Myeloma Australia thanks all those who had their say previously and urges Australians impacted by multiple myeloma to make their voices heard as the Federal Government considers for a second time whether to fund the CAR-T cell therapy
What is CAR-T cell therapy?
CAR-T cell therapy is a completely new way of treating multiple myeloma.
A person’s T cells (immune cells) are extracted, genetically altered to recognise cancer cells, and then infused back into the person, where they seek out and destroy the myeloma.
Unlike cancer therapies that are continuous or require repeat courses, CAR-T cell therapy is a one-off procedure.
The CAR-T cell therapy, Cilta-cel has been approved for use in Australia by the Therapeutic Goods Administration (TGA) for people with relapsed refractory myeloma who have exhausted existing therapies but is not currently funded. Approval is based on the CARTITUDE-1 clinical trial which found that the therapy was effective in those who had progressed on existing therapies.
What is the Government considering?
While this therapy has been registered for use in Australia, until it received funding from Federal, state and territory governments it will only be available in Australia via clinical trials.
The Federal Government’s Medical Services Advisory Committee will consider a new funding application for CAR-T cell therapy for multiple myeloma where the disease has progressed following four or more prior therapies.
CAR-T cell therapy will be prohibitively expensive unless the Government funds the procedure.
Cilta-cel is being investigated more broadly and it is hoped that down the track it will be made available at earlier stages of the disease.
How can I make my voice heard?
Myeloma Australia and our Medical and Scientific Advisory Group have provided feedback to the government committee, but it is important that the voices of Australians impacted by multiple myeloma are heard. Please let them know what funded access to CAR-T cell therapy would mean to you and your family.
You can share your views in any of the following ways by 6 October 2023:
1. Submit your thoughts in your own words (video, recording or text) and send them to MSAC via email or post.
Email: commentsMSAC@health.gov.au
Post: MSAC Secretariat, MDP 960, GPO Box 9848, ACT 2601
2. Complete the MSAC consultation survey and send it to MSAC via email or post (as per above contact details). Click here to go directly to the survey.
*Please note that you do not have to answer every question on this survey. Parts 3 and 4 of the survey reference documents provided to the government and are not applicable to everyone. Just answer the parts you wish to or submit a response your way as below.
For more information go to www.msac.gov.au or contact our Myeloma Support Nurses on the
Telephone Support Line Monday to Friday 9am – 5pm AEST 1800 693 566
What do MSAC want to hear from me? What should I write?
It can be quite difficult to know what MSAC want to about your experience living with or caring for someone living with myeloma. The Patient Voice Initiative have many valuable resources to help you understand the process and what to write in consumer comments submission. Their resources can be found here.
They have also prepared a handy list of dos and don’ts:
Do
- Tell your story
- Be specific
- Explain what impact it has had on you. How long have you had myeloma? Was it hard to find expert clinicians, information or get your diagnosis?
- Explain how the treatments you’ve had have impacted your daily life
- Explain the reality of living with myeloma, how has this changed your life?
- Explain why having another treatment option like CAR T cell therapy is important to you and your family
DON’T
- Don’t cut and paste a pre written response. MSAC want to read individual accounts of living with myeloma
- Don’t give information about the general population. They want to hear about you
- You don’t need to explain what myeloma is or what CAR T cell therapy is. That is clearly written in the application
- Don’t try to summarise clinical trial data, that has also already been included in the application
Your submission does not need to be very long. The goal is to have as many individual submission from the community as possible to help strengthen the application and increase the likelihood that MSAC will decide to recommend cilta-cel for funding.
If you would like some help writing your consumer comment, you can contact Myeloma Australia to speak to one of our nurses via our
Telephone Support Line: 1800 693 566 or email nurses@myeloma.org.au