Thyroid Eye Disease
Your voice matters
Why sharing your health journey matters in getting new medicines approved
Did you know that your health experiences can help the Australian Government decide which medicines and medical services to subsidise for the community?
That’s right. For example, you can have a say in which medicines are heavily subsidised through the Pharmaceutical Benefits Scheme (PBS). The challenge is that many people don’t know about this or why their comments would matter. The good news is they do matter. A lot. We’re going to tell you why.
Patient experience is at the heart of medicine
At CreakyJoints Australia and GHLF Australia, we believe that patient experience is at the heart of medicine. Therefore, patients need to participate in all conversations that relate to access to treatment, safety, or the quality of their care. We are passionate about sharing the voice of people with chronic health conditions, carers and their community to advocate for change at the community, state and federal levels of healthcare.
We can empower patients and other healthcare consumers like you to make your voices heard if you are provided with the right education and tools. Elected officials, drug manufacturers and all associated healthcare professionals must make it their goal to ensure consumers are central to all decisions.
Why your voice matters
The Pharmaceutical Benefits Advisory Committee (PBAC) is the government body responsible for deciding which medicines and medical products are made available for free or at a substantial discount through the PBS.
The PBAC is made up of doctors, health professionals, health economists and consumer representatives. They meet several times a year to consider a vast range of products (health technologies) already approved by the Therapeutic Goods Administration (TGA) for use in Australia. The processes used by the TGA and PBAC are referred to collectively as health technology assessments.
The role of the PBAC is to review all the factors that would make subsidising each product good value for money for the Australian Government. In the past, their decisions would only be based on the product’s safety, efficacy and cost compared to comparative existing treatments. They also look closely at medicines that are already available to the public in other countries and the impact that is having on patients.
Over recent decades, the increasing global emphasis on the importance of patient-centred care has been reflected in the increasing value placed on community stakeholder voices in PBAC decision-making. Community stakeholders include patients, carers, other healthcare consumers and patient organisations.
These days, “good value for money” decisions now consider community feedback on broader factors. For example:
- Whether new medicines could improve people’s quality of life, including their ability to work or socialise.
- The extent to which improved symptoms of a new medicine would also improve a person’s mental health.
- Whether existing medicines are difficult for some people to access or use.
- If there are no effective existing medicines, could a new one increase life expectancy.
- What might happen to a person if they don’t get access to this medicine.
While little research has been done so far into the effectiveness of community stakeholder input in healthcare technology assessment processes, this is a growing area of interest.
In May 2024, an extensive review of Australia’s health technology assessment policies and methods was presented to the Australian Government.1 This review emphasised the value of community stakeholder engagement in these processes. It acknowledged the tremendous quality and quantity of such engagement and called for ways it could be improved. It stated:
“Increasing transparency and stakeholder involvement is linked to improved efficiency and service delivery. Many options that improve transparency or inclusiveness are also likely to have other desirable outcomes such as timely access and efficiency.”
Success stories
There are two main ways that people like you can have a say in PBAC decisions. You can add comments to submissions we make as an organisation or you can create your own submission. Don’t worry, we can help you do that. (See our page 5 steps for sharing your comments with the PBAC for more information.)
As an organisation, we regularly support applications for much-needed new medicines that are being evaluated by the PBAC. We also often support applications for expanded access to medicines already subsidised through the scheme.
We’re proud to say that your feedback has helped to get a number of medicines on the PBAC, including:
- The expanded listing of the biologic anifrolumab (Saphnelo®) for the treatment of severe systemic lupus erythematosus (SLE).
- The expanded listing of the biologic bimekizumab (Bimzelx®) for the treatment of severe psoriatic arthritis, ankylosing spondylitis and non-radiographic axial spondyloarthritis.
- The listing of tofacitinib 11mg extended-release once-daily tablet (Xeljanz® XR) under the same conditions as the existing listings of tofacitinib 5mg for the treatment of severe active rheumatoid arthritis and severe psoriatic arthritis.
- The listing of the tablet deucravacitinib (Sotyktu®) and the biologic apremilast (Otezla®) for the treatment of severe chronic plaque psoriasis.
- The listing of Trexject® (a range of pre-filled methotrexate syringes) as an alternative to oral methotrexate for people with autoimmune conditions including severe rheumatoid arthritis and severe psoriasis.
Your input could help us get future new medicines for TED listed on the PBAC in the future and we’re very excited about that prospect. We’d really love to help you get involved. Let’s go!
Source
Further resources
Patient Voice Initiative: Resource library. https://www.patientvoiceinitiative.org/pvi-publications/pvi-resources
