English Community

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Sorry I haven’t been following this closely enough - what possible reason is there for this to happen? And if it has anything to do with profit I will lose it! Thanks!
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@hgtv it is the lack of clarity on the reason for the decision that is so exceptionally frustrating. Who is being the irresponsible party?? 

I do believe that AbbVie has the right to a reasonable profit considering the years of time, effort and cost they have expended in the development of Elahere. I also believe pCPA has a duty to negotiate for the best possible cost baseline. To 'end' negotiations however, because one or both sides are not getting what they want is exceptionally irresponsible. Drugs cost money. Figure it out. Do not take a stand at the risk of human lives. That. Is. Unacceptable.

We deserve full information on the rationale for the breakdown. I've been on the pCPA site. I can tell you that from my vantage point they are currently in conflict with elements of their published Vision, Mandate and Guiding Principles. Perhaps they need a reminder?? The names of their leadership team are published. I'm not shy about communication campaigns however, I've asked for guidance from OCC on how they best feel our voices can be heard. I believe there is strength in numbers and I trust their guidance.

I guess we take deep breaths for now and determine the best next steps. Thank you for lending to voice!

#OCCinfoandupdates

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Please keep me posted! I’m not shy about sending along my thoughts on the matter also. Women’s lives for the sake of profits is not a good look.
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Thank you @StephOCC for informing this community. I know that OCC is our largest advocacy group and has and continues to do everything it can to support ovarian cancer patients in so many aspects. I will admit that this decision by the pan-Canadian Pharmaceutical Alliance (pCPA) and AbbVie is unacceptable and frankly, inhumane. Especially as this drug has received approval from Health Canada and there are women right now involved in Elahere treatment and also in consideration for treatment.

We have not been made privy to the reasons that the negotiations break broke down and so we end up "making stuff up" as to the rationale. Is AbbVie setting a price too high? Is pCPA being unreasonable on how much it's willing to establish as a cost baseline. That by the way ultimately makes me sick since it's basically telling me that pCPA have a 'threshold' on its value of a human life. Disgusting. Get back to the table and show some respect on both sides. Making this treatment unavailable through public drug programs, is frankly an unacceptable outcome. 

I know this is all new and OCC is continuing to monitor. I would appreciate however some perspective from OCC on what we as ovarian cancer patients can do to ensure our voices are heard. Is there someone we should be writing to? Our premiers who initially established pCPA? To pCPA's leadership team? To our Prime Minister? I want to know how we can make enough noise to get these two groups back to the table because frankly, lives depend on it. 

As well, I'm sure many Teal Sisters will have questions. I would encourage people to share their questions and concerns on this thread so that OCC can gather as much information as they can while also keeping us informed as this progresses. This is very tough however we have proven that we are tougher!!!💙

#OCCinfoandupdates

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Thank you for starting the discussion on this vitally important topic, Alwayslearning. It is very distressing to think that this medication has been halted for reasons we don't yet know, and for me, any reason will be unacceptable because women's lives are at stake. 
I agree that making our voices known in every way possible will be impactful. It is finding the right pathways and there will need to be several. 

Not enough people know about this disease and its implications for thousands of women diagnosed every year. Overall, we are surviving longer than women did in the past and this is due to better treatments. Elahere has brought hope to those who are platinum resistant as well as to us all, as we are in this together. 

I await to know more about the negotiation breakdown so that we know how to approach this in the most effective way. I will also be interested in discussions at the Ovarian Cancer Conference at the end of May, as this should be a very relevant topic. 

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This is very disheartening..  I believe everyone should have equal treatment no matter their geography.  Government spend billions on pipelines, fifa security yet we can't fund a medication that may give cancer fighters more hope, more time.  I agree we need to understand why they have declined this drugs even though it's shown efficacy.  If it comes down to money that is not a good enough reason.  This is women's lives, mothers, sisters,grandmothers,cousins, etc ….i hope we can do something to fight this decision.  A 25% 5year survival rate is not good enough.👊💪

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@Meinvan agreed. In Canada, geographical location should not be a precursor to what is/isn't available from a healthcare perspective. I'm going to start a list of questions on this thread. Please feel free to add to it as I certainly will not come up every thought on the minds of our OVd Teal Sisters.

