No more Medicare after 3 years transplantation

[rookiegirl]

I'm scared, concern, stressing out about losing my Medicare after 3 years.  I know I just recently received my transplant on 3/20/09, but I want to be proactive on whats to come.

Both my husband and I work a full time job (I'm currently on short term for 3 mos).  I have United Healthcare (Primary), BCBS (Secondary) and Medicare (3rd).  The unfortunate thing about my secondary insurance is that it will not pick up the primary copay.  Plus, the anti rejection medications I'm taking are considered specialty drugs which are not covered by either insurance.  These are being filed with Medicare which will only pay 80% and I'm left paying the remaining 20%.  If I loss Medicare in 3 years,  my anti rejections medications will cost me $2,500-$3,000 per month.  Where on God's green earth do I get that kind of money??

I know I will most likely not qualify for assistant because my husband's and I's combined income would be considered too much.  We currently have a kid in college and another one going to college in 3 years.

Please provide some advise, suggestions, share your stories on how to survive this dilemma.  I want to stay positive but I also want to prepare myself and my family.

Dilemma like this makes me sometimes wonder if I did the right thing by having the transplant.  Life before transplant seems more simple.  I hate to say it but when I was on PD, money was no object for our family.  Now this and the economy in recession.  WHAT TO DO???

I have Google about this Medicare issue where they are trying to pass a law in Congress.  What can I do to make my voice heard?  I know I can write to my state Congressman, Senate etc...

HELP!!
Rookiegirl

[breezysummerday]

http://ihatedialysis.com/forum/index.php?topic=2522.0

Karol has some links in this thread.  It's a year old, so
maybe someone has some updates.  Also, I read somewhere
on IHD about pre-existing conditions in regards to paying for
anti rejection meds.  This interests me also, since Ray and I
will be leaving to Virginia Mason May 31st for evaluation.
I do not know if his current insurance will pay for the meds,
so going to have to ask.

[MIbarra]

I have BCBS and they cover the meds 80%... They never said anything about "specialty" meds.

[paris]

Both my transplant centers have shown me exactly what my insurance will pay for anti-rejection meds.  They need to explain why they consider anti-rejection drugs as "specialty" drugs.  I can understand if they aren't generic and they are a higher co-pay, but don't understand why they aren't covered at all.  I am sorry you are so worried.  You don't need that right now.  I hope you find the answer you need.   

[pelagia]

We have BCBS through the state employees plan in Virginia and they cover my husband's drugs completely except for the copay (up to $70 per drug for a 90 d supply).  Ask your social worker (at transplant clinic) for help.  The social worker at my husband's transplant clinic went over all the drug costs and insurance issues with us before he went through any of the workup to get on the list.  I would keep asking questions as it doesn't make sense that the insurance companies won't cover the drugs. 

There have been a number of threads discussing the drug cost issues.  I'll see what I can find.  Try not to worry now.  You need to get healed and worrying won't help.   

[pelagia]

Here's another thread on the topic:

http://ihatedialysis.com/forum/index.php?topic=4555

[okarol]

There's more info here: How to pay for life-long immunosuppressants http://ihatedialysis.com/forum/index.php?topic=4555.0
and here Immunosuppressive Drug Coverage Legislation Introduced http://ihatedialysis.com/forum/index.php?topic=13307.0

[Rerun]

This is WHY I won't get another transplant.  I'm currently on Social Security and Disability with full benefits from a disability retirement with the Federal Government.  Yes, the same retirement and benefits that your congressmen get.  It is great! 

If I get a transplant.... I'm kicked off disability, social security and benefits in 12 months and Medicare in 3 years. 

It stinks but I'm safe on dialysis with at least money to live on. 

The first time around I was still working for the Feds so I was secure. 

But, I agree where do you get THAT kind of money!

The answer is making these DRUG Companies lower their prices.  IT is legal Extorsion.

[Wattle]

Just out of curiosity .... What do you pay per month, out of your own pocket, for your meds now? Per script per month. 

[MiSSis]

These insurance companies confuse me.  I have Medicare and United Health care.  Up until last year, UHC was primary but now I've been changed to Medicare primary and UHC secondary.  I receive a longterm disability from my previous employer plus Soc Sec disability.  I'm also checking into another transplant but at 54 years old now, after 3 years when Medicare drops me, I'm fairly certain my company would offer retirement to me (I doubt after being away from work for 10+ years that they'd want me back!  I don't have Medicare Part D but UHC picks up all of my prescription and other medical expenses after I meet the $2150.00 deductible.  With the costs of my meds, I meet the deductible in January.  My credit card is smoking by the end of January!  UHC does have me get one of my prescriptions from what they call a Specialty Pharmacy.  Sensipar costs over $250.00 per month so I'm forced to get it thru this pharmacy.  Although I was rather peeved at first (I get all my meds from a single pharmacy where I love the staff and didn't want to bother trying to keep track of just one that I would have to get else), this hasn't been turned out to be a problem for me at all.  The pharmacy calls me around the middle of every month to schedule my next delivery.  I haven't figured out why they don't make me get Renagel this way because it costs even more per month than the Sensipar but I'm not complaining.  This week I was called on Tuesday and I received the bottle of Sensipar today, delivered by UPS. 

