughter. I thought I'd let the hospital tell her the bad news. I just couldn't believe it when I told them I had only Medicare and they said "That might be a problem because you'll be responsible for the other 20%." I have nothing but the Medicare income, which barely, and I mean barely (lucky if I have anything left at the end of the month after living expenses, medicine and other bills) $20 left.

I guess you have to be a member of the government, as the recent liver transplantee was, or a famous singer with lots of millions, to get a transplant. Just like usual, those of us with little matter little.

Thanks, River, for caring about all of us.


"Thanks, River, for caring about all of us." How could I not? I am one of "us". Even if I were not, I still would care, because I am human and all who are human are my kin. But these – these are "my people". There was a fair amount of further discussion on this particular board about this issue in the last couple of days. Heres’s some more from Sean.

Massachusetts also has guaranteed issue for insurance, and there are lots of companies that provide coverage. No health questions are ever asked. However, you're only guaranteed a policy if you don't have access to other insurance. Medicare is considered "other insurance", so this law doesn't help people who only have Medicare, and need a supplemental.

Medigap policies are available by law to everyone except those with ESRD; we're specifically excluded from the law, and no companies will sell those policies to us. So, for us, Medicaid is the only way.

If I wasn't married with an infant daughter, I'd be in the same boat as Juanita; my SSDI alone would put me over the income limit for Medicaid, and there would be nothing I could do. Even if I refused SSDI, Medicaid would include it as income because I'm entitled to it.

Juanita and Sean aren’t the only ones with financial issues. Here’s another (anonymous) patient:

How can we get these drugs if we don't qualify for Medicaid, but cannot pay for them. I get 100 dollars too much to qualify for extra help and because of that 100$ I have a 850$ pharm bill while I am in the donut hole. I need some help. Right now I am only taking about 1/3 of the Renagel that I should be taking and even that is making the finances tight. I have no money for my hobbies--- which I really need to keep my spirits up.

I take Renagel. It’s to help keep your phosphorus level in balance. Too much phosphorus in the blood due to not enough being excreted (as happens in renal insufficiency and especially ESRD), if not controlled by diet and medication, leads to things like bone density loss, brittle bones, and deposits of calcium in the muscle tissues, which hurts like hell. Renagel’s expensive, like most of the phosphate binders, and must usually be taken with every meal and snack.

Having supplemental insurance doesn’t always help. They may decide you’re too expensive to keep alive. Here’s a second anonymous patient:

Juanita, having secondary insurance isn't always the answer, I know I have it from when I retired from work, and it does help at times too, but then again it doesn't help as I have both congestive heart failure, diabeties and kidney failure. I have been air flighted to the hospital about 3 times with another heart attack and I recently got a notice from my insurance company that they were not covering one air flight because they didn't deem it was a necessary flight that it wasn't life threatening, but then what is considered necessary, when one cannot breathe and has to be put on a ventilator to breathe and the medical teams didn't think I would make it to the major hospital alive. So in the long run you did what you could do and afforded what you could, and I commend you for doing what had to be done with what you had to deal with. I pray things work out for you in the future, never give up hope for hope is what keeps so many of us alive.

This is not the first time I have seen this scenario on the dialysis boards, and it won’t be the last while our current system is in place. In fact, I know exactly what she experienced, because the first thing that the transplant program I’m with wanted to know about me was about my insurance. They wouldn’t schedule me for an evaluation or even for the transplant education class until they were sure that the insurance was in place and would cover a kidney transplant. I’m fortunate in that I have Charles’s employer group health insurance to cover a transplant, though that will go a long way towards maxing me out, just as the annual charge for dialysis is doing. I got evaluated and listed, because I have insurance other than Medicare.

One more bit from Juanita:

You can file for retroactive Medicaid here and if you are over your initial dedutible for the month, they will cover the balance. I filed in October for my hospital visits in August and September when I was first diagnosed. I have since forwarded all bills to them, per their request. I have called and called. I have had someone who works for the county and takes them to court for her clients call. "We are working on it." That was the answer 2 weeks ago. In 1 and a half months it will be a year since I first went into the hospital with kidney failure. And they are still working on my claim, even though I'm told I will probably qualify.

By the way, I am only 55 so I am on Medicare and have been for several years due to disability. At first it was for severe copd/heart disease.

I have thought through and checked through just about everything I can. Answered all insurance applications that come through for supplemental insurance, called companies, spoke to the social worker at my dialysis center yesterday. She was not encouraging. She said, unfortunately, that is the way it is. Others who have had transplants have had the same problems I am facing. I got so upset I had to hang up because I was crying to hard to talk any more. But she did suggest before that for me to keep my appointment for evaluation/consultation as they may have some ideas.

If Juanita is to cover the 20% of the procedure and all attendant costs that Medicare does not cover, she’s going to have to do more than put out a coffee can at the grocery store, but nobody holds nationwide fundraising drives to get money to fund kidney transplants for adults who cannot otherwise afford them. It’s a shameful thing when something that would give a middle-aged woman a good shot at another couple of decades of high-quality life is financially out of her reach because she has the wrong kind of insurance, the only kind she can obtain.

This is the U.S. health "care" system at work. There is very little care involved here, and less caring. Spend-down requirements for Medicaid say that the applicant has to live at poverty level and be eligible for state aid, or "spend down" until they are indigent and thus eligible. This means no car, or only a junker. It means little to no income. It means owning less than $2000 to your name in any form, including having no retirement accounts. That's what Sean means about "trying your damndest to meet the requirements", which he recommends to Juanita.

We treat dogs better than this.

By the way, if anyone (such as Juanita’s Congressional representative, for example) wants to get in contact with Juanita or Sean to improve the situation or to offer words of comfort and solidarity, please email me your name and contact info, and I’ll pass it along to the appropriate person or to both of them. I promised them I’d protect their privacy in this way and allow them to decide whether to make contact. Juanita, in particular, would like to hear from those who can understand what she is experiencing.

And this - all this - is why I am helping to organize a rally for single payer universal health care on Monday, June 29, in Tacoma, WA. It is why I intend to stand outside Senator Maria Cantwell’s office and sing "How do you solve a problem like Maria?", over a PA if I can manage it, because she’s trying to bamboozle Washington voters into thinking that the co-op suggestion is a public option. Those of us who have studied all the plans coming out of Congress know that it is far from a public option, and will kill real health care reform the way it got killed during the Clinton administration. We see the insurance industry brazenly going before Congress and declaring that they have no intention of stopping the practice of recission, whereby they take someone’s premiums until they get sick, and then drop them, keeping all their money.

I understand that the answer is an expanded Medicare-for-all, which is what we’d get with Congressman John Conyers’ HR 676. I understand that the answer is to put the taxpayers and the patients and the doctors and the nurses at the table, and kick the insurance industry out the door. What has been done so far is to give the insurance industry and other health care profiteers who have lobbyists with deep pockets not only almost all the seats at the table, but the opportunity to determine who comes in the door.

And being a pragmatist, I understand that we probably aren’t going to get to single payer health care this time around. For me, the public option IS the compromise. If President Obama doesn’t get presented a bill with a robust, Medicare-like public option, I hope that he will veto it rather than doing something by half measures. The mediocre is the enemy of the good.

For us, the people in the dialysis community, health care isn’t a luxury; it’s a literal matter of life and death. So are transplants.

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