Tykerb assistance?
 

Mom's in the dreaded donut hole of Medicare D and trying to pursue path to make the big T affordable. Have applied to a a few programs but don't know how it will go. Any tips? Is there a network for patients to exchange unused/"failed" meds?

Re: Tykerb assistance?
 

Sorry Rich, was wondering if the offer of 3 months free trial was available in the States? That was the offer from GSK to the UK government.
Ellie

Re: Tykerb assistance?
 

Rich, I have often wondered the same thing and think how wasteful it is for expensive medication to go to the landfill. I know most doctor's offices will not take the pills you can no longer take and dispense to others--liability issues they tell me. The other thing that disturbs me these days is that the pharmacies all put an expiration date of one year on prescriptions. They do this because it is easy for them----don't want to look up or maintain a database of the "real" expiration dates. Most meds have a minimum of two years and many are much longer than that. If Medicare wants to save money on meds, you would think they would demand this practice be changed.

And as for GSK, if they don't offer the three months free trial in the states and do in the rest of the world, this should also be changed.

As I understand the health care changes (mostly negative in my opinion), the donut hole is being fixed so you may not have this problem next year. Tykerb is expensive---around $3K a month I believe.

Another thought---maybe you could contact GSK directly and discuss options. I did this with Astro Zeneca for my sister when Faslodex was first approved. It was a fight but I eventually got what I wanted---I think they might just have wanted to get rid of me but that's okay.

I wish I had some pills to send your mom but Tykerb is still working for me after 15 months.

Re: Tykerb assistance?
 

Access programs from pharma seem to vary from country to country. The deal the UK gets makes a kind of sense in that a patient might be able to start more immediately and find out if the drug is helpful before NHS is on the hook for it. I suppose it's one of those cost shifting scenarios where specific arrangements are possible here and there but eventually the $$ needs to come from somewhere...usually the US.
But you would think oral meds with no cost of IV facility, staff or premeds would be aggressively embraced. (Here's where GDPawel would mention IV drug incentives for doctors;) Interesting article on access HERE. Interesting thoughts on expiration dates, Nancy.


There is a GSK entity named "Tykerb Cares" but it is not a financial assistance program. They help patients determine their insurance coverage and, if inadequate, tell you about various assistance programs to apply for. GSK does have a commitment to access program that can be applied for but I don't know how that will work out or how long it will take. Novartis has a simple program/coupon for a free month of Femara which has allowed mom to get going on that while ironing out coverage issues. That kind of approach with Tykerb would be a reasonable middle ground.
I've heard somewhere that some hospitals/clinics pool their unused onco meds but I haven't heard of that around here.
I'm glad Tykerb is working long term for you. Helps motivate me to push through the red tape.

Re: Tykerb assistance?
 

There is a program called Tykurb Commitment to Access through GlaxoSmithKline the doctors office can contact I get mine through the program for shipped to my home I don't have insurance anymore so i get it for free thru the program maybe they can help

Re: Tykerb assistance?
 

How long did it take for the access program to decide and deliver?

Re: Tykerb assistance?
 

My sister in UK just progressed from bone mets to liver and lung mets. Currently on Herceptin, about to start Taxol. Onc say's unlikely NHS will pay for Tykerb. Would be very grateful for more information on the free three month supply in the UK.

Re: Tykerb assistance?
 

Hi
The 3 months 'free' offer was rejected by the British government.Tykerb was considered not to be cost effective by NICE, the body responsible for deciding which drugs are available on the NHS. This was in spite of a public petition and representations from leading British breast oncologists.
May I suggest a couple of things that may help. The newly elected Prime Minister has promised that he will fund all new cancer drugs once in office. With this in mind I would suggest your sister or her family contact their member of Parliament to pursue this on her behalf.
The other option which she could pursue if her onc was in agreement (and this is a key issue) is for him to contact her Primary Care Trust to ask them to consider whether given her circumstances they will agree to fund Tykerb.
Hope this helps
Ellie

Re: Tykerb assistance?
 

Ellie - thank you so, so much. This information is really helpful! We will try both avenues.
Thanks again

Re: Tykerb assistance?
 

Glad to be of some help.

Ellie

Re: Tykerb assistance?
 

Rich~
I eventurally received my Tykerb NOT through Tykerb Cares (aka Tykerb-doesn't-really-care-unless-you-can-pay-for it), however, I did have to apply to Tykerb Cares 1st, get denied, and then apply to Committment to Access. It was a frustrating and stressful, and expensive process- as I was paying out-of-pocket for the drug while waiting to get approval.
Once my application was in and I was approved, they were actually pretty efficient.
Here's a phone number I have for
Committment to Access:
1.866.265.6491
I hope someone there will be able to guide you through the process.

Keep us posted.

Re: Tykerb assistance?
 

Thanks JML. We did discover committment to Access. Mom just got shipment yesterday. She's a bit afraid because some of the literature mentions liver concerns. Her last LFT a few weeks ago was much better than previous but still slightly elevated. Maybe starting with a few pills and work up to full dose?

Re: Tykerb assistance?
 

Glad to hear you guys maneuvered through the process and are getting the Tykerb for free.
It's probably a smart idea to modify the dose to start (assuming doc's okay with it too) and increase as tolerated. Especially b/c of all the GI issues.
Best of luck with it for your Mom~

Tykerb assistance
 

On the front-page there is a Forum Categories block with links to the different forums. It contains a link to Support but that forum is actually called Assistance.

Re: Tykerb assistance?
 

Can someone better informed help me with some info Is commitment to access restricted to the US alone? My wife's Onc has said clearly that after her 9 doses of herceptin is over he is switching her on to Tykerb.My insurance is exhausted
PBK

Re: Tykerb assistance?
 

Tykerb in Illinois runs near five grand a bottle. I go through a bottle a month I've almost been on Tykerb a year. My health ins. is medicaid and it covers all cost thankfully.

Re: Tykerb assistance?
 

Thankfully my sister has JUST been approved for Tykerb under the emergency fund the UK government authorised in Oct of 2010 because it was getting such a bad rap for it's cancer treatment compared to other European countries. Sadly she is not currently well enough to start treatment, but her onc is trying to build her up.
For anyone applying in the UK I believe there are very strict guidelines about which cancers, which drugs and who is eligible for this new funding, because it is a relatively small amount of money.

Re: Tykerb assistance?
 

I have half a bottle of Tykerb i am no longer on...hate to throw it away as I know how much it costs!

Re: Tykerb assistance?
 

Rich,

I hope you mom is doing well. Is she taking Tykerb alone?

I am on the T-DM1 trial and I have to turn my medicine in at the end of every three week cycle. It makes me very sad that the medicine I do not use has to be destroyed. I talked to the research nurse, and she said, "That this was standard procedure in case the medicine had been tampered with." I don't understand why the research nurse could not count the three week supply of Tykerb for me. I am going to email Gentech and see. It is really sad that people need this medicine and it has to be destroyed and people need it.

Amelia

Re: Tykerb assistance?
 

I found this useful article in Cure Today about applying for financial assistance from various organizations not only for Tykerb, but for other cancer drugs too.
http://www.curetoday.com/index.cfm/f...rticle_id/1181