When Right to Life Meets Funding

I thought nothing of it when I opened a piece of mail yesterday from Astrazeneca, the pharmaceutical company that developed the new medication I just began taking to control my ovarian cancer.  As per usual, I skipped the introduction and went right to the middle of the page where the “heart” of an issue is usually introduced.  Everyone has to begin letters with background and niceties, so I just skip it.  My heart fell to the floor.  The words, “not approved for full funding” caught me rather unexpectedly.  Not understanding the context, I skipped back to the beginning of the letter to figure out what the heck was happening.

Having had fantastic results on Lynparza – to the degree whereby my tumor in my lymph node appears to have shrunk significantly – I had a vested interest in whether or not I was going to be able to continue taking the drug.  At a cost of $10,000 per month – I knew that this was not going to be funded readily out of the family budget.  In fact, scenes of Americans going bankrupt to save a life flashed before my eyes.  Till now, Lynparza support program was funding me fully.  It was anticipated that, since the drug was working so well on so many women who are BRCA positive, the province would pick up the cost as it has with so many other vital cancer fighting drugs.

Not the case.

Denied.

What?

How is that possible that this drug was not recognized as a life-saving drug?  True – it is not a cure – but it keeps me on the bench!  And I have two of the most important things that keep me fighting on my side:  quality of life and hope.  I have lots of hope.  I have so much hope.

Reading on, I discovered that my funding had been grand-fathered per se.  Thank God.  Thank God. Thank God. I don’t think I could take any more kicks to the ribs.  Nor could my family.  I have no idea how we would afford this life-saving medication and not have a totally disrupted life.  What would we do?  Would I allow the sale of our home – a move – would I have to return to work while fighting for my life?  I know many people have to make these choices.  I am privileged.  This I know.  I am thankful every single day I am alive.  I tell my story as a good news story.  I believe it is.  Every day is “icing” to me.  The system, so far, is working… for me.  Health care in Ontario, Canada, has always been something on which I could count.  Broken elbow?  Fixed.  Infection?  Fixed.  Diseased?  We are working on it.

I feel sick when I think of other women who, after November 7, will not be fully funded.  I feel anxious, but mostly sick.  This is a human rights issue.  This is an issue that we, Canadians, only read about.  This does not happen in Ontario, Canada.  I have never had to choose my mortgage over my health, or my health over my mortgage.  This – is Canada.  We – are advanced.  I – believe in universal health care… equality… fairness… a right to life.

So – I need to give back.  My pills cost nearly $200 a day.  How can I “earn” my keep to make each day count?  How can I make it so that other woman with this same disease feel hope?  How can they have quality of life?  Even if it is only for a year or two?  These years count!  Our lives count!  I need to give back so that others can enjoy life as much as I do and that means living with reassurance that fighting for our lives doesn’t mean putting our families into bankruptcy.

And so – it begins.  I believe this is a new chapter.  I have a mission.  I have no idea where to begin.

“You have never let any obstacle get in your way, Stacey”, explained a friend of mine last weekend.  I hadn’t seen her for nearly 30 years.  We had been university friends and had lost contact.  “You were a free spirit”, she added.

Now, I believe her.  I need to believe these words.  Of all the obstacles I have faced, I think this one is up there in terms of BIG.  I need to not give up on this battle for cancer.  That includes fighting for the rights of other women to have access to Lynparza.  I am an advocate.  I am a cheer-leader.  And now – my focus is on this mission to make it accessible.  Who can afford $10,000 per month and still survive financially?  Not me.

I am on a mission like no other.  I have been offended by the injustice.

I have experienced a visceral reaction to a complacent and uninformed decision by an organization that has been blinded by ignorance and bureaucracy which must be conscious about the ramifications of its decisions.

I, rather we, have a right to life-sustaining medication.  And in this case, it is Lynparza.  I will fight to give others access to it – I have a mission.

Watch me roar.

 

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About inmycorner

This blog began as an opportunity to tell my Dad's stories. I sat with him and the computer and together we told stories. It was a wonderful way to get to know Dad. He was 9. He and Mom had a wonderful life together and since she passed away a year and a half before him - Dad was ready to join her. I no longer tell his stories but have found stories of my own. The impetus to resume this blog was the discovery that I had stage 4 ovarian cancer. Since blogging had been so therapeutic for my dad and I to get through our grief, I felt maybe this would be a good outlet to process my situation. I also hoped it may serve as an outreach to anyone else who is facing this very ominous journey. So far, so good.
This entry was posted in Lynparza, ovarian cancer, Uncategorized and tagged , , . Bookmark the permalink.

