About 3 years ago, I learned that Statins alone were not having an impact on lowering my lifelong burden of LDL cholesterol driven by FH. This was in spite of years of Statin therapy (begun as a young adult), good weight management, a significant exercise regime and a Mediterranean diet. 

My health clinician recommended that I needed to drive my LDL as low as possible given my clinical situation. On high dose Statin/Ezetimibe therapy, I was unable to drop below 2.0.

New therapies were on the market and available in Australia under the PBS (Pharmaceutical Benefit Scheme), specifically evolocumab (Repatha®) which was recommended in my case by my clinician. However, at the time, the eligibility criteria for a script funded under the PBS was not achievable for me, as it targeted a deliberately high threshold using a combination of maximum Statins and Ezetimibe. 

Despite doing everything right for years, having a genetic positive test for FH, and a clinical recommendation to commence Repatha®, I was only able to access it via a private script. At the time, the monthly cost was in excess of $1,000.  I absorbed these costs for a couple of months.

It was in response to this perceived lack of reason, and health equity, given my FH diagnosis and history, that I advocated to the PBS, with encouragement from my clinician, for improved patient access to Repatha®. This was my first venture into patient advocacy; and I was enormously pleased and relieved that a comparatively short time later, and with the help of other advocates, that eligibility criteria changes were recommended by the PBS Advisory Committee facilitating patient access to Repatha®.

Never underestimate the power of the patient voice. We need to be part of thought leadership in the health policy landscape; and this is where organisations like FH Australia have a critical part to play. #KnowFH