19 replies to this topic

[tinman1939]

I have had CML since 2006, more than eight years ago. I am planning an early retirement (at 63; I am now 61), due in large part to my desire to enjoy life free from the shackles of having to go to work every day, as I have since I was a paper boy in my teens.

I consider myself fortunate to look forward to a pension, as well as Social Security, in addition to money set aside in a 401(k).

 

That being said, planning for retirement is a near impossibility due to the escalating cost of TKIs. From what I can tell, the Medicare system does not cover our treatment; rather, we can expect to pay a lot each year for our TKIs (mine is Iclusig), perhaps as much as $10,000 or more for that drug, alone.

 

If I find that I have to raid my 401(k) each year just to pay for drug and related costs associated with my CML, I am going to draw a line in the sand. I am going to refuse to allow this chronic illness to so deplete my savings that I leave nothing to my two beautiful adult daughters. I refuse to let that happen. If it means not having the ability to pay for my TKI each month, so be it.  Sure, I will seek alternative sources of funding, if they are available to me. But with a pension, Social Security and a 401(k), I doubt I will qualify until I am left penniless. Again, I refuse to let that happen.

 

The line in the sand has been drawn.

 

Anyone else facing a similar future in or near retirement?

 

Thanks for listening.

 

Wayne

 

 

[Antilogical]

Ooooh, naughty, Mr. Tee.

 

I am a few years away from full retirement age.  Due to issues with spinal stenosis (funny how the CML is no longer the first thing on my mind), I would like to retire, but I, too, am worried about the cost of the meds.  I'll revisit the issue when Gleevec is generic.

[chriskuo]

Every state has free Medicare counselors.  I'm pretty sure they can get your prescription costs below $10,000/year.

 

I'm sure your daughters would much prefer to have you around for many years than a larger inheritance.

[hannibellemo]

Ditto what Chiskuo said, Tinman...my parents died in the mid and late 80s and they left me a large inheritance, I would much rather have had them around for these past 30 years! I'm in the exact same boat as a you. Steve worked hard and retired at 66 - this past May. I just met with IPERS and I am going to retire next year at 65. We have a retirement plan in place, the only outlier is my CML and the cost of my TKIs.

 

One of the things that is hurting us is that the Federal government is not allowed to negotiate with big Pharma for the cost of drugs in medicare. The donut hole will go away soon, I'm not as concerned about that. I'm going to lobby. As individuals and as a group, perhaps with the help of LLS, we need to lobby our legislators for the what we want and need to keep our lives and retirement intact. There are other issues in health care that affect everyone of us, not just those of us looking at retirement.

 

I'd like to know what others think, too!

[kat73]

Brava to you, hannibellemo, I like your lobbying idea.  Nothing like taking action to feel in control and like you're engaged in something meaningful.  This one may be quixotic, but trying is always better than muttering.  (Muttering is what I generally do.)  You may be onto something, as more and more of the new treatment drugs are so astronomically expensive and there are going to be so many more of them in the future as we move into the era of individualized, genetically-driven medicine, and . . . there will be more and more survivors taking the stuff for decades.  I think that Medicare rule will HAVE to change.  Look at how other countries handle that - their governments negotiate the prices with the drug companies.  The sky hasn't fallen. 

[Floa7]

I start drawing Medicare in October. I max out my health insurance in August, So I am going without Tasigna for the month of September. I have talked to the pharmacy, Accreddo, And they have no assistance, only with a co-pay. $5, I can afford that but not the 10 k. Then medicare with there donut hole will be $4700 for oct and Nov, then $500/ month. Then in Jan the 4700 starts over again. I have also talked to the social worker at the cancer center, no help.

[Buzzm1]

A supplemental plan for Medicare, which also covers Medicare Part D, is highly recommended. 

 

As of June 1, 2015 I have the Kaiser Senior Advantage at a cost of $69/mo. which is deducted from my Social Security check.

This is a replacement for the Lockheed-Martin retiree Kaiser Senior Advantage Plan that I had for 10 years before Lockheed-Martin  canceled all Retiree medical plans, effective June 1, 2015.  There is no comparison between the two plans.

 

It is my understanding that I will now pay 25% of the cost of drugs until I have reached an out-of-pocket cost of $2,960 at which time the donut hole is entered, and then I'll pay 45% of the drug cost until a total out-of-pocket cost of $4700 is reached, at which time I'll have reached the Catastrophic Phase and then pay $12 per Gleevec prescription.  

 

Fortunately, having had the LM KSA plan for the first five months of the year, I am almost out of the donut hole for 2015 (currently being reviewed by Kaiser Medicare Part D consultant), so I only need to worry about 2016, and what that will bring.  Note: out-of-pocket doesn't necessarily mean my pocket, or your pocket, as some of what the plans pay is considered out-of-pocket.

 

While In the Medicare Donut Hole, Consumers pay:

2016: 45% for brand-names and 58% for generics
2017: 40% for brand-names and 51% for generics
2018: 35% for brand-names and 44% for generics
2019: 30% for brand-names and 37% for generics
2020: 25% for brand-names and 25% for generics

[jmoorhou]

Can you get supplemental insurance (usually about $100.00).  I have Kaiser and don't pay anything.  Usually the Leukemia society can give $7500 a year.  Also Gleevec is going generic next year.

