I thought it would be interesting to cut and paste some posts from a kidney disease forum. Entries having to do with health insurance are listed in random order. Some of the formatting is a bit off because of the nature of the board.
My son is a mutation so there was no early warning. Point in fact is just this year his employeer decided to drop the insurance for drug coverage. Privately I think my son was the biggest reason that it was dropped. Im sure to be an employer paying insurance premiums for him is skyhigh. So now after 5 years of a successful transplant, he will have no insurance for his drugs. He falls between the cracks. Hes not dirtpoor, yet his income is above poverty level.
I dont think you realize that you are in a very fortunate position. I know people who dont even know how they are going to buy groceries this month let alone come up with the kind of money we are both talking a bout. Many many people dont even have transplants done because they dont know how they would pay for the drugs after Medicare leaves off. Several people on this forum and another one that I am on were refused transplant because of their inability to prove that they could pay for their drugs after the operation. Many people dont have jobs with good benefits or friends with a lot of money.
She needs to contact the different companies. And yes, some transplant centers won’t do a transplant if you can’t prove that you will be able to afford the meds after the Medicare runs out in 3 yrs.
These medications are so expensive that we fall into the “donut hole” very soon. Then we have to pay our own way through the donut hole, at least thousands of dollars before catastropic coverage kicks in.
I’m trying to make what pills I have left last–and this makes me
angry], I think I will go to my nephrologist and ask him if he will
just agree to prescribe pain meds for, say, six months until I can get
some other issues out of the way. The only other thing I know to do is
to go “doctor shopping” [oh no! they say that's a crime on the
news-grrr] [which I cannot afford] and just tell them straight up, “Yep,
I’m drug seeking. I’m in pain, it’s real, will you help me or not?”
[Which probably won't be very effective.]
Sorry so long but I really wanted to explain the whole thought process.
I know I sound like a druggie or something but, the fact is, I know
something about “druggies” and that is not my problem. I just want to
be able to function for as long as my kidney function will allow me to.
If there is any way possible he should try to keep his coverage. As he has a pre existing condition and it will be next to impossible to get coverage and the programs that are set up to help have very Little funds and the process of just getting signed up can be months. I wish I had better things to tell you. But this is why my brother could not get his transplant because he had no way of paying for his rejection medications after medicare stopped paying . This is a area that we need to really try and get new laws passed.
i was a nurse for years so i understand the medical side of it, but it was too expensive to keep up with the labs and dr. visits.
If she is on Medicare then when she receives a transplant the meds will automatically be covered through Medicare for three (3) years not 18 months. Then she will need to find another way to pay for her antirejection drugs which can be quite costly…some say between $2,000 and $4,000 per month. If she is not on Medicare and has no way to pay for the medications then the transplant center may not approve her for listing as a transplant will likely not be able to survive without the necessary meds. Each center has their own protocol regarding requirements for insurance, weight, medical issues etc. so tell her to “shop around” for a center that will be willing to take a chance on her.
I got my Medicare ahead of my PKD diagnosis, so since it is not transplant-related I get to keep it as long as my ‘underlying condition’ exists. Irony is, of course, that it’s likely that PKD is the cause of the heart valve stuff that has given me a lot of trouble and got me covered. The transplant question -kicking folks off based on an arbitrary time limit- makes no sense.
I’m 3 and 1/2 years post Kidney transplant and my
Medicare coverage stopped at the end of the month in
which I passed the 3 year mark. It was amazing how
hard I tried to find out in advance if this would
happen –I thought the transplant social workers
would know about this but they told me I wouldn’t be
dropped –and yes I was dropped. I have no other
reason to be on Medicare at this time so now my
transplant drugs are being covered by my regular
insurance. I also was dropped from the other
Medicaare covrerage and will have wait until I’m 65
to have it again (or of course I could go back on
dialysis or become disabled in some other covered
way) My expenses have really gone up since Medicare
dropped their coverage.
I heard something else in the CSpan interview of Dr. Satel and her donor. Is it true, as they said, that Medicare stops paying out the benefits for transplant drugs after the 3rd year??
