Join our campaign to have ribociclib and palbociclib subsidised in Australia

Marianne_BCNA

BCNA is calling on its members and their supporters to write to their local federal Member of Parliament and state or territory Senators to urge them to support the listing of ribociclib and palbociclib on the PBS. Information regarding the campaign including letter templates and a list of federal members and senators can be accessed via this link.
Please take a look and encourage your family and friends to do so too.

SoldierCrab

just sent this out to all members of our local support group

Leapfrog

I've just put a post on Facebook and received good response within minutes.

Leapfrog

@Marianne_BCNA  Do you have an email address for Greg Hunt, please.  I just googled it so don't worry.  

http://www.greghunt.com.au/Contact/ContactGreg.aspx    

Sister

Done!  Just have to get stamps.

Karen_C

Hi everybody, hereunder is my "Lending  Voice" to getting these drugs on the PBS.  I have sent it to Greg Hunt, Federal Health Minister and local member, Andrew Giles of Scullin in Melbourne.  So much to be done to change how we get drugs to those who need them.  Our system let's us down.

 

Lending my Voice to Campaign for new
Breast Cancer drugs Kisqali and Ibrance

 

I had the privilege of being part of the BCNA representation in the
Senate Enquiry into availability of New, Innovative and Specialist Cancer Drugs
in Australia in February 2015.   As a cancer survivor I told my story. I had
run out of options, so my husband and I decided to pay for drug Kadcyla through
Roche Compassionate Program and crossed our fingers that it would not take too
long to go on the PBS as paying for this drug was not financially
sustainable.  Fortunately, the government
listed this drug in May 2015.  It took 4
years of campaigning before it was finally made available on the PBS. 

 

I am a cancer survivor, I
am not privy to the machinations of government policy but from where I sit and
what I have seen and read, I believe fundamental reform on the way cancer drugs
are currently funded is needed which could take time.  So an interim
solution must be found now so people can get access to drugs when
needed.   People with cancer don’t have
time to wait for drugs to come onto the PBS. 
From my perspective it seems that very little has changed from when I,
with many others, campaigned for something to be done and said so in front of a
Senate Committee in February 2015.  I understand
a report with recommendations has been written, but has anything been
implemented.   Why do America and
European countries get drugs 2 years before we can?    The Pharmaceutical Benefits Scheme has not
adapted sufficiently to the changes in technologies, particularly targeted
therapies. 

 

I have had cancer for 12 years and
firmly believe that “new” antibody treatments, firstly Herceptin and now
Kadcyla have been my silver bullets.  Conventional approach to cancers is that one
regime of treatment fits all is antiquated, cruel and unnecessary.  Living with cancer affects a person
physically, emotionally, and mentally.  It
can interfere with everyday activities. 
For many years I felt I was on a tightrope having many different regimes
of drugs to manage my disease with many side effects.   Kadcyla has been a revelation!  I feel that I have some control in my life as
my disease is stable and I have less side effects.  Administration of the drug is also less
invasive, with only one infusion taking less than an hour whereas other
medications took several hours.  

New targeted medical technologies
allow people to have a relative normal life. 
Targeted treatments can give quality of life, enabling cancer survivors
to remain part of mainstream society, continue to work and be a contributor to
society.  

 

My sentiments outlined to the
Senate Committee in February 2015 mirror those of people who are living with
cancer and desperately need CDK inhibitors Ribociclib
(Kisqali) and Palbociclib (Ibrance). 

 

Australian cancer patients need, expect and deserve timely access to the
latest cancer drugs under a system that is fair, equitable and in a sustainable
way. 

 

I am living proof that
treatment can be used to control the cancer, help relieve symptoms, and allow
you to live longer.   It’s
normal to feel sad when you find out that the cancer cannot be cured but
there’s a good chance you can live a long time with cancer with a drug such as
Kadcyla.    CDK inhibitors Ribociclib
(Kisqali) and Palbociclib (Ibrance) will do the same for others. 

I count my blessings
that I am still here enjoying life with my family and friends.  I want this for other people who need life-changing
treatment as I have had. 