[Dom]

I just retired -- forced to -- five months ago. I'm on cobra now, and I pay $550 a month with no co pay for gleevec or any tki. So about $6000 a year. It's doable. I will need aca for about 8 months, I have no idea was that entails, and the healthcare.gov site is of no use. Then comes Medicare, and my research is the same as buzzm -- about $8000 a year all told. That's going to be tight. My hope is that generic gleevec will bring the price down (my onc thinks it won't). And that the cessation trials will get us all off the tkis anyway. Live in Hope ... That's me.

[Floa7]

Can you get supplemental insurance (usually about $100.00).  I have Kaiser and don't pay anything.  Usually the Leukemia society can give $7500 a year.  Also Gleevec is going generic next year.

I filed with the Leukemia Society in Indiana and got approved. The $7500 dropped to $500 and now they are out of donations for this year.

 

I inquired with AARP and Medicare Part D, prescriptions. as BUZZ says it will cost you $4700, between the first two months for me. But the pharmaceutical company might help.

[SUE]

I filed with the Leukemia Society in Indiana and got approved. The $7500 dropped to $500 and now they are out of donations for this year.

 

I inquired with AARP and Medicare Part D, prescriptions. as BUZZ says it will cost you $4700, between the first two months for me. But the pharmaceutical company might help.

 

Floa7,

 

I thought that the pharmaceutical companies did not provide any financial help for people who are on Medicare.    Did they say they would help?  

 

Sue

[Buzzm1]

I filled a Gleevec 300mg 30day Rx, each month, using my Lockheed Martin retiree Kaiser Senior Advantage Plan.  My co-pay was $20.

If anyone can figure out how the out-of-pocket cost is calculated, you obviously know a lot more than I do.

 

According to the Kaiser Medicare Part D monthly statements:

Jan. Your year-to-date amount for "out-of-pocket costs" is $1,991.58. $1,991.58

Feb. Your year-to-date amount for "out-of-pocket costs" is $3,449.11. $1,457.53

Mar. Your year-to-date amount for "out-of-pocket costs" is $4,132.21. .. $683.10

Apr. Your year-to-date amount for "out-of-pocket costs" is $4,451.05. .. $318.84

May Your year-to-date amount for "out-of-pocket costs" is $4,614.12. .. $163.07

 

The donut hole ends once $4,700 is reached, but at the rate the "out-of-pocket cost" is decreasing I may be stuck in the hole forever

 

I submitted the above to the Kaiser Medicare Part D Billing consultant for a review and an explanation.

 

Maybe I should have left well enough alone ... hoping they don't come back with "bad" news.

 

Buzz

[chriskuo]

If the catastrophic copay of $12 is true, then Kaiser is much more favorable than most Medicare drug plans.

 

Medicare allows drug plans to charge 5% copays in catastrophic for branded drugs and that is what most of them do.  For TKIs that usually works out to $250 -$400.

[chrissy778]

 My husband and I have talked about this before. A friend of ours passed away and all the money he saved and put in the bank his entire life was depleted with in a year. His antique car, boat, camper everything sold and money gone. His two daughters and their boyfriends spending his life savings in less then a year. You said you worked your entire life even starting out on a paper rout as a kid, enjoy your retirement and relax. Like people stated above there are a lot of places that can help lessen the cost. I would try the Leukemia society like Floa 7 above...

[chrissy778]

And to think people in prison get their medications for free. They also will get a organ transplant before anyone else on the list because they are a ward of the state. We also pay for their trans gender sex changes if they want one...

[Dom]

Buzz, you say your copay is only $20. So what are the monthly numbers you're listing? Is that your monthly premium?

[Buzzm1]

Buzz, you say your copay is only $20. So what are the monthly numbers you're listing? Is that your monthly premium?

Dom,

 

No, what I posted was the portion of the full Kaiser Gleevec drug charge credited to me as an "out of pocket" cost, while I was covered under the Lockheed-Martin Kaiser Senior Advantage plan.  There is some correlation between the numbers I posted and the amount paid by Medicare, plus my Rx co-pay, but not a complete correlation. What doesn't make sense now is how the amount paid by Medicare was calculated.  I'll hopefully know more after I hear from the Kaiser Medicare Part D billing consultant.  Hoping I am not sorry that I asked them to look into it, lol.

 

Buzz

[Buzzm1]

After a co-pay of $52.68 today for a Gleevec 30-day 300mg prescription, now under the Kaiser Senior Advantage Plan, I exited the $4,700 Medicare Donut Hole

 

According to the Medicare Part D monthly statements: (under the Lockheed-Martin Kaiser Plan)

Jan. Your year-to-date amount for "out-of-pocket costs" is $1,991.58. $1,991.58

Feb. Your year-to-date amount for "out-of-pocket costs" is $3,449.11. $1,457.53

Mar. Your year-to-date amount for "out-of-pocket costs" is $4,132.21. .. $683.10

Apr. Your year-to-date amount for "out-of-pocket costs" is $4,451.05. .. $318.84

May Your year-to-date amount for "out-of-pocket costs" is $4,614.12. .. $163.07

 

For the remainder of 2015, now under Catastrophic Coverage, there will be a $12/mo. co-pay.

 

For 2016, the Medicare Donut Hole will be $3,310 to $4,850.

[wvu83]

Seriously, about Canada. Has anyone tried ordering TKIs from a Canadian source or tried traveling up north and bringing it back? Hello FBI !!

[chriskuo]

Given the net cost after insurance or subsidy in the US, I find it hard to believe many Americans would find it useful to source TKIs in Canada.  They are cheaper in Canada but not cheap enough to match the net cost in the US.