The power of patient advocacy is essential in improving health care navigation, patient-clinician dialogue, and the wider patient experience. 

In the inherited (genetic) high cholesterol space, there is a gap in awareness and understanding of FH with the general public, most levels of health care, and with policymakers resulting in 90% of affected individuals remaining undetected.

There is an ongoing challenge to advocate with clinicians that FH cannot be treated as simply high cholesterol. It is a genetic condition that is present from birth and untreated or sub-optimally treated leads to premature coronary artery disease, and early risk of heart attack. This challenge results in a gap for patients knowing where and how to seek help.

FH Australia was founded by patients with a lived experience of FH to address these gaps, operating on the principles of patient advocacy, and representing the patient voice for those living with inherited high cholesterol.  Patient advocacy provides a platform for patients to share their experiences, needs, and concerns, humanising the realities of living with FH and other inherited high cholesterol disorders.

Change is an incremental and iterative process of slowly influencing clinicians and policymakers and upskilling patients by clearly and consistently articulating our messages and experiences, by insisting that we be involved at all levels of conversation about FH,  and through the recognition that patients are the experts of their FH lived experience. 

Without skilled patient advocates partnering with FH clinical and thought leadership, advancement in detection and treatment opportunities will be less effective, and new therapies less likely to be successfully brought to market. 

At FH Australia, we are growing a community of patients who can be empowered to be active participants in shared decision-making with their health clinicians while also becoming advocates at a broader level to bring attention to inherited high cholesterol disorders as a public health issue, translating advocacy into real change.