For all of you who have been sitting on the edges of your
seats about the whole Medicare Part D – drug coverage, let me be the first to
tell you that it sucks. It is a tangled
up bunch of conundrum; and absolutely no one has any answers.

“How do you know this?” you may ask. Well, back in the long ago time of the 20th
century President Lyndon B. Johnson signed into existence Medicare. This was created in such a manner that it
would cover not only the elderly, but anyone who’d had the misfortune to be diagnosed
with End Stage Renal Disease. This means
anybody who needed dialysis or a kidney transplant in order to remain
alive. Thank you, President
. Generally, Medicare kicks in 3 months after dialysis commences, and continues until
2 years post transplant.

And so far, Medicare has, quite literally, been a life

But then they changed everything around. And if, the elderly and disabled receiving
low cost drug coverage with great ease, sounds too good to be true, well then –
that’s because it is. Now, there are
about a million “plans” (another term for insurance company), each with their
own set of deductibles, co-pays, monthly fees, and formulary coverage. And if you, like me, are not a professional
in the world of insurance billing…then you are basically clueless.

When I first heard about all of these changes, I ran to the
insurance and billing coordinator at Kajsa’s hospital and asked her what I
would need to know. Mind you, this was
in September. She told me not to worry
about it, and that if I would bring her my paperwork she would do it all for
me. Cool, thought I.

November’s meeting came along and I asked our Social Worker
where the billing woman was. She was no
longer working there, is the only answer I received. So I asked what to do about this
changeover. She informed me that it was
OK. She was now going to handle all of
that. I breathed a sigh of relief and
checked the mail daily for my paperwork to arrive from the Department of Health
and Human Services. It arrived on
December 27th. Did I mention
that the arbitrary assignment big swap was scheduled for January 1, 2006?

The New Year came and went. Then Tuesday I tried to refill one of Kajsa’s prescriptions. I was greeted warmly by Robert (pharmacist) and then
informed that we would need to let him know Kajsa’s new ID, Group and BIN
numbers. Huh?

So I pulled out my paperwork from the DHHS. Kajsa’s new drug plan was with AARP. Did I read that correctly? My 2 year old is now insured by the American
Association of Retired Persons? Robert
said that they actually cover people of all ages, gave me a number to call and
wished me luck. I quickly found out that
luck was, indeed, required for contact with the AARP.

I called the number and dutifully followed all of their
prompts (although none of them were exactly related to my query), only to
arrive at a recording. And by the way,
it was more than obvious that this association is used to dealing with the
hearing impaired. They did not have hold
music, Muzak or cute little tidbits about their company. They had a quick repetition of about 5 random
notes played over and over again for 37 minutes. At the end of this I was directed to the
aforementioned recording. And what did
this recording say? Well, a very chipper
woman informed me that due to the overwhelming positive response to their plan,
no one was available to help me and I should try back later. Then I was hung up on…by a machine. I proceeded to try to contact them for the
next three days. I still haven’t reached

So I tried 1-800-Medicare. They cannot access this information. I retried the pharmacist. He
encouraged me to switch pans. I
contacted our Social Worker, who offered sympathetic support, but no actual
help. So I spent some time on the
Medicare website checking their formulary finder to try to locate a plan that
would work for us, and then recalled Medicare. They could change the plan, I was informed, but the change would not
take effect until February 1st. Furthermore, with the AARP, Kajsa’s medicine would cost our family $647.00
this month, as opposed to the $23.00 of most other plans. For those of you who know me, you can just
imagine the string of expletives that Kajsa’s been trying to imitate for the
past couple of days. So here we sit on
perma-hold, trying to figure out what in the world to do.

I contacted our pharmacist again. He told me that the company that had provided
Kajsa’s insurance pre 2006 does, in fact, have a Medicare branch. Well, I contacted these folks and was
transferred twice before someone told me that they have real live people who
will come to your house and explain things to you. My jaw still hurts from the speed with which
it dropped.  So, I called that line and left a message in
the hopes that someone will come by to help me figure out this craziness. Heck, they may even get here before I am able
to get a hold of anyone at AARP. Meanwhile, I’ll just sit around on my laurels,
enjoying my life of leisure.


14 thoughts on “SNAFU

  1. Hi, my husband is a kidney-pancreas recipient. Since his transplant I am now the Editor for Organ Transplant Support, Inc.’s monthly newsletter. We just did a piece on this. I can post it here, though long, it has numbers and Web addresses that hopefully will help you. I am so sorry about your experience. Feel free to contact me! I found you through Running2K’s blog from Moreena/Annika’s site…Here’s the article:

    News You Can Use

    Attention, Medicare recipients! Medicare Part D has already gone into effect as of January 1, 2006 (enrollment is extended to May 15, 2006). Part D includes many different plans for prescription drug coverage. Private insurance companies will offer these plans. Each company will have a list of drugs it will cover and you will need to choose a plan that best meets your current and future medication needs.
    Toward that end, it is important to remember a few things:
    Save all documentation you receive from Medicare. Try to attend a Medicare Part D seminar in your area to be better prepared and armed with the information you will need to make a wise decision. To find seminar dates and locations in your area, visit the Web site Click on Medicare Training and Events and scroll down to the map of Illinois (or whichever state that pertains) and click on your county. You will find a list of seminars in your area. If you are unable to attend a seminar, contact any of these organizations for assistance: SHIP (800) 548-9034; Healthcare Choices Resource Center (800) 789-0003, or Senior Help Line (800) 252-8966.

