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30 May 2017 at 12:00AM

Help needed to get Lanreotide (Somatuline) on the PBS

 


For the third time, the Pharmaceutical Benefits Advisory Committee (PBAC) will meet in July 2017 to consider the listing of LANREOTIDE (SOMATULINE) on the Pharmaceutical Benefits Schedule for treatment of NON FUNCTIONING PANCREATIC AND GASTROINTESTINAL NETS (GEP-NETs) in adult patients with unresectable or locally advanced or metastatic disease.

PLEASE SUBMIT YOUR COMMENTS (AGAIN) AND HAVE YOUR SAY NOW (submissions close June 7th 2017) 

Disappointingly, Australia is one of the only countries in the world that is not supporting/subsidising the use of lanreotide (somatuline) as a mainstay therapy for the management of functioning and non-functioning pancreatic and gastrointestinal NETs. This is contrary to the evidence (CLARINET study) that clearly shows that it slows tumour growth and conveys a survival benefit for NET patients compared to placebo or 'watch and wait' measures.

In November of last year we had over 140 health consumer submissions but the PBAC, for reasons unknown, decided to compromise the care of Australian NET patients and denied subsidising it. Unfortunately our patients do not have the resources, support or treatments that more common cancer patients do and this results in death rates that are more than 2-4 times that breast, skin or prostate cancer. 

Therefore, we strongly encourage you not to be complacent, nervous or unsure, but be empowered to have your voice heard and complete the task below. We must succeed this time so that Australian NET patients will suffer no longer - financially (paying thousands of dollars for monthly injections), physically and emotionally.

10 MINUTES OF YOUR TIME HAS THE POTENTIAL TO PROLONG THE LIFE OF AUSTRALIAN NET CANCER PATIENTS BY YEARS!
WHAT CAN YOU DO?
1. Go to the PBS website (see link below)
2. Enter LANREOTIDE into the section of medicine to which the submission relates
3. Enter JULY 2017 into the section of date of the PBAC meeting
4. Enter YOUR DETAILS
5. Then TELL YOUR REASONS why all NET patients would benefit from access to LANREOTIDE e.g. use of lanreotide is best health care and results in prolonged survival with a NET cancer; using a the drug will improve emotional and physical health because the NET cancer's growth is controlled; improved quality of life so that you can work, enjoy activities and family; once monthly injections are convenient? etc
http://www.health.gov.au/…/Cont…/PBAC_online_submission_form

For more information please email our passionate Founder and Chairman, John Leyden at  john.leyden@unicornfoundation.org.au .

Category: Research
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