2022 marks the 40th anniversary of the Australian Myasthenic Association in NSW (MG NSW)

Throughout the year, we will celebrate this milestone and reflect on the tireless work and generous donations of the Committee and Association members over the years.

We are particularly grateful for the dedicated work of our Founder Elton Rogers who started this wonderful association along with early Committee members, contributors, and donors. The first meeting was held on 24 March, 1982.

Over the 40 years since then: we have provided important patient support and resources with a growing online and social media presence; met every three months to provide face to face support; and published over 160 newsletters.  The wider myasthenic community has benefitted from our many donations towards equipment in various hospitals, and national MG projects.

Members will receive more information about an event to celebrate our 40th anniversay in June 2022.

We’re also asking members to send in your stories and memories or share any photos that tell us a bit about the 40 years of MG NSW. Please contact us as soon as possible if you would like to contribute your stories or photos for our 40th year celebrations. We’re keen to hear from you, whether you’re a long-time or new member, so get in touch by emailing info@myasthenia.org.au or by calling (02) 4283 2815.

For more details on membership, please see our membership page.

HEALTHED PODCAST: Interview with Dr Fiona Chan – MG is on the rise.

MG NSW recently collaborated with independent medical education provider Healthed to produce a podcast interview as part of their Clinical Takeaway series.

This podcast helps to raise awareness and educate healthcare professionals about our rare disease. The interview covers issues such as the increasing diagnoses of MG, symptoms, how to test for MG, and referral and treatment goals.

The MG NSW Committee thanks Dr Fiona Chan for her time and for sharing her valuable knowledge, and the team at Healthed for making this podcast happen, particularly Dr David Lim who interviewed Dr Chan.

Listen to: INTERVIEW WITH DR. FIONA CHAN

Dr. Fiona Chan is a neurologist with a strong interest in Neuroimmunology and has been awarded multiple accolades for her clinical presentations in this field. Her work in Rituximab in Myasthenia Gravis was recognised by her receipt of the Early Career Researcher Award. As an invited speaker at the National Myasthenia Alliance Conference, Fiona is a keen advocate for the myasthenic patient population. Her beliefs in empowering her patients has led her to work closely with the Myasthenia Gravis Association of Queensland to update the official website with bespoke information on the diagnosis and treatment of myasthenic patients. She is currently undertaking a Neuroimmunology Fellowship with the Neuroimmunology department at Concord Hospital (NSW) which specialises in the safe treatment of neurological conditions requiring immunotherapy.

 

Healthed – Healthed has over 20 years of experience delivering professional development for healthcare professionals. It delivers Australia’s most popular seminars for GPs, including the Annual Women’s & Children’s Health Update. With headquarters in Sydney, Australia, Healthed is a trusted source of education for general practitioners across the country.  Its digital channels showcase leading expertise and up-to-date information on a broad range of topics relevant to medical professionals. It prides itself on its high quality podcasts, webcasts, monographs, and video content. (https://www.healthed.com.au/)

 

 

 

 

Patient reported outcome survey closing soon

Our patient reported outcome survey closes on 28 January 2022 so this is your last chance to make sure you complete it: https://redcap-bdsi.anu.edu.au/surveys/?s=PWPFW73R73   

A huge thank you to everyone who has done your bit for the research by completing the survey already. We’ve had a fantastic response so far and need just a few more to reach our target number.

Our patient voice really does matter and this survey will help inform policy and health care, as well as provide information for patients like us when assessing choices and assist our physicians in treating us and understanding quality of life impacts.

This research project is about you, the patient, sharing your experiences with the condition and with any side effects or issues from the available range of Myasthenia Gravis treatments in Australia. The project, led by Professor Steve Vucic in collaboration with ANU Biological Data Science Institute, MAA and Terumo Blood and Cell Technologies, is collecting data on the impacts of Myasthenia Gravis on patients’ daily lives, including your work, family and social aspects, and your lifestyle.

If you started the survey, please remember to log back in to complete it and be sure to work your way to the end. If you need any assistance, you can email nidhi.menon@anu.edu.au or call 1800 802 568. 

A reminder of some key tips to help complete the survey:

  • Allow around 45 minutes in total. A ‘save and return’ option is available if you need to take a brief pause.
  • Make a list of ALL treatments/medications prescribed and consider any short or long term side effects experienced as a result of these.
  • Have your diary/calendar at hand to reflect on your past twelve months. You will be asked to report on your current MG experience and also any additional services utilised in this period.

Thank you again to everyone for supporting this project and contributing to this valuable research for our patient community in Australia.

MAA Covid-19 Vaccination Announcement

Dr Stephen Reddel would like to draw attention to the announcement made by ATAGI in regard to a booster Covid Vaccination for people who receive immune suppressing treatment.
He writes – Please be aware of the statement 24.12.2021 from the Australian Technical Advisory Group on Immunisation (ATAGI) about the COVID-19 Omicron variant and the timing of COVID-19 booster vaccination, here: https://www.health.gov.au/news/atagi-statement-on-the-omicron-variant-and-the-timing-of-covid-19-booster-vaccination.
Of particular note, patients who are immunocompromised, including some of the medications used for conditions such as Myasthenia Gravis, are now recommended to have three primary vaccination doses plus a fourth dose booster ideally at 3 months after the third primary dose.
Dr Reddel summarises by saying – “For clarity, this means the initial two doses at the recommended interval for that vaccine, then a third primary dose (previously known as a booster) 2 months later either Pfizer or Moderna, then a 4th booster dose ideally 3 months after the 3rd dose, again either Pfizer or Moderna.” 

