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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UPDATE 

Many members of our community have been asking what comes next following the recent news that negotiations for ELAHERE ended without an agreement.

First, we want you to know that we hear you and are actively preparing our next action to urge decision-makers to restart negotiations. Ensuring that the voices of people affected by ovarian cancer remains at the centre of conversations about access to ELAHERE is a priority and we intend on making our next steps available for you to get involved. Our next move is critical so thank you for your patience!

 We know how important access to ELAHERE is for many people living with ovarian cancer and we know how disappointing and frustrating this outcome has been for patients, caregivers, families, clinicians and advocates across the country. As we prepare our next action, we continue to meet with stakeholders and decision-makers. Rest assured, Ovarian Cancer Canada remains actively engaged on this issue.

We look forward to sharing more details in the coming weeks. Thank you for your continued passion, advocacy, and commitment to improving outcomes for everyone affected by ovarian cancer.

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

Thank you @StephOCC for the update. I have great confidence that when you make the "ask", this group is going to be there to mobilize. I appreciate the continued effort by OCC on behalf of all Teal Sisters.

#OCCinfoandupdates

I have had platinum drugs fail me from the start - my tumors grew and spread.  I was given a surgery date then woke up to learn they took nothing out.  Stage 3C spread all over. Then they gave me Taxol and my doc petitioned for permission to add Avastin and everyone but me expected it would give me less than a year. I was determined to last longer than that.  It's been 4.5 years!  Now, I can't take Avastin for the next several months as I had two complete bowel obstructions and Avastin can perforate a weakened intestine. Doc is being cautious.  I was tested at 80% for folate receptor alpha.  I've fought off ovarian cancer against all odds on  just Taxol and Avastin.  Knowing that Elahere, targeted to platinum resistant and platinum refractory patients, was on the back burner, gave me hope that if my cancer started to grow and spread, I still had a chance.  Now it's been yanked away! It is devastating news for someone in my position.  I am SO tired of fighting for my life all the time.  But I'll never give up; I have so much to live for. Please let the decision makers know my story and that not making it available is unacceptable and inhumane.  They MUST make a deal, and the drug company must STOP being so greedy.  We are human beings with husbands, children, and grandchildren and our lives matter.     Thank you.

Wow when I read this I am incensed that Elahere is being denied to you. I have no idea if this is possible but could you start a Gofundme to pay for a trip and a stay in a US hospital to receive Elehare? When I was in active cancer I saw (mostly remotely) Dr Keith block who is an Integrative oncologist. I used him for the natural stuff like supplements and high dose Vitmans and ivermectin (so cheaper than chemo) but I’m pretty sure you could somewhere state side. What a circus with people’s lives at stake.
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I also cannot have Elahere because it’s been denied.
I was tested and was approved for it.
How sad that these people play with our lives.

I have started a Clinical Trial as a last resort. Hoping it will give me more time.
That is all we ask for- more time with our loved ones!
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@pat I'm so sorry to hear of your denial. I keep tearing up every time I hear stories such as yours. I keep trying to find the right words and they fail me. There is an absolute impact on lives via these decisions. It makes me wonder how those who were involved in these negotiations are able to sleep at night. As @StephOCC and her colleagues at OCC know, the Teal army is going to be unleashed on this and I hope our voices are so strong that it makes them quake in their shoes.

I hope the clinical trial goes well. Sending you a big hug. 🤗

Thanks for your support
You are right
How do these people sleep at night?
Would be different if it was one of their loved ones!
We were really counting on this drug.

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Thanks @Alwayslearning, I too have come here several times to write something but can't seem to find the right words for our sisters being denied a life line when all else have run their course.  It makes me so angry when I think we have use gofundmes, and travel out of province, out of country, to receive treatments that may help prolong our time here and our quality of time here.  As a nurse for over 31years it makes me so frustrated that after all the time, compassion, and dedication I have given to complete strangers my entire life that when I need help I'm told "sorry we can't help you". These people are holding our lives in their hands and decide whether or not we are worthy enough.  I agree if they knew someone personally in their lives enduring this disease maybe they would be more willing to back it.  I am worthy, I am important, I am someone, and so is each and everyone of my Teal sisters here.  Remember "without ovaries there's no you".🫂💪👊🩵

@Meinvan I appreciate and hear you! I know when the communication mobilization begins that you will be a strong member of our collective! Also I've never heard the term, "without ovaries there's no you" before. 💯 That truly adds solid perspective doesn't it!

@BellaDonna1959 thank you for continuing to remind us about the 'human' stories impacted by these decisions. When OCC reaches out to get us mobilized I know we will hear your voice. At this juncture, I'm not sure if it's the drug company or the pan-Canadian Pharmaceutical Alliance that is the issue however I know that's what OCC will uncover. Then we will know exactly what, where and to whom we will be taking our fight.

I absolutely agree...our lives matter and cost should not be a barrier for life. Thank you for your continued strength!! 💙

#Healthandwellness #OCCinfoandupdates