If you value what I
have said and your office would like to discuss further, I can be contacted via .................

 Yours faithfully,

Cancer Survivor for 12 years

 Email sent to:

The Hon. Greg Hunt – Federal Health Minister

The Hon. Andrew Giles – Federal Member of Parliament -
Scullin

Marianne_BCNA

Thanks so much @Karen_C for sharing your letter.  Hopefully this will help others with their letters (hint, hint everyone).
Just also letting you know that I've removed your name to protect your privacy. 

Rosie_BCNA

What a fantastic letter @Karen_C and thanks for your generosity in sharing it on the network
All power to you and great to hear you are doing so well. Rosie 

wendy55

Have just fowarded a letter to my Federal MP, and his personal assistant was able to tell me that several others have been  sent to him as well, so we can only wait in hope!!!

wendy55

jennyss

I have also forwarded my letter  to Mark Coulton MP. The suggested formats were easy to modify.

Rosie_BCNA

@wendy55 has requested my high tech computer skills to upload the letter she wrote last year to The Federal Health Minister. Just like the letter from @Karen_C it is heartfelt and powerful. Thanks for sharing @wendy55

wendy55

@rosie thank you for putting this up, This is the letter that I have forwarded to Mr.Rowan Ramsey my Federal MP for the , seat of Grey in South Australia, nothing has changed medically(Yet) and I really don't know if I could have written another letter along those lines, it was written from heart and I did not change a thing,
thank you,
wendy55

Giovanna_BCNA

Hello @ wendy55,
Thank you for posting your amazing letter which has been written from the heart and from your personal experience.
I agree, it is such a powerful message.

Karen_C

Sent my letter  Lending my Support to Sue Dunlevy, Journalist and the atached article has popped up in papers today.  Hereunder is my response to article which had gone on Facebook:-

I am a cancer survivor for 12
years and I firmly believe that I am here because of new anti-body technology,
Herceptin and now Kadcyla. I look forward to seeing new technologies such as
these fast tracked. Cancer patients do not have time to wait. Conventional
regimes of chemotheraphy can be antiquated and cruel, and at worst,
ineffective. I am watching this space with great interest these technologies
can give quality of life, enabling cancer survivors to remain part of mainstream society, continue to work and be a
contributor to society. Current cancer regimes interrupt one's life
significantly due to down time and terrible side effects, having diabolical
consequences on people's ability to continue working and living a normal life.

I believe the Pharmaceutical
Benefits Scheme personnel are meeting this week to consider new technology
drugs. I for one hope that CDK inhibitors Ribociclib (Kisqali) and Palbociclib
(Ibrance) become available for my fellow breast cancer survivors so they too
can have the benefits and hope for a good life that has availed me.

Australian cancer patients need,
expect and deserve timely access to the latest cancer drugs under a system that
is fair, equitable and in a sustainable way.

Thank you

Karen_C

Cancer survivor 12 years

"Win for Cancer Patients - Maybe end to Chemotherapy as Immuno-therapies Fast-Tracked"
Sue Dunlevy 19.2.2018

perthnow.com.au — CHEMOTHERAPY could become a thing of the past for up to two in three cancer patients with the government looking at subsidising breakthrough new immunotherapies across multiple cancers. The medicines called programmed-death ligand 1 (PDL1) therapies — like Keytruda which dramatically extended the life of Liberal Party fundraiser Ron Walker, and Opdivo — use the body’s own immune system to fight cancer.

iserbrown

Just to say I have written to MPs and Senators and today received a letter from Senator James Paterson to say he is making representation on my behalf to Greg Hunt the Health Minister and will be in touch 

Please if you can keep lobbying 

wendy55

thank you so very much, I have yet to receive anything to even say mine has been received!!! I will be ringing shortly to at least find out if it has been read ! Get my scan results tomorrow after ct with contrast yesterday , scananxiety already at high level! trying to keep distracted, dont hold out for much sleep tonight, it would be wonderful if this drug went on the pbs and everyone with metastatic cancer could access it {me included}

Wendy55