Besides not being sure if I'll be considered a good candidate for a transplant due to other health problems, the issues of returning to work or retiring also weigh on my mind.  But before I get too concerned, I have to get through the transplant evaluation first which we have scheduled for May 29th at Northwestern Memorial in Chicago.  I guess I'll postpone the concerns about insurance coverage if or when I receive a transplant.

[Wattle]

$2150.00 deductible. 

Is this your total cost, out of pocket per year?

Our system is different here and I am just trying to work out the pros and cons of the two. I pay my own Health Insurance per month and medicare levy through my tax. The government subsidises our meds but I still have an expense out of pocket per script.

[MiSSis]

No, the $2,150.00 is just the deductible from UHC.  I also pay a small premium for UHC coverage of $16.67 per month for medical and $4.76 per month for dental coverages.  The premium for Medicare medical insurance is $96.40 per month but all amounts are deduced from my disability checks before I receive them.  All in all, I consider myself to be pretty lucky as far as my health insurance is concerned. 

Once I've met the deductible all of my prescription and medical expenses are covered 100% by a combination of Medicare and my secondary insurance, UHC.  However UHC only covers when you use providers within their system which I found out about when first thinking about another transplant.  My neph wanted me to go to the University of Wisconsin in Madison, WI but UHC wouldn't pay anything as secondary.  So I had to go back and find out what providers they would pay for.  We just wouldn't have been able to afford the 20% that Medicare doesn't pick up when a transplant is involved. 

[Sunny]

Wow! These issues of costs incurred for medicine post-tranpslant has me very worried. I don't think I can afford them. I better check with my Insurance first. I thought a transplant might be the answer, but not if it's going to break the household bank.

[rookiegirl]

I found this link from the National Kidney Foundation website in regards to Support Immunosuppressive Drug Coverage.  I took the action and signed up and received an email stating my message of support was sent to Senator Burr
Senator Hagan.  If you haven't joined, PLEASE take the time to join and support this cause.

http://capwiz.com/kidney/issues/alert/?alertid=12893386

Thanks,
RG

[rookiegirl]

I'm so relieved.  I now have piece of mind about this whole anti rejection medication costs.

I went to the hospital today to have my one month routine kidney biopsy.  Few hours after the biopsy, I told the transplant coordinator my concerns about how to pay for my medications.  Within 30 minutes, the transplant financial coordinator came to my room to talk to me and my husband.  As I was trying to explain to her about our situation, I couldn't hold back my tears.  This is how much this issue has stressed me out.  I had to take 5-10 minutes to calm down so I can talk.  I finally was able to tell her how on earth did I even qualify for a transplant when I can't afford the medications?  I have 2 Insurance (UHC and BCBS) and Medicare.  How is it that Medicare is the only one that will cover the meds?  It makes no sense to me.  She made some calls and 1 hour later she came back to my room.  She called and spoke to both my UHC and BCBS.  According to my plan my UHC will cover my Prograf and Myfortic with a $120 (both) copay for 90 days supplies.  I was in tears again because this is much better than what I was quoted ($400 Medicare 20% per month).

There was a mistake in the hospital pharmacy.  They didn't bill my private insurance because they automatically assumed I have Medicare as primary.  Medicare will not be my primary until April 2010.  The frustrating thing about all this is that the pharmacy not only incorrectly billed Medicare but they billed it to Medicare Part D which I don't have.  The financial coordinator was really upset with the hospital pharmacy.  She spoke to the director of pharmacy to investigate the issue and correct their system.  The pharmacy will need to resubmit the claims again.  Now that it's been 1 month, I need refills on all my meds.  So far,  I've only spent $45 copay on all other medications.

So, even though I lose Medicare in 36 months.  I still have my 2 insurance and will cover my anti rejection medications ($120 copay 3 months supplies).  THANK YOU GOD!!!!

[pelagia]

  thank goodness 

[paris]

The financial part is always such a worry.  I am so relieved for you that it has worked out.  Now just take care of yourself.   

[Wattle]

 
  That's a relief Rookiegirl. $120 for three months supply sounds achievable to me. You can relax now and enjoy your new lease on life.