PBAC reviews new treatment

Thursday, December 21, 2023
PanKind advocates for improved outcomes for all Australians affected by pancreatic cancer.

The Australian Government Pharmaceutical Benefits Advisory Committee (PBAC) will be meeting in March to evaluate whether a new treatment should be funded for metastatic pancreatic cancer. This means that, instead of the patient paying for this treatment, it is reimbursed by the Government.

The new treatment is irinotecan (Onivyde) for use in combination with oxaliplatin, 5-fluorouracil, and folinic acid/leucovorin, for the first-line treatment of metastatic pancreatic cancer will be funded as part of the Pharmaceutical Benefit Schedule (PBS). We have previously mentioned the clinical trial for this drug that has shown for some people that it improves overall survival.

People who have been prescribed this drug (or believe they could potentially use this drug in the future) are encouraged to make a submission.

The PBAC welcomes input from patients, carers, health professionals, consumer groups or organisations and members of the public on medicines submitted for PBAC consideration. The PBAC considers these public consultation inputs when considering the clinical and economic evidence presented by the applicant.

FOR PATIENTS WHO ARE / WERE ON THE DRUG HOW TO SUBMIT YOUR COMMENTS BY 31 JANUARY.

  1. Online using the submission form Public consultation on items to be considered by the PBAC (March 2024) - Page 1 of 6 - Office of Health Technology - Citizen Space
  2. Email the PBAC directly: CommentsPBAC@health.gov.au
  3. Send a letter: PBAC Secretariat, MDP 952, Department of Health and Ageing, GPO Box 9848, Canberra ACT 2601
  4. If you feel comfortable, please also send this information to PanKind at info@pankind.org.au.

The only way the Government can understand what is important to patients is by hearing your story/personal experiences.

Here are some tips to help you show how the drug has helped you (or someone you know), and the impact it has had on daily activities and work.

WHAT DIFFERENCE HAS THIS DRUG MADE TO YOUR LIFE?

If you were unwell before treatment, it is really important to describe the difference between that time and now, and the effect the drug has had on your life. Use the tips below to show the difference the drug has made to your symptoms, side effects, and quality of life compared to

(a) before treatment with this drug, and

(b) other treatments you have tried. Explain what those improvements have allowed you do, see or feel.

HOW WELL DO YOU LIVE YOUR LIFE?

Below are some of the suggestions of differences that the drug may have made to your life. If any of the following apply please include this in your submission.

Has it allowed:

HOME & FAMILY LIFE
Play with my (grand)children
Contribute to home life Mow the lawn, gardening
Be a role model to my family
Prepare and cook meals

SOCIAL LIFE

Engage in social activities
Attend functions
Enjoy holidays
Take my dog to the park
Take up an old/new hobby Able to leave my room/house

WORK & COMMUNITY

Able to work/return to work
An active member of the local community
Do volunteer work
Participate in community events
Be a listening ear to friends

EMOTIONAL & PSYCHOLOGICAL

More motivated and positive
Less frustrated/emotional
More confidence Less depression/anxiety
Feel stronger within myself
Achieve the goals I set

EXPLAIN THE DRUG’S EFFECT ON YOUR QUALITY OF LIFE:

What have the changes or improvements meant to you? How this has changed everyday life for you?
Use your LIVED EXPERIENCE to describe what difference this drug has made to your life.
What has this drug has allowed you to do, see or feel? If you have responded to the drug well, describe what this has meant to you? How this has changed everyday life for you?
What can you do now that you couldn’t do before? Do you have more independence, engage in social activities, still drive a car, mow the lawns, shop, or go to work?
Or are you in bed most of the day because the drug is making you feel unwell? Do you need care to help you shower, get dressed & feed?

Examples: Back doing things you love, back at work, going away on holidays, celebrating a special occasion, see the birth of a child, turn your dreams into a reality, your sports team winning a grand final, socialise with friends, or develop deeper connections with loved ones.

COMPARE YOUR EXPERIENCE ON DIFFERENT TREATMENTS:

How did you feel on PAST treatments vs THIS treatment?
How has this treatment changed everyday life for you? Example: Side effects Does this drug have different side effects to other treatments you have used? If the side effects of past treatments (eg chemotherapy) were much worse than the ones you experience on this drug, talk about what your quality of life was like at that time compared to this drug?

Example: Drug is taken in a different way
Does this drug have different form to other treatments you have used in the past (eg tablet instead of injection)?
Do you need to take it less often (eg once a week instead of every day), or at a different time of day? Talk about the difference has this made to your life.
Examples: more convenient, fewer doctor’s appointments, less time off work, gives you more time to spend with family, allows me more flexibility so can travel away from home for longer.

WHAT ARE THE FINANCIAL IMPLICATIONS (MONEY)?

What is the financial impact of this drug on you and your family?
If you have had to pay for this drug, is this something you can realistically continue to do?
What strategies have you had to use for you to pay for this drug? Examples: Fundraising Websites? Community fundraisers? Re-mortgage your home? Sell your home?

IMPORTANT If you have bad side effects on this drug, it’s important to be honest about this, but also say whether you have been willing to tolerate the side effects and why?

FOR PATIENTS WHO FOR FAMILY, FRIENDS & EMPLOYERS DIDN’T RESPOND TO THE DRUG

Even if you are a patient who has failed to respond to the treatment, you can write in and explain what it would have meant to you to have had a response - what you would have done with the extra survival time, had the drug worked more effectively?
The Government likes to hear many different perspectives so they can better understand the value of these drugs on the human life. This includes asking family members, friends and employers to write a submission.
In their opinion how has this drug affected your QUALITY OF LIFE?
Examples: Are you able to still drive, do the grocery shopping, shower and dress yourself, wash the clothes, attend social functions.