  2. Candace:
    Holy Cow!
    Thank you. Here I was wondering if I should post this since it sounded so whiny. But it appears to have paid off. Thank you so much for the information! I will be going over to that website post haste.
    I really appreciate this!

  3. Well, I went to the website, but it was specific to residents of Illinois. It has; however, inspired me to try to track down something like this for Arizona. I will try the phone numbers on Monday.

    Again thanks, Candace.

  4. Sorry about that, I did notice after I posted it that most of it was for Illinois. (I am more of a graphic designer than an editor, so you know! But I do the job!) Anyway, I am glad though that it might lead you in a better direction for your needs. I am truly sorry about your experience with all of it. I may keep this all in mind though for a future article, as I was unaware this could cause problems for our smallest and youngest of patients! Good luck to you and keep in touch!

  5. Holy Crapola, Rowan. I can’t believe–and yet I can–that they did this to you all. The government is more insane than ever. I am flippin’ hoppin’ p.o.’d for you–and I can swear like a sailor if it helps. But I am just really upset by this. You guys deserve better. Everyone does. And I hope you get your help, and your visit. SOON!

  6. Oh how I wish it was easier for you all. I will send out positive vibes that it will become so.

    You have made me realize that I want to phone up some of our candidates during our Canadian election and advocate for our health system.

    I love socialized medicine, even, when like here and now in my country, it isn’t perfect.

  7. Oh, this makes me quite furious. I’m so sorry you have to deal with this – as if you didn’t have enough on your plate already. Not surprising of course. The health care system in general is corrupt. Sure, we can blame the government as well. *sigh* I sure do hope that things can be resolved easily from here on.

  8. Candace:
    I will definitely keep in touch. It is always good to be able to talk with people who can relate. And, you know, you can always use our family for an article. I’m all about public awareness.
    Thank you for your support. It bolsters my resolve to know that others are pulling for our success.

    I heart Canada! The funny thing is that Medicare is about as close as the US gets to socialism. Unfortunately, people here are still so afraid of “those commies”, that it keeps getting cut and revised. I think we would all benefit from taking a clue from our comrade lovin’ neighbors to the north.

    I would love to able to blame the health care system or the government for all of this. But, honestly, I believe it’s truly a cultural problem. People sue doctors for uneccesary proceedures that they demanded because somebody on TV said it would be a good idea. So the insurance companies raise their malpractice rates which makes the doctors more vulnerable to the demanding patients who may later sue them for something that the docs never wanted to do in the first place. I think that healthcare reform is just the tip of the iceburg. We need a societal reform for anything to ever be effective.
    Sorry about the convoluted rant, but I’ve thought a lot about all of this.

    I think you put it perfectly, Miriam, when you wrote *sigh*. But I also agree with R2Ks, “Crapola”.

  9. So sorry that you are having to deal with such b.s. just to get your daughter’s medicine.

    Insurance companies are a pain, but I canot even imagine having to wade through all of the information that you are delaing with.

    I sincerely hope that you are able to get this worked out and find a program that will not cost you an arm and a leg.

  10. Good Lord, that is nuts! Thank God Anna was covered by illinois medicaid before, during, and after her transplant. I don’t know how much hre medications cost total, but ofter her trasplant, the immune suppresent itself (cyclosporine) cost about 500 dollars. Then there were the 10 other medications. My mother in law had been stressing about medicare too, being diabetic. I’m not sure what she did, but I tried reading through her stuff when she first got it to see if I could make sense of it, but no, that stuff was very confusing, and unclear. Prayers for you to got everything in order for Kajsa.

  11. ccw:
    Thank you. I’ve been talking to some people today with another company. We may be able to switch without ever getting ahold of the AARP.

    Yah. The Medicare eligibility has to do specifically with kidneys. I’m not certain why. It may have to do with the fact that they are the only organs that we can replace with a machine.
    And, honestly…as degrading as the Medicaid people can be, it would be easier right about now.
    If you don’t mind my asking, are you now on private insurance for Sarah? If so, how hard was it to find with a pre-existing condition. I hear it’s pain to find. But I don’t want to go back to Medicaid when her Medicare runs out…if at all possible.

  12. Hello Rowan, Anna is still on Medicaid, but I did make it sound like she wasn’t, sorry! I was told that we would have to pay almost 600 dollars a month for Anna to be on Jason’s insurance through work, plus the other kids. Jason and I are not married, and that is why they are keeping Anna on medicaid, because they look at me as a single mother. That is also the reason why we haven’t gotten married too! Yes, I hate those people at that office, but you gotta do what you gotta do. We just can not afford to put Anna on his insurance, if they would take her! I think most big companies would, but if he worked for a smaller company they probably wouldn’t take someone with a pre existing condition. The system SUCK!

  13. So they aren’t persuing him as a deadbeat dad? We had to pull Maya off because the state would have gone after her father…even though she never gets sick and has been to a doctor once in her life.
    We’re kind of frustrated. We don’t want to live a completely impoverished life, but if we begin to make “too much” money then we’ll be kicked off. But the gap between ineligiblity and being able to afford her insurance rates is so wide. It is something that we worry about all the time.
    While I’m certainly not glad to hear that someone else has the same problem, it is somewhat comforting to know that I’m not alone in this craziness.

  14. March of 06 I went from paying a $35 co-pay for an MS drug to paying (brace yourselves kids…) $637! I scraped together the dough for this month, but I’m not sure about April. I was so angry that I pieced together a cheesey blog: God help the other sick and ederly being uber-screwed by this “D”! –jeanie

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