Joyce – Page 4 – Myasthenia Gravis

Discussion Paper Regarding Covid-19 – Update 1

Discussion Paper Regarding COVID VACCINATION

In response to the many and varied conversations from the MG Community regarding the safety and considerations to be made in evaluating the suitability of the MG community for COVID vaccination, we are sharing a Discussion Paper. The MAA are indebted and extremely thankful to Associate Professor Stephen Reddel (neurologist), and also to those as listed by Dr Reddel, for bringing to us a highly informed discussion paper, inclusive of data, aimed to provide informed guidance on these many questions.

Dr Stephen Reddel has shared an updated version of the COVID Vaccine Discussion Paper to reflect the issues raised about blood clots. Please note the advice for Myasthenia Gravis patients largely remains the same.

To download the paper:

COVID-19-Vaccination-Discussion-NI-v9-11052021

We invite you and your families to read the information gathered. Please do share the information with fellow MG friends and with your Doctors.

MESTINON SHORTAGE

It has come to our attention that there is a supply issue with regard to the 60 mg dose of Mestinon. Supply is expected to be disrupted until late August. Please ensure you have sufficient supplies or discuss the situation with your Neurologist.

Discussion Paper Regarding Covid-19

Discussion Paper Regarding COVID VACCINATION

To download the paper:

COVID-19 Vaccination Discussion Update 1

We invite you and your families to read the information gathered. Please do share the information with fellow MG friends and with your Doctors.

KEEPING TRACK OF YOUR LIFE WHEN MANAGING MYASTHENIA

Association Management committee members regularly suggest that people keep a diary of their symptoms, medications, lifestyle impacts etc. in preparation for their visits to the Doctor.

Giving a quick overview and having a clear summary of exactly what has occurred is very useful. Naturally, in the modern world people say “What is a diary?” Well, we are lucky enough to have attracted the keen interest of the Careforia team who have created a phone APP to help you. It has been targeted for people with Myasthenia and we hope it will be extremely useful.

If you are willing to try it out, go to the App store on your phone and search for CAREFORIA (apple or google). Downloading the App is free of charge. There are some personal questions at the beginning but you can skip these by continuing through the process. The reminders and questions can be tailored to your needs and progress graphs can be created. We are assured that no data will be shared. As with all new technology you may need to persist a little to discover all the advantages.

We thank Careforia for bringing this opportunity to our community. They are happy to receive feedback.

CONSUMER RESEARCH SURVEY – IVIG

If you would like to assist with the development of future resources for this valuable program, we are looking for people to share their experience of immunoglobulin treatments. Carers are also welcome to participate.

NPS MedicineWise is looking for people who have been prescribed immunoglobulins (antibodies) as part of their treatment to take part in a short survey online and/or an in-depth interview over the phone.

The aim is to help us understand what types of information, tools and resources are helpful for people along the patient journey.
The information will be used to develop resources for consumers as part of a national program about immunoglobulins.

The survey is to be completed online and will take about 10-15 minutes. You can access the survey here https://surveys.nps.org.au/s3/2021-Consumer-Survey-on-Immunoglobulins which will go live on 19 April and be available till the 14 May.

The in-depth interview would be completed over the phone / Zoom and take between 30-45 minutes. There is a $50 gift card incentive for participation. Interviews will be available for the weeks of 19 April and 26 April. There are limited places available but to express your interest please email Angela Romero aromero@nps.org.au

If you would like to take part in this project, or need further information, please contact Lia Mahony lmahony@nps.org.au or phone (02) 8202 7105.

Discussion Paper Regarding COVID VACCINATION

Dr Reddel has put a great deal of time into sourcing the best possible information. An example of this includes joining International Conference meetings at 3am in the morning. The Discussion Paper will be made available to all Australians in electronic form via this link

COVID-19 Vaccination Discussion

We invite you and your families to read the information gathered. Please do share the information with fellow MG friends and with your Doctors.

The Discussion Paper is designed in two parts to provide a document suitable for the Patients and also for Clinicians. Please read the introduction from Dr Reddel to understand more. We strongly recommend that people share this document with their Specialists and with their General Practitioners as they seek information regarding the best choice for their individual situation. Providing the document to your clinicians in advance of your appointments will allow them adequate time to consider the information carefully and to do further research as required.

Myasthenia Alliance Australia Annual Report : 1 November 2019 – 30 October 2020.

Significant initiatives dominated a busy and productive year for the MAA Board.

Following the Chairperson’s attendance at the Rare Diseases event in Canberra in February the Board can confidently confirm that the Federal Health Department is very much aware of the rare conditions encompassed by the term, Myasthenia, and that Minister Hunt is personally familiar with the fact that there are difficulties for Australians with this condition in accessing some treatment options. It was a real privilege to be represented at the launch of the very first National Strategic Action Plan for Rare Diseases.

The MAA has continued to partner with Rare Voices Australia in advocating for people with rare disease. It is believed that the MAA played a strongly positive role in bringing about a Parliamentary Inquiry into new drugs and novel medical technologies. This is an enormous topic and the submission closure date has been extended so it will be some time before outcomes can be expected. The MAA posted a submission prior to the original closing date and took a strong focus on broader access to treatments and improved processes to encourage additional research. Dr. Blum provided support for this submission.

PBS status for Rituximab use in myasthenia has been an initial driver behind much of the communication with Federal Government departments. Regrettably, a positive outcome has not yet resulted. However, it is significant progress to confirm that the obstructive legislative issues holding back such a request have now been recognized.

Research has remained a key focus.

Dr. Stephen Reddel and Dr. Katherine Buzzard have invested a great deal of time and effort to see the eNID Project progress through beta testing and onto a group of pilot sites. A ‘soft’ launch may occur in the coming months as it is rolled out more broadly. The MAA Board has remained in close contact throughout the year.

Seeking out and supporting additional opportunities, State based or National, has been on going and there is confidence that a range of projects will come to fruition.

The MAA Medical Advisory Board remained very supportive and always keen to assist our membership as COVID challenges presented and a range of opportunities arose. The support from these busy Specialists is valued. Most sincere appreciation is expressed here.

In July, the MAA Board was extremely delighted to welcome Natalie Windle to the team. Natalie brings new skills, additional connections and broad insights to the team. This gives a compliment of 6 (all of whom are affected by Myasthenia) to take on the growing and diverse workload. Additional Board members would be welcomed.

There is a growing appetite with Government, Researchers and Pharma Companies to develop new patient care models and treatment methods. Understanding how changes may be most effective will be inclusive of consultation with patients. Being asked to share sufferer experiences should be anticipated. This information collection may take many forms. It is vitally important that the MG community take up every opportunity to discuss the condition and the care available.

Raising Awareness continues at every opportunity. The Board expects to encounter many new forms of communication in a rapidly changing world and is prioritizing the exploring, developing and educating associated with these new styles. If there are skilled people in the MG community who can assist, they are asked to come forward.

The MAA Board is only as strong as our community support allows and communicating effectively with our community is essential. Enhancing and broadening contact methods is to be explored in 2021.

Of note, the website has a new URL and it is hoped that readers of this report will bookmark the following. www.myastheniaalliance.org.au

Financially the MAA remains in a strong position.

Susan White

MAA Chairperson