30 Responses to When Right to Life Meets Funding

  1. Judy says:

    What you wrote upset me, too! You are going to be an amazing force – putting yourself into this fight will help so many people. I’m impressed with you, Stacey. You are fighting from your heart and so giving. Proud to know you.

  2. Janine says:

    You and I both know that when you put your mind to it you will be successful. Watch out any thay come in your way. LOVE YOU XO

  3. karen markovic says:

    The only thing Trump ever said that was the truth is “Canada’s system is failing” well something along those lines….this subject is so upsetting…on so many levels. Good luck Stacey…..roar as loud as you can. Hopefully those with wax in their ears and shit for brains will listen.

  4. sharechair says:

    I think that it is shameful that we have life saving medicine available but only if you are rich enough to buy it. Are we really so low that we value a wealthy person’s life more than others? Because that is what we’ve done…….. I’ve read so many stories of people not being able to get the treatment they need (even though it exists!) just because of the price tag. Shame on us!!! I’m so proud to know you …… go get ’em!!!

    • inmycorner says:

      No kidding, eh? It really does come down to that – money. It is very sad – and indeed shame on us. I am going to do my best to right this wrong. THanks. I guess I was given extra time to fight the good cause! You are sweet – thanks for cheer-leading me on!

  5. Darla says:

    Hi Stacey, I am so happy for you in that the drug has been grandfathered to you! The cancer I had 30 plus years ago was minor compared to what you hav faced. They caught it in the early stages and laser treatment was all I needed. The worry is always with you. I pledge to give back my way was with Weekend in to End Breast Cancer, OneWalk, Terry Fox and any other cancer fundraiser. I feel I owe who raised funds in the past to make me well now. As you know we have cancer in our family. This is why I walk for Carla, myself, my Dad, Toni, you, my friends, coworkers and acquaintances. If I can do anything to help let me know. I might not talk to you much, but you are always in my thing ughts and prayers. Lov Darla

    • inmycorner says:

      Thanks – me too!!! And, no cancer is minor – all cancers are scary and have potential to be beasts.. bravo for your efforts. I guess I need to step up my game now. And thank you for keeping me in your thoughts and prayers. It is comforting to know. Much love, stacey

  6. Good one – and I’m sharing your roar on facebook

  7. Gwen says:

    Thankfully you are grandfathered, but if this drug can help others we really need to start lobbying the government. A young girl from my school was in a trial group for a new med to help manage her CF. The drug benefits were life changing for her, but again not covered by the provincial government. A year + of lobbying and putting a public face on the cause and the drug is now covered. The cost of the drugs would have meant her family would have had to stage mega fundraisers every year to cover the meds. Now she can be a much heathier young adult and is better able to manage her CF. She is a prime example of how one person can initiate change if the have the courage to speak up.

  8. Laurie McCarthy says:

    Look at the village you have around you!
    Think collectively!!!
    I smell brainstorming:-)

  9. You roar greatly Stacey. It is inhumane to have medication that could potentially help human beings, and withhold it or make it so astronomically expensive people literally die because they can’t have it. What is wrong with our world…..

  10. pepe says:

    Stacey, i feel this totally.What’s the point when we make a medicine for a certain disease, and it cannot help common people. Even in research world also, sometimes certain research paper are not available for free, we need to pay certain amount to read it to publishing company. Imagine, knowledge are meant to share but unfortunately,but in this world of today, everything is being commercialized. I am with you in this and hope you will fight for it till the end..!!

    • inmycorner says:

      Oh dear – I hadn’t realized the extent to this “privilege”. So true – what’s the point if the medication is not going to be available? Why research if not to share? I guess the battle is bigger than I had thought! Thanks for the communication, pepe! Good to hear from you, my friend.

  11. Gallivanta says:

    I am listening for your ROAR, Stacey. Similar situations arise here because of our drug funding system. I think you may be very interested in this programme which was broadcast on our national radio recently. http://www.radionz.co.nz/national/programmes/ninetonoon/audio/201821176/canadians-warned-not-to-rush-towards-pharmac

  12. Lynn Bugden says:

    I know lobbying works. My brother-in-law has Amyloidosis….a rare, chronic and ultimately terminal disease that has been treated using a chemo drug that has improved his symptoms, his quality of life and slowed the progression of the disease. However, the drug was funded only for multiple myeloma patients and not for Amyloidosis. A group of oncologists at Mt. Sinai and Princess Margaret lobbied the government for two years…and were successful in having funding restored for Amyloidosis patients. Keep on with your mission to fight this kind of injustice….you will find a way to make a difference in this battle, too!

  13. laura brown says:

    Never, ever kick a Stacey when she’s down – once again the rich score a point – but what? 10 K a month – wow – what if you were on say ODSP – would that drug plan cover it?

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