Lillian Leigh is incredibly proud of her daughter – she describes her as being smart, funny and winning awards for things she loves.
She says she shares her pride in her daughter’s achievements not to brag, but because life could have been very different for her family.
When her daughter was just three years old, Lillian was diagnosed with non-small cell lung cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs.
“If I wasn’t around and able to live in the way I have the last nine years, where would she be now?” Lillian says.
Lillian was able to access a new targeted treatment on a clinical trial, taking tablets each day and with minimal side effects.
She’s been able to celebrate birthdays, hold baby nieces and nephews, and soon she’ll see her daughter graduate from primary school.
She’s also been able to contribute to society as a class parent at school, a patient advocate, and a lawyer.
But none of those things are currently factored into funding assessment decision-making.
Lillian shared some of her experiences at the launch of a new report from Rare Cancers Australia and Canteen, Counting the cost: How we can assess the true value of investing in cancer treatments.
Her story sits in the report alongside two other patients who are also living full lives as the result of treatments not widely accessible to patients who need them.
The report, a follow-up to last year’s Counting the cost: The true value of investing in cancer treatments, provides a model for incorporating societal value into health technology assessment (HTA) decision-making.
The current decision-making model is heavily skewed to clinical cost-effectiveness and lacks transparency about if or how other factors are considered.
For patients like Lillian, the existing metric of Quality Adjusted Life Years (QALY) is “so limited” and overlooks some of the most meaningful outcomes of cancer treatment.
The report argues decision-making must look at both sides of the equation – “the impact of providing the treatment and the ramifications of denying access”.
It uses a social return on investment model, developed by HTANALYSTS, to capture and value factors like the ability to attend work or school, mental health benefits, enabling families to celebrate milestones together, and hope for the future.
Using this information, the Pharmaceutical Benefits Advisory Committee (PBAC) would have a combination of the existing quantitative data, derived from clinical trialsresearch studies performed to test new treatments, tests or procedures and evaluate their effectiveness on various diseases and limited patient input, and rich understanding of the intangible value of providing subsidised access to a treatment.
This approach would allow HTA decisions to truly represent the value of cancer therapies, making a genuine difference to individuals living with cancer, their families, and society.
To read more about how social return on investment could be used to shape more robust HTA decision-making, download a copy of the report, Counting the cost: How we can assess the true value of investing in cancer treatments. <hyperlink – https://www.rarecancers.org.au/page/180/counting-the-cost-how-we-can-assess-the-true-value-of-investing-in-cancer-treatment>
You can also watch the webinar from the launch event below: