Interested in Joining a Consumer Advisory Council?

What’s next? Alexion is responding to the findings of the recently issued Infographic (found below) by establishing a Consumer Advisory Council to guide the development of tools to improve how the healthcare system supports people living with gMG in Australia. SenateSHJ, a health communication and research agency, is supporting Alexion with this work.

Would you be interested in helping shape those resources?

If so, you are invited to submit an expression of interest to get involved. Participation would require approximately 4 hours of your time. This will include a 30-minute phone or video call at a time that suits you, and participation in a 2–3 hour virtual meeting – likely in early May. You will be remunerated for your time and they will work around your work/personal life schedule to suit your needs.

If you are interested in joining a Consumer Advisory Council, or just finding out more, please use this link to answer some brief questions about you and your experiences with gMG and Senate SHJ will be in touch!

Header:
"The Impact of Generalised Myasthenia Gravis (gMG): A 2024 survey of 80 Australians living with the condition found"

Section 1: Significant Impact on Daily Life

7 in 10 reported a high impact on their social life

6 in 10 reported a high impact on their personal life

5 in 10 reported a high impact on their professional life

1 in 2 had to retire early due to gMG

A small illustration of people in various life contexts (e.g., socialising, working, carrying a plant box)

Caption: Restricted social life, loss of independence and the ability to plan activities were the most reported impacts.

Section 2: Unmet Support Needs

30% feel lost managing gMG

37% are not confident managing flare-ups

37% wish they knew more about gMG

35% feel they don’t have good control over their gMG

Accompanied by icons (question mark, uncertain woman, books, caution symbol)

Section 3: Healthcare Support

7 in 10 want more support from the healthcare system

Visual of diverse healthcare professionals

Footer:
Alexion Pharmaceuticals logo, legal details, and reference ID: January 2025. AU/M/AIU/gMG/0002
Header:
"They want healthcare professionals to have a better understanding of daily life with gMG"

Quote:
"Life with gMG is not smooth. You have no idea what each day is going to bring... Doctors have no idea about the lived experience so you can feel very much alone."

Main Stats:

4 in 10 do not believe their specialist understands the impact of gMG on their daily life

A third to a half of people said their specialist never asks about the impact on their social, professional, or emotional life

Greater frequency of engagement with specialists is preferred

Illustration of a person sitting with arms wrapped around knees, looking sad

Quote box:
“I think the biggest issue is …medical practitioners and related service providers have little to no knowledge of MG so it’s really difficult to get the appropriate support with any great level of detail.”

Survey Demographics (bottom section):

Gender: 58% female, 40% male

Work status: 45% retired, 28% working, 19% unable to work, 6% other

Location: 64% metro, 46% regional/rural

Age: Pie chart showing respondents' age groups, largest being 61–70 years (35%) and 51–60 years (31%)

Geographic distribution: Map of Australia highlighting states where respondents live – NSW/ACT 33%, VIC/TAS 26%, QLD 20%, WA 11%, SA 9%, NT 1%

Footer:
Alexion Pharmaceuticals logo, legal details, and reference ID: January 2025. AU/M/AIU/gMG/0002