Now that sounds positively cruel and counter-intuitive. From what was said, Medicare will pay for the transplant expenses, but only
allows 3 years for the anti-rejection drugs. They will pay for a return to
Anyone familiar w the ins and outs of Medicare on
So then I can assume when they said I don’t have prescription coverage, that means I don’t. This is what I had when I was working, and since my creatinine had spiked, I was afraid to try to buy another kind and find out down the road that they don’t cover pre-existing conditions. I am scared about the meds after Medicare runs out.
I am going to a free clinic because when I left my job I couldn’t
afford the insurance. now, since my doc is sure I need the fistula, I
am beginning to worry if the clinic will pay for that surgery and/or
dialysis. I think when they schedule dialysis, they help you get on
medicare, don’t they?
I guess I need to talk to the director at the clinic about all of
this. I sure don’t want the dialysis, but, I guess I will have too if
I want to survive!!!!
Anyone with any info, I would greatly appreciate it. I guess I’m
a “dummy” when it comes to knowing about all of this!!
Now I wish I waited because I will soon lose my Medicare health coverage and will
have to apply for group health insurance. My question: I’m currently
a medical assistant student and I will be moving to another state and
looking for a job in a few months. Does anyone know if an insurance
co. be able to access my PKD ultrasound and diagnosis? (I’m
considering lying) I haven’t had any treatment since the diagnosis.
It’s a tough choice to have a teen age daughter tested by ultrasound
(OR NOT) for PKD. There’s decisions to make about family planning,
blood pressure monitoring, and UTI prevention. However, you don’t want
your child labeled as a “pre-existing condition” on insurance, etc.
Meanwhile, I’ve been hospitalized twice times this year with kidney
infections. The problem is that I don’t have insurance, can’t get
insurance, don’t qualify for anything tht I can think of and never
have enough money to go to the doctor.
Anyway, my point in case I haven’t made it, is that I NEED medical
care. Not just for the surgery but I need to be able to see a doctor
before it becomes a life threatening situation. My nephrologist would
LOVE for me to be able to have regular creatinine tests, 24-hour,
etc. but I just can’t swing it.
SOOOOO, does ANYBODY know ANYTHING about applying for straight up
Medicaid in the state of Georgia? I have been online all evening and
I can’t figure it out. [And, I'm not stupid. How is it that so many
people manage to get this stuff?]My family is stretched to the limits
of their ability to help but they keep saying, “There is no way, in
this country, you would be left to die in the streets without being
able to get help.” Oh yea!! Somebody show me. Please. [she adds
I’m going to try again tomorrow but for now I thought I’d check with
some “experts”. Sure hope someone has some ideas.
You can’t get on MEDICARE until you qualify for SSI or SSD, but MEDICAID is different. Medicaid is the state run health care for low income people. You can probably qualify based on the bills you have from hospital visits. I am surprised that the hospital never offered to help you with that.
What a fool I was. I first received Medicare due to dialysis back in 1982. I refused my work’s insurance… thinking Medicare would take care of everything. Well, of course, who knew there was a 20% co=pay. But, in NY, was able to get a Medigap insurance, which was still cheaper than what the insurance at work would have cost me….still dumb, cause once I left on disability, I could of still had the work’s insurance… ..especially, once I moved down here to FL. Seems Fl, doesn’t recognize anyone under the age of 65 for a Medigap insurance policy…so I am stuck paying all my 20% and deductible for every time I go into the hospital.
If they just throw him out on the street I don’t
know what our family will do for health/life insurance. As most of
you know this disease makes him and our children uninsurable.
I hate to bear more bad news, but my father is fighting the Medicare battle. He basically has been told he will not get a kidney since he can not show proof of being able to pay for the anti-rejection mediciation after the transplant. He has private insurance, but he was told by Blue Cross that it does not cover prescriptions. He has only Medicare to rely on and they are not willing to pick up the cost for the anti-rejection meds. They will pay the difference for the transplant, but not the meds.