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@Alwayslearning and that it even varies province to province is crazy.

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@Meinvan you got that right. It seems to be the same for many things related to OVC 😡

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I too have been hoping to try Elahere since my treatments have been stopped because they are no longer working. My CA 125 continues to climb rapidly.
I am now waiting to see if I am accepted on a clinical trial.
We all want more time.
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@pat I hope you will have success with the clinical trial. I agree...time is the factor we all seem to want more of when it is challenged.

#Clinicaltrialsandresearch

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@LeslieA this is certainly an item to add to your list of questions now. I do hope, as you say, that OCC pivots to add this to their agenda if it was not already a focus of discussion. It's so important to keep the conversation going on this.

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@StephOCC ... thought I'd start a list of questions related to the Elahere decision and invite other Teal Sisters to build upon this:

1. Why exactly did the negotiations break down?
2. Does "conclude without agreement" mean that discussion are forever ended OR can they be reopened if one or both parties present a new offer in the negotiations?
3. I read that although the pan-Canadian Pharmaceutical Alliance (pCPA) closed pricing negotiations without an agreement with Abbvie that provincial and territorial public drug plans can negotiate individual access. While I realize this is all very new news, have you heard of any provinces who are progressing forward at this time? 
4. What happens to women currently in treatment with Elahere?
5. What exactly can we do to use our collective voices to raise attention and get both parties back to the table? Do we target pCPA? Their leadership team? AbbVie? Our premiers? Prime Minister? Health Canada (who has approved Elahere for use in Canada)?
6. During the timeframe that Elahere is not being funded "publicly" is it available privately and at what cost? I read online that the cost was $30K for a 28 day treatment however I'm not sure if there is any cost reimbursement support from AbbVie.

That's a start...

#OCCinfoandupdates #Treatmentandsideeffects

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@Alwayslearning I too wondered about those currently receiving elehare, will they continue or will it be taken away all together.   I read also about the $30000 for one cycle, so if they did a year works out to be $360000/year per patient.  I get the price tag sadly, big pharmas are in the business to make money.  I did read somewhere that patients pay $300 per treatment.  A small price to pay if the treatment works for you imo, but I know maybe not always feasible.  I hope they come up with an agreement, or doctors can get special approval for use of drug and not be denied.

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@Meinvan yes I googled and saw the price tag. Not sure if that's the 'true' price or a starting point price for the negotiations. Who knows for sure. I'm hoping our friends in OCC will be able to get greater clarity and then help with a plan of action to "make some noise" on this one.

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@Alwayslearning@Meinvan@PatD, @LeslieA, @hgtv

Thank you to all of you for sharing your thoughts, questions, and experiences so openly. We know this news has brought a great deal of disappointment, frustration, and uncertainty to our community.

Right now, we are still in the information-gathering stage and are actively meeting with stakeholders involved in the process to better understand what happened, what options exist and what next steps could look like. At this point, we unfortunately do not yet have many definitive answers.

We also want to be mindful that there is still a great deal we do not know, and would encourage everyone to avoid speculation around blame or the details of the negotiations until more information becomes available.

Please know that Ovarian Cancer Canada remains actively engaged, we are listening closely to this community we and will continue to share updates as we are able. We also recognize the strong desire from many in the community to take action, and we appreciate your willingness to lend your voices if and when the time is right!

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Thank you @StephOCC … we know we are not alone in this and I truly value the support and leadership of OCC. The Teal Army will be ready when path forward is clarified. 💙

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@StephOCC thank you.  I know we have the support of the OCC and that you will continue to fight for better treatments for everyone.  And thank you for keeping us up to date.  I agree with @Alwayslearning that Teal Army will be ready when needed.  We are a strong group of amazing women🩵👊💪

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