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 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.

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

COVID-19 VACCINATION QUESTIONS?
Posted on Jan 09, 2021 11:10 pm
COVID-19 VACCINATION QUESTIONS?
The MAA Medical Advisory Board have issued the following advice for people with Myasthenia who have questions about the Covid vaccinations currently being discussed.
The doctors are closely monitoring information as it is made available via the TGA (Therapeutic Goods Administration) and through published papers. Currently there is little information available in regard to immune suppressed people receiving the vaccination. However, the consensus of the Doctors is that ALL patients with Myasthenia should be vaccinated when available. The Doctors will communicate further as soon as they have additional information about the proposed vaccines. The MAA and State Associations will share this information promptly via the usual channels.
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Our mailing address is:
Myasthenia Alliance Australia
PO Box 16
Mt Gravatt, QLD 1800 802 568
Australia

Copyright © 2021 Myasthenia Alliance Australia, All rights reserved.

Dr Stephen Reddel, of the MAA Medical Advisory Board, has flagged the need for anybody who has previously had or currently has a thymoma to take extra care protecting against exposure to COVID 19 as they may be more seriously affected. The following relevant article is technical but included here – https://science.sciencemag.org/content/early/2020/09/23/science.abd4585.  
For further information please contact Susan on 1800 802 568.  

Come along to our Autumn meeting .. first Saturday in March.  Learn more about MG, pick up tips on how to live with it, and make new friends.

1.30 PM, Saturday 2nd March – Ryde Eastwood Leagues Club, 117 Ryedale Road West Ryde

The Myasthenia Gravis Associations of Australia have come together under a National Myasthenia Alliance to enhance the support already offered to Australians suffering from the neurological auto-immune conditions categorised under the term ‘Myasthenia’.

MAA Alerts

WORKING FOR YOU

The Alliance Committee have been meeting at least once a month for the majority of this year and working diligently for its supporters between times. Current projects include planning for a conference in 2019. We are working with Dr Blum to create a Brisbane conference mid 2019. Dr Blum is also chairperson of the newly formed Medical Advisory Group available to the Alliance committee for advice on Myasthenia related issues. We thank him for his particular interest in the work of the Alliance. He is keenly supported by Dr Reddel, Dr Buzzard and Dr Harris. The committee are now represented on the eNID Project Working Group. The project is progressing and more information will soon follow. Feedback on our work can be made by contacting the State Associations in Queensland and in New South Wales.

RITUXIMAB QUESTIONNAIRE

A questionnaire was made available regarding access to this treatment option. Many people responded and the shared information was diverse. Many people have not been offered this treatment. For some, it has been discussed but it has not been a viable choice for varying reasons. For others, this treatment has been used and for most it has been provided by a major hospital for no or little cost to the patient. There are a number of people who have chosen this treatment but have paid ALL or at least part of the cost themselves. Sums, up to the value of $16,000.00 p.a. have been reported. Private Health Funds seem to be providing varying levels of assistance – usually above the policy requirements. An introductory letter has been sent to Minister Hunt to discuss this varying availability. Currently, the plan is to submit a more formal letter to Minister Hunt prior to the end of the year. Additional supporting information continues to be sourced. Whilst it is hoped that this matter can be successfully raised with the Minister, any resultant outcomes are quite unknown.

MG VERSUS MGen

An unfortunate media release occurred in July this year. In discussing the Sexually Transmitted Infection, Mycoplasma genitalium (Mgen), a reference was made to this condition using the acronym MG. This is not the standard abbreviation used for this condition but unfortunately it was picked up by the journalists as a good headline. The article was shared with multiple media outlets and came to our attention via concerned members. Many letters have been sent from the Alliance highlighting the difficulties which may result from confusing the conditions. Whilst controlling the use of acronyms is not an achievable objective, discussing ways to strengthen the use of the acronym Mgen for Mycoplasma genitalium became our gaol. Contact has been made with clinical researchers, major Australian Universities, Australian Sexual Health and Public Health organisations, the International Journal of Epidemiology and with sister organisations around the world including the MGFA in USA and Myaware in the UK. Overall, the response has been very supportive particularly from fellow Australians. Our sincere thanks is expressed to these Organisations and Individuals who are now aware of Myasthenia Gravis and have offered their support in maintaining clarity between the two conditions.

A very informative video!

We have updated many of the reference links in our website, start from https://www.myasthenia.org.au/background/what-is-it/

Every year, we invite members and visitors to join us at our Association meetings.  We meet once every three months – in March, June, September and December.

The December meeting is usually our Christmas Lunch and will start at 12.00 pm at Palm Court Bistro, Ryde Eastwood Leagues Club. If you wish to attend please email info@myasthenia.org.au with your name and how many will be in your party.

All myasthenics and their supporters are welcome.