4 Feb 2020

Improving the lives of people with Primary Immune Deficiency

Dr Emily Edwards
Dr Emily Edwards is committed to helping people, in particular those living with a disorder called 'Primary Immune Deficiency', or PID. Her research, in Monash University's Department of Immunology and Pathology, is on the impact of genetic mutations on B cell differentiation and function in patients with primary immunodeficiencies.

She has recently been elected Vice-President of Australia Patient Immunodeficiency Patient Support (AusPIPS) Inc., a not-for-profit registered charity, formed by a collective of people who either suffer from or care for others with PID, to provide advocacy, medical advice and support for PID patients on a voluntary basis.

Dr Edwards brings a different perspective to the group. As a scientist, she has an insight into the complex physiological drivers of the disorder, and is therefore in a position to improve the translation of research into clinical practice.

She said they would like a number of things to improve for PID patients. "One is for PID patients to understand better what happens in the research setting, how their blood samples are used in genetic analysis and immune profiling. How, ultimately, their information contributes to the understanding of the disorder, early diagnosis and tailoring of treatment for individual patients.

"Another is treatment. I have been helping the AusPIPS president, Jackie Murphy, to advocate for consistent supply of immunoglobulin treatments. The treatments are expensive, and they need to be subsidised so patients can afford continuous treatment. We are also in favour of changing the policy regarding which patients are eligible for the subsidy.

"And a third arises from the fact that PID is a rare condition, so practitioners don't know much or are not familiar with the problems. We want to see physician training improved. Conversely, I'd also like to see researcher awareness of clinical issues improved. One of the things I love about being based in a research group right next to the Alfred hospital is that I can, and do, have contact with clinicians who treat over 100 PID patients who attend Alfred clinics."

Finally, PID awareness month is coming up in April. It is run by the Jeffrey Modell Foundation (JMF). The JMF's centre in Melbourne has held two scientific symposia in 2018 and 2019. Watch this space for more activities!

See more about Emily's research and advocacy:

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