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Nanjeanne

(6,278 posts)
51. I am so sorry you are going through this but I can certainly empathize. My husband has an incurable but
Sun May 4, 2025, 03:54 PM
May 4

"manageable" blood cancer. It basically means that he will go on a drug or therapy, get remission for a certain number of months (or years) and then relapse. He's been living with this for 11 years with many relapses. At one time, after his stem cell transplant in 2015, he was on a maintenance drug for 4 years. Because the maintenance drug was in pill form - at home - it's not covered by Medicare but by the "Medicare" Drug plan (I use quotes because this is simply called medicare drug plan - but all drug plans are run by private insurance). His copay each month (after insurance paid their part) started at $600/month and then every year after it went up - so by the time he relapsed after 4 years and went on a different treatment - his copay was $960/month! No way could we afford that. But because he was on Medicare (not private insurance) he wasn't eligible for discounted help from the pharmaceutical company. I know - crazy but because Medicare is a federal program - even though the drug plan was private - it's only offered to Medicare participants so considered federal. Our only solution - and perhaps something you can consider if you are in the same boat - was to get a grant from various patient advocacy groups. When he started this route - we would get a $10,000 grant which covered the copays for one year. By the time we finished with this drug - we were getting an $11,000 grant and that covered less than a year and we were forced to go find another grant if we could from another organization.

It's a horrible system and something no person facing serious illness should have to navigate. Usually a cancer hospital will have a social worker or pharmaceutical advocate that can help you. Reach out to your team and also search for patient copay grants for your particular illness and see which organizations might be able to help you. If you are not on Medicare - you can try reaching out to the pharmaceutical company for their discount help.

Some organizations we received copay help from were:
Lymphoma and Leukemia Society - probably only works for blood cancers
Patient Advocate Foundation
Healthwell Foundation
And check with American Cancer Society

I wish you well.

Recommendations

0 members have recommended this reply (displayed in chronological order):

it is EXTORTION Skittles May 3 #1
That was my first reaction, too! herding cats May 3 #2
Sometimes big Pharma companies say in their ads that spooky3 May 3 #3
I Did ask, as the $500 a month before the Avastin is added in is too much. herding cats May 3 #5
Sorry to hear that. I hope there is change before August. Nt spooky3 May 3 #10
Thank you. herding cats May 3 #11
Can you get on disability and get Medicaid. I don't know if they would pay for expensive drugs. kerry-is-my-prez May 4 #65
I hope things work out, too. ๐Ÿ™๐Ÿ™๐Ÿ™๐Ÿ’™๐Ÿ’™๐Ÿ’™ LiberalLoner May 4 #45
Sorry if these suggestions are futile, snot May 3 #4
Appreciate the suggestion. herding cats May 3 #7
Ugghh! snot May 3 #20
My RA treatment costs enigmania May 3 #6
WTF Skittles May 3 #8
How can you afford that?! herding cats May 3 #9
I get samples and hope for the best. enigmania May 4 #54
It's so far beyond not right. It's inhumane. Phoenix61 May 3 #12
Inhumane sounds right. herding cats May 3 #16
I am so very sorry Mountain Mule May 3 #22
We need to do something and stop with the 'speaking'. OldBaldy1701E May 4 #46
That's horrible. I am so sorry you are facing this. It isn't right, at all. 58Sunliner May 3 #13
That is obscene. I sure hope you don't lose your insurance. May The Universe protect you. LoisB May 3 #14
Oh, herding cats, this is insane. And the idea brer cat May 3 #15
I hope you know you're always a light in a dark moment? herding cats May 3 #17
(blushing) brer cat May 3 #19
I can't imagine doing a go fund me. herding cats May 3 #25
Could you appeal to a neighboring Rep for help? calimary May 3 #28
I live in Texas. herding cats May 3 #31
Maybe Jasmine Crockett could draw attention to your plight and shame your rep into helping catrose May 4 #56
Well, you just hold tight and keep good thoughts at the top of your mind. calimary May 4 #59
โค๏ธ littlemissmartypants May 3 #18
I appreciate this! herding cats May 3 #23
Can Mark Cuban system help? question everything May 3 #21
I haven't thought of him until you mentioned it. herding cats May 3 #24
Just a thought. Ask Mark. He's a much better person than most entrepreneurs. usonian May 3 #33
I appreciate what he's doing, but I believe it's only for generic drugs that aren't "controlled" (needing a LauraInLA May 4 #52
I wonder if you have what my wife had? DFW May 3 #26
Check if there are mfgr coupons, rebates, discounts, etc. Eliquis, Cequa and a bunch of others have them. TheBlackAdder May 3 #27
I am sorry to hear what you are having to go through to stay alive. sheshe2 May 3 #29
Yea DENVERPOPS May 3 #30
Pharmacy tech here... buzzycrumbhunger May 3 #32
The whole system is corrupt. Bayard May 4 #36
Agree mainly. But the prices charged are more based on profits/marketing/etc. than costs of research. erronis May 4 #55
I just took that eye drop (Xdemvy) virgdem May 4 #38
Sounds like it would be cheaper Figarosmom May 3 #34
Hi from Ukraine purrmaid May 4 #39
The chemical structure of Olaparib/Lynparza isn't that complicated. eppur_se_muova May 3 #35
Not sure that is simple IbogaProject May 4 #50
To an organic chemist, it's pretty simple. No chiral centers. No fused rings. Two amide bonds. A hydrazone. eppur_se_muova May 4 #57
Ok so price gouging IbogaProject May 4 #60
That's kind of weird, since it's a small molecule drug. However, I didn't know there was an effective treatment... NNadir May 4 #37
I've got you beat with Nucala injections. pandr32 May 4 #40
It costs 20k/month for my moonscape May 4 #41
๐Ÿ’” It's terrifying, is what it is. Heartfelt hugs, hopes, wishes for your & our collective future โค๏ธ Hekate May 4 #42
Ohh Cat, It's So Heartbreaking Cha May 4 #43
Another option not mentioned above TommyT139 May 4 #44
Thank you for raising the issue and good luck to you โค๏ธ surfered May 4 #47
The prices are all a scam - TBF May 4 #48
So sorry ๐Ÿค—๐Ÿค—๐Ÿค— ๐Ÿ˜ข Meowmee May 4 #49
I am so sorry you are going through this but I can certainly empathize. My husband has an incurable but Nanjeanne May 4 #51
I think this is why Linda ladeewolf May 4 #53
I hope Medicare is not too distant in the future for you wolfie001 May 4 #61
Wouldn't you be eligible for the ACA? DET May 4 #58
And yet, instead of asking what drove Luigi to his act of violence against the United Health Care CEO, PatrickforB May 4 #62
So beyond sick of medicine rip offs, don't citizens help with this R&D often? Brainfodder May 4 #63
Damn Solly Mack May 4 #64
Latest DiscussionsยปGeneral DiscussionยปWhoa! My Lynparza cost ri...ยปReply #51