22 replies to this topic

[DebDoodah22]

I am 64, single, working (only for the insurance and income because I am exhausted) and fast approaching Medicare....I have no idea what to do to make sure I can cover the cost of Sprycel when I turn 65. I had hoped to convince my onc to reduce my dose by way of experiment to see if I could maintain PCR at the lower cost but he would have nothing to do with it. Now, here I am in Texas on the most expensive formulation of sprycel, 80 mg. (11k)

Does anybody know what I should sign up for? What company covers prescriptions best? Anyone in Texas have any advice on these matters or can you tell me what to expect?

When I retire, if I can retire, I won't have many resources.....

I need advice now if anyone really knows what to expect and what my best course of action is, please post here.

[Floa7]

Talk to a Social Worker at your cancer center. Or your doctor can tell you how to file for it thru the pharmaceutical company. My son has CML, on social security disability. He does have medicare part D. He got assistance from the pharmaceutical company. His Sprycel does not cost him anything. He does have Humana, but each state is different on premiums. I am in Indiana. On the application it asked for gross income from his IRS return.

[Buzzm1]

DebDoodah, what is your current PCR level?  BTW, Sprycel 140mg is the same price as the 80mg; you could split it into two 70mg's.  http://bit.ly/1QQVpgJ

[winespritzer]

Hi,
Bristol Meyers Squibb funded me 100% for almost 2 yrs. I worked via BMS patient assistance. My onc gave me the info and a coupon for a free one month supply!!!
My income increased last yr and I didn't qualify for 2016.
My drug ins co-pay w express scripts is now $560.50. . . At the catastrophic level. Hopefully BMS will fund you. I intend to apply again at the end of this yr.
Good luck and happy napping!
Winespritzer

[VickiW]

I double talking to the patient advocate at your clinic.  They usually know the ropes better than anyone.  I too hit the medicare threshold in a couple months but I am fortunate that, as long as my hubby is alive anyway, retain our full drug coverage thru his work where he retired (too bad his supplimental medical is so horrible).

[DebDoodah22]

Flow7>>>
RE Social Worker at Cancer Center, There was no help there...she "just doesn't know about that".
This center only has 2 CML Sprycel patients ...the other is young.

Buzzm1>>>
PCR is on a slight rise over last 6 months from .031 to .047. ...not too worried yet. I still have MMR. Splitting is interesting but
I thought you could not split or crush Sprycel?

Wine spritzer>>> Right now, my insurance through work is amazing...but if I retire which I desperately hope to do, not sure what would happen. How on earth can you do that $560. Co-pay? That would wipe me out..

Anybody know of a reliable consultant that can detail this stuff?

[Buzzm1]

Buzzm1>>>
PCR is on a slight rise over last 6 months from .031 to .047. ...not too worried yet. I still have MMR. Splitting is interesting but
I thought you could not split or crush Sprycel?

 

in regards to cutting tablets http://bit.ly/1oHD09v

[mikefromillinois]

Flow7>>>
RE Social Worker at Cancer Center, There was no help there...she "just doesn't know about that".
This center only has 2 CML Sprycel patients ...the other is young.

Buzzm1>>>
PCR is on a slight rise over last 6 months from .031 to .047. ...not too worried yet. I still have MMR. Splitting is interesting but
I thought you could not split or crush Sprycel?

Wine spritzer>>> Right now, my insurance through work is amazing...but if I retire which I desperately hope to do, not sure what would happen. How on earth can you do that $560. Co-pay? That would wipe me out..

Anybody know of a reliable consultant that can detail this stuff?

 

Deb, my cancer center had a liaison on the unit who helped patients navigate insurance and other matters.  She wasn't a social worker; she was some kind of a financial assistant.  She gave me much info about possible funding areas for my Sprycel.  I was my doctor's only Sprycel patient.  I tried all the funding sources the liaison recommended with no success (including the Bristol Myers patient assistance foundation).  I later mentioned this to her in passing and she said she would run all this past the Bristol Myers sales rep.  She did, and two weeks later I was getting free Sprycel direct from Bristol Myers.  That lasted for a couple years.  Apparently the rep got Bristol Myers to 'take another look' at my application.

[Floa7]

Check out Bristol Myers on the internet for assistance. You should be able to find a telephone # to be able to talk to someone. And if I remember right I could not do it till he was on medicare. My son is now legally blind and I am his POA. BM for some reason turned it over to Diplomatic Specialty Pharmacy. That's brain fog, we both have CML, I am on Tasigna You do need medicare part D to file.

[chriskuo]

Drug companies do not provide direct help to people on Medicare like they do for patients with commercial insurance.

Every county has free Medicare counselors.  Get in touch with them; they should be able to point you to assistance programs that help people on Medicare.

[hannibellemo]

Contact your local SHIP office, they are all about helping people navigate medicare and choosing the best plan for our individual situation. When my husband talked to them on my behalf they suggested I make an appointment 3 months before I turn 65.

