Dear MGNSW community
The MAA (Myasthenia Alliance Australia) respectfully requests patient support in further telling the story of their experiences with all forms of Myasthenia. Please note, we are very pleased that this survey can be completed via a hardcopy option. Please call Libby on 0407 110 204 to arrange this.
Late last year Alexion asked several people living with MG to participate in an online insight gathering project that aimed to better understand the current patient and doctor dynamics so that they can help support people living with gMG by addressing unmet needs at different points in time along the patient journey.
Several members of our community put up their hands and shared their experience, which was incredibly important in shaping a real world understanding of life with MG and has assisted Alexion’s efforts to bring access to new treatment options.
The main takeaways identified gaps in what patients may need or expect and their clinical experience:
- The disconnect between HCPs and people living with MG is very real
- All people living with MG interviewed recall difficulties and challenges with HCPs at some point in their journey – especially early on
- Some doctors can downplay the impact of MG which may cause them to appear ignorant or dismissive
- People living with MG can feel underwhelmed with their healthcare experiences, under-prepared and forced to advocate for themselves
- People living with MG who are not managed by MG specialists can face a more challenging journey
- The physical and emotional rollercoaster of MG can leave many people living with MG feeling isolated and socially outcast
- Managing side effects can prevent people living with MG from reaching their own personal goal of wanting to just feel “normal”
- It can take years to get to a point where people living with MG feel some level of satisfaction with treatment
- Doctors are focused on clinical markers to judge success more often than what a person living with MG might consider their own treatment or health goal
Whilst much of what was shared and learned from the exercise will not be new to many of you, the findings have helped Alexion to develop a more robust survey that will help more people living with MG validate the gaps raised in the initial phase of the project.
The purpose of this survey is to get to an even deeper understanding of the impact of gMG on the lives people living with MG and validate the gaps needs.
The self-completed online survey will take participants about 15 minutes. We have partnered with Elbow Insights and Strategy, a market research agency that specialises in this area, to help us develop and distribute the survey.
We are hoping we can have your help in sharing this research with community members so that those interested can participate in the survey.
If you are interested in helping us, you can use the link below to preview the survey or contact us to get your personalised link. Please note participants who use the link below needs to be completed in one sitting.
If you are unable to do the survey online, then please reach out to Libby @ Alexion on libby.noble@alexion.com or text her on 0407 110 204, and she will organize to send you a hard copy.
