What do you have to say about Cancer Drug Costs?

[andrewschorr]

I have been invited to participate in the US President's Cancer Panel as it discusses cancer drug costs next month. To help inform my participation, I have launched a brief survey to get your views. Please take a few minutes to share your voice. Thanks! surveygizmo.com/s3/2790624/...

[asktinu]

Can I share this or is the survey only for our group?

[ralexander]

My drug Imbruvica has been very effective in fighting my cancer. However, the drug cost $10,000 per month and now my insurance in the state of West Virginia is on the verge of collapse. I am worried about access to Imbruvica once the insurance is unable to pay.

[Cllcanada Top Poster CURE Hero in reply to ralexander]

There are compassionate access programs, the Pharmacyclics, You & I and Janssen has a separate fund... should it come to that...

You&I

imbruvica.com/patient-suppo...

~chris

[ralexander]

I surely hope there is support. I know the Lymphoma Society cannot help since my income is about $70,000, above their cutoff line. I have only the smallest hope that the draconian cuts in my state insurance will not occur. Perhaps Pharmaclyclics will help. Thanks.

[Aklambert22]

My clinic, here in the UK, has said that only way they can hope to get anyone on Imbruvica is with a clinical trial. At these sort of costs the NHS (National Health Service) cannot be expected fund the drugs.

I'm reading about all the wonderful new drugs being developed, but think 'yeah right! as if that's ever going to be available to Joe Public.'

The drug companies will see how effective a drug is, how it tugs at the heart strings, and set the cost accordingly (high).

Good luck with the conference, though I still remain sceptical.

Andy

[lankisterguy Volunteer]

Hi Melodye,

I am unclear what you are referencing about Medicare not paying for Clinical trials, I do not think it is true.

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I have been in a clinical trial while on Medicare and have taken all the new drugs approved in the last 4 years (Idelalisib/Zydelig; Ibrutinib/Imbruvica; and Venetoclax/Venclexta), and I am not wealthy or bankrupt.

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The trial sponsor supplies the unapproved trial drugs free, and Medicare Part B pays 80% of approved drugs administered in the hospital. (You mentioned getting a Medigap supplement policy- like type F or G, that will pay the other 20% of hospital charges).

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If you are confused by all the above- please read this post:

healthunlocked.com/cllsuppo...

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Medicare Part D pays a major portion of the cost of approved drugs taken at home.

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As some other replies indicated, most CLL expert doctors & staff will help find the programs to cover the Part D copay costs. The specialty pharmacies that distribute drugs and the LLS.org can also help solve this problem.

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Please see this entire post and my reply #3 of 19 replies:

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healthunlocked.com/cllsuppo...

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or this post and replies:

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healthunlocked.com/cllsuppo...

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I also sent you a private message about getting help with those copay costs.

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The reality is nothing like your comments indicate. Many of us are being treated with the new targeted drugs, none of us are paying $11,000 per month. It can be done- and we are happy to share our successes with you.

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Len

[Hidden in reply to lankisterguy]

Well I certainly hope I am wrong! That would make me feel a lot better. I read that information on Medicare.gov last night.

[MsLockYourPosts Passed Volunteer in reply to Hidden]

Melody - If you are looking at treatment for yourself, or just looking at the realities of possible future treatment, you might want to start your own post about your situation, which you can restrict to community only ("lock") to protect your privacy and that of anyone who replies. The original post here is not locked, which means it and replies might end up on google, etc.

Len has done a lot of good research on this. His links are a great place to start.

[Hidden in reply to MsLockYourPosts]

I don't know how to lock it. ?

[MsLockYourPosts Passed Volunteer in reply to Hidden]

Only the original poster can lock a thread, so you can't lock this one. That's why I suggested starting a new post. If you do that, go to the bottom before sending it and change the default from everyone to community only. You will see a little lock next to the title of locked posts. I hope this helps. Let us know if you have problems!