 

I am one who has continually been bemoaning that medicare is not going to be my friend, and it is not. I've been spoiled by an extremely good health insurance plan. My drug plan is my biggest worry at this time. I will be interested to find out if, as I believe now, a medicare supplement plan (Medigap) will be better for us then a Medicare Advantage plan.

 

They may not be able to assist you with co-pay resources, but you will know more where you stand financially on medicare.

 

The link is below:

 

http://www.seniorsre.../National/SHIP/

 

Good luck!

[Marnie]

Deb. . .I split my sprycel and have had no issues. Other than being a turtle. I just use a razor blade.

[DebDoodah22]

Pat... Thanks in typical Texas fashion the link to the SHIP office returns a Page Not Found response.

These 80 mg pills are triangular ...little Delta shapes.... I am going to look into how this might be done.

[kat73]

I am able to cut the dog's oval pills in the pill cutter.  Mine has a rubber chute (sort of like on a pinball machine) that holds the pill steady and sort of lines it up at the same time, with the pressure of the lid coming down.  More or less gives you an even half.

[Buzzm1]

Medicare's catastrophic drug insurance can be a catastrophe for consumers http://to.pbs.org/1Sdfs3k 

 

Penny - Idaho: I will turn 65 in July 2017. I buy my insurance from my employer. I have chronic myelogenous leukemia and take a very expensive drug. The pharmaceutical company has an assistance program that pays me the 20 percent copay that is not covered by my employer health insurance. I understand that I will not get copay assistance when I am on Medicare. This would be a huge problem. I could continue working and still get the assistance payments. But this illness is exhausting, and I would love to retire at 65.

 

Phil Moeller: Penny, I am so sorry to learn of your struggles with CML. It is an awful disease, and I wish you all the best. Your prospective payment problems highlight some of the real craziness in U.S. drug pricing and how Medicare Part D drug plans work.

 

It strikes me as puzzling, if not disingenuous, that pharmaceutical companies can defend their often high drug prices as necessary to spur continued research, and yet, at the same time, they have enough spare cash lying around to fork over big assistance payments to people like Penny. I suspect the reason this is so is because Medicare Part D plans virtually guarantee drug companies that they will enjoy wonderful paydays for their drugs when patients move from private health insurance onto Medicare.

 

Medicare does not permit private payment assistance plans to help pay for drugs for Medicare beneficiaries. It considers such payments to be a form of bribery — possibly causing patients and doctors to use medications that might not be the most effective in treating patients' medical conditions and also more expensive than other medically acceptable treatments. Unless this prohibition changes, Penny will not be able to continue using this assistance and will have to rely on the rules of Medicare Part D plans to help her afford her medication.

 

read more: http://to.pbs.org/1Sdfs3k 

[rcase13]

Idaho is one of the few states that do not have oral chemotherapy parity legislation. My state of NC does not either. Maybe someday. If it is ever enacted will that help those that are on Medicare part D?

[Buzzm1]

Idaho is one of the few states that do not have oral chemotherapy parity legislation. My state of NC does not either. Maybe someday. If it is ever enacted will that help those that are on Medicare part D?

No ... Medicare ia what it is ... Medicare supplemental plans differ .. i.e., with Kaiser Medicare Advantage, in catastrophic phase I only pay $12/Rx .vs 5% of Rx cost on most plans ... but that's only after I've paid $$$$ out of pocket to get up through the donut hole.  Fortunately I haven't as yet experienced that preliminary expense.

 

While In the 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

For 2016, the Medicare Donut Hole will be $3,310 to $4,850.
For 2017, the Medicare Donut Hole will be $3,700 to $4,950.

[chriskuo]

State laws do not affect Medicare plans, which are Federal. Medicare Part D and Medicare Advantage are run by private companies but they are funded primarily by the Federal Medicare program, which has its own rules passed by Congress.

Most members of Congress are opposed to Medicare negotiating drug prices. That's why we need to nail our representatives and vote them out unless they change their stance. Unfortunately, very few Americans vote based on expanding access to health care. In fact, many Americans want to repeal ACA which is improving Medicare Part D copays over the next 4 years.

[r06ue1]

chriskuo, most of the politicians we elect are part of the top 1% or are nefarious types that want to belong to the club.  Meanwhile, the top 1% own the media (just a few families actually) so basically what you have in America is a Plutocracy.  Americans are inundated with propaganda daily which is why the majority of Americans believe ACA is called Obamacare and that it's Socialized medicine.  

 

I just don't see anything changing anytime soon.

[Buzzm1]

chriskuo, most of the politicians we elect are part of the top 1% or are nefarious types that want to belong to the club.  Meanwhile, the top 1% own the media (just a few families actually) so basically what you have in America is a Plutocracy.  Americans are inundated with propaganda daily which is why the majority of Americans believe ACA is called Obamacare and that it's Socialized medicine.  

 

I just don't see anything changing anytime soon.

r06ue1, so right you are ...  btw, looks like you are closing in on MMR ...