I did not have the money, strength, time, or energy to play
medication roulette again.
No, medicare part B does not pay for the drugs, unless you take Part D with the
additional premiums. You can, however, get assistance, for the Part D premiums
if you are income eligible.
I just had my transplant in July and I was under the same impression, until I read
the “fine print” and have talked, in depth, with my social worker, and others who
have had transplants before me.
Does this sound right?
The hospital financial coordinator told me that you can’t apply for Medicare until the day of the transplant surgery. The surgery costs
about $130,000, of which $26,000 is not covered by Medicare?
The prescriptions cost $4,000 a month of which $1,000 per month (25%)
is not covered by Medicare?
Had breakfast with a Canadian friend whose American wife was turning 65 and thus becoming eligible for Medicare. So he asked me about the Medicare program. I began to explain Part A and Part B and Part D (he wanted to know what happened to part C? Is there /was there a part C?? Couldn’t answer that). Talked about Medicare supplemental (versions A through K) and Medicare advantage programs and redoing part D each year.
I wished I could have taken a picture of the shocked and speechless expression he had!
Yes, it can be very complicated and there are many people confused about it all. (I’m often confused about it!)Unfortunately some of those people are those providing guidance..pharmacies, social workers, elder counselors, and sometimes even the Social Security workers filling out the forms. It’s important you understand what you’re entitled to, to the point you can push back when someone tells you different.
Hi All, My son had a transplant five years ago and has been doing
very well. He has a good job with good insurance. Tonight he dropped
the bomb at his sister and I that he was losing his drug insurance.
His coverage remains the same, minus his drug ins. Im convinced that
he is one of the reasons for the loss since his drugs are so
expensive. I don’t mean to sound mercenary but to all of you out there
who are contemplating a transplant please be aware that its expensive
and after the transplant the drugs for the rest of your life are very
expensive also. Now what do we do? I’m very scared and more then a
little angry. So this has turned into venting along with asking for
advice. He contemplated updating his resume’ but it really wouldn’t
help since the drugs are so expensive and he couldn’t make enough more
to make up the difference plus he loves his job. I’m going to make
some phone calls tomorrow am but does anyone else have any good ideas.
Right now I’m too agitated to think clearly. Thanks,A PKD Mother
After reading everyone’s posts, I just wanted to point out …
THIS is why so many American citizens get lost in our bureaucratic health system. I am a (relatively) healthy thirtysomething who works in the IT field and is pretty savvy when it comes to small print … and this STILL sounds like a spaghetti bowl of red tape.
Medicare or Medicaid … Part A, Part B, Part D … primary or secondary … but only if you meet work qualifications … for a limited time … unless you qualify for disability … and you apply on a Tuesday when the moon is full and you stand on one foot singing, “Rocket Man” … come on!
If it’s confusing for us … can you IMAGINE what it’s like for our parents and grandparents? By the time I need dialysis … which I hope is 20 years from now … I’m going to have to give a DNA sample just to apply. This is ridiculous!
I don’t mean to sound unsympathetic as I say
this, so laugh with me, please… you’ve only
been turned down once on each applicaiton? LOL!
Man – you’re just getting started. Many, many
people get turned down two or three times before
they get in the program. Seems both very
inefficient and CRUEL, but the system isn’t as
efficient as it should be. The worker-bees buzz
around, and very often it’s a game of endurance.
Hate to say it, but it’s true.
From some of the things I hear other Americans say regarding their
medical coverage and problems I just say thank God I live here. I was
told by some people that most of your insurance companies will cut off
your transplant drug coverage after a few years.
Welcome to the group. I wanted to suggest that your son should not be tested until there is a need to do so i.e. symptoms. If he is diagnosed with PKD it will follow him the rest of his life, causing significant impact on his ability to get life insurance and health insurance. There have probably been some past discussions on this (though I get confused what’s been said where, since I am on another list also). I had no trouble getting life insurance until I was diagnosed with PKD. Since then, I have been turned down so many times, I have given up.