Please note that this information may be useful for patients and their treating doctors but does not constitute medical advice.

Rituximab PBS listed!

Consistent lobbying, in combination with informed and respectful conversation, has resulted in a solution being found to the Myasthenia Gravis Community Request to have Rituximab listed as a PBS supported treatment for Myasthenia Gravis.

The MAA were keenly aided in this process by Rare Voices Australia (RVA). RVA CEO, Nicole Millis, navigated the pathways to making Government contact and to having our challenges understood. It was necessary for the MAA to illuminate the inadequacies in the current system. In this regard we very much thank the Pharmaceutical Benefits Advisory Committee for finding a pathway to achieving this outcome.
Rituximab treatment for people with Myasthenia will now be uniformly available through the PBS. Out of pocket expenses will be equitable to all patients. Gaining access will not depend on the depth of the private wallet or the particular hospital a patient attends. Clinician treatment choices will not be restricted with regard to this option.
During the past two years, many people, including a significant number of our Politicians, have taken the required time to hear the complicated issues and to support obtaining a positive outcome. Particular recognition is given to Health Minister Greg Hunt, Dr Mike Freelander MP and Trent Zimmerman MP.
The MAA would also like to recognise the contribution and support of our membership during this process and trust that many will benefit from this outcome.

RECOMMENDATIONS ON THE USE OF A 3RD PRIMARY DOSE OF COVID-19 VACCINATIONS FOR PEOPLE SEVERELY IMMUNOCOMPROMISED 

 Exciting news! 

 The Federal advisory body ATAGI (Australian Technical Advisory Group on Immunisation) has recommended a booster/supplemental Covid-19 vaccination for those who are heavily immune suppressed. The Health Minister has indicated that this will be available from 11 October. This gives the MG community a chance to strengthen our response to the vaccine and increase our safety. It is available in the period 2-6 months post the second vaccine. The MAA strongly recommend that everyone on immune-suppressing medications/treatments discuss this opportunity with their treating Doctors. Pfizer and Moderna are the vaccines suggested for this purpose but the AstraZeneca vaccine can also be considered. ATAGI also state that “Serology assaying is not currently recommended before or after the 3rd doses as variations in assays and a lack of accepted correlation of protection make interpretation difficult”.

More details can be found here: https://www.health.gov.au/resources/publications/atagi-recommendations-on-the-use-of-a-third-primary-dose-of-covid-19-vaccine-in-individuals-who-are-severely-immunocompromised.

Dr Stephen Reddel will be producing an updated “Covid-19 Vaccination Discussion Paper – immune-mediated neuromuscular diseases” and this will be distributed as soon as it comes to hand.

Please note that supporting documentation will be required to obtain a Covid-19 3rd vaccination and currently this does not seem to be readily available so perhaps make enquiries when booking.

The Myasthenia Alliance Australia Requests Your MG Story for Research!

The “Myasthenia Gravis Patient Reported Outcomes Survey” Research Project is now ready for patient input! Please take the time to tell of your experiences with the available range of Myasthenia Gravis treatments and also indicate if there are any resultant issues which have required additional medical attention.
This significant, highly professional and exclusively Australian research project aims to give:
  • insight into what treatments are being made available across Australia for Myasthenia Gravis patients; together with
  • the impacts of and the patient tolerance for these treatments.
The data will be analysed promptly with the results providing invaluable information to patients when assessing choices, to clinicians when making recommendations, and to government departments when prioritising access to treatment options.
This project is a collaboration between Neurologist Professor Steve Vucic, an internationally recognised and award winning researcher, ANU Biological Data Science Institute, MAA and Terumo Blood and Cell Technologies as an industry partner.
This digital survey can be found here. 
To make it as easy as possible for every person to complete the survey it is suggested that you prepare by doing the following:
  • Allow around 45 minutes in total. A ‘save and return’ option is available for those who need to pause.
  • Ask for support if you do not usually access technology. Call 1800 802 568 to discuss or email info@mgaq.org.au. Consider seeking support from family and friends.
  • Making a list of ALL treatments/medications ever prescribed.
  • Considering any short or long term side effects experienced as a result of the medications.
  • Have your diary/calendar at hand to reflect on your past twelve months. You will be asked to report on your current MG experience and also any additional services utilised in this period.
  • Refer to the ‘Participant Information Sheet’ to understand more.

The minimum participation target for this project is 350 respondents. This will give impressive and guiding information from our cohort. Please don’t think that others can make this happen. We need support from everyone with an MG experience. For over 18 months, the MAA volunteer board, have been dedicated and committed to bringing this important opportunity to our members. Please reward these workers with your time and knowledge.

Thank you for your support,
Susan White (MAA Chair)

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

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 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

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.

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

Thymoma and Covid 19

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.