Mestinon Shortage – December 2nd

MAA update on Mestinon supply – 2 December 2022 

The MAA continues to stay abreast of the Mestinon supply shortage issue and is in regular contact with government and industry stakeholders. The latest update for Timespan (180mg) and 60mg is below. 

Timespan (180mg): Section 19A approval is extended to 31 May 2023 (previously approved until 30 November 2022) and this is listed for subsidy under the PBS. This means you should pay what you normally pay for your Mestinon Timespan script. Medsurge Healthcare is currently assisting with the import and supply of this product. Please get your scripts in so that your Timespan can be ordered. 
  

60mg: Section 19A approval has now been confirmed to 31 May 2023, however the PBS subsidy is not yet confirmed but we understand an application is pending. iNova Pharmaceuticals is currently assisting with the import and supply of this product.   
 

A reminder that Section 19A aims to reduce the impact of the shortages of the usual Mestinon products brought into Australia.  

 

Please ensure you take information provided by the MAA updates with you to your pharmacist to assist with the process.  

 

Thank you for continuing to support each other as a patient community and if you have any concerns or feedback please contact us: 

Email info@myasthenia.org.au or call (02) 4283 2815 

Email info@mgaq.org.au or call 1800 802 568 

Update on Mestinon Timespan – 19 November 2022

Given the current supply shortage for Mestinon Timespan (180mg), the Myasthenia Alliance Australia has previously notified our MG community that it is available under an alternative arrangement (Section 19A) through Medsurge Healthcare and you use your regular prescription for this. 

We strongly encourage you to get your script for Mestinon Timespan to the pharmacy now and please do not let your own supply of Mestinon Timespan be less than 1 month.  

Please let us know any feedback by contacting us:  

Email info@myasthenia.org.au or call (02) 4283 2815 
Email info@mgaq.org.au or call 1800 802 568 

We recognise that there are ongoing supply issues for some forms of Mestinon (particularly Timespan 180mg and 60mg) in Australia. We appreciate this can be concerning for MG patients who take Mestinon continuously and/or regularly.

The MAA supports the needs of MG patients from all states and we are working for our community to ensure there are alternative solutions for accessing Mestinon during the supply shortage. We assure you that we are actively keeping abreast of this situation. Please see recent updates below and your state associations (MGNSW and MGAQ) and the MAA will keep you as up-to-date as we can.

Mestinon Timespan 180mg is available under Section 19A, with Medsurge Healthcare using suppliers in the USA. Patients only need their regular prescription to obtain Mestinon Timespan from their pharmacy. A price can be more clearly determined once the stock arrives.

For Mestinon 60mg, if ringing around is unsuccessful, patients need to visit their doctor and ask them to complete a Special Access Scheme (SAS) form and submit this to the Therapeutic Goods Administration (TGA). Once this is approved, it will be returned to the doctor to then pass on to the patient. The patient will submit this to their pharmacist, who will use this approval number to order the medication (each script will be processed and ordered separately). The pharmacy will be advised of the cost of the medication and will inform the patient.

Please visit the TGA website regularly as this will help confirm the need for Mestinon for MG patients.

More information on Section 19A approvals to address medicine shortages is available here and more information on the SAS is here.

Natalie Windle, MAA Secretary/MGNSW President

Glenda Bidner, MAA Board Member/MGNSW Vice President

Please check your prescriptions and ensure that you’re not running too low on any of your required medications. As Mestinon is a unique product and unable to be substituted, please be vigilant if you require this medication.

Ricky Chan’s City2Surf Fundraiser

Myasthenia Gravis patient Ricky Chan is taking on the challenge of the 2022 City2Surf! This is no mean feat and MGNSW is grateful to Ricky for raising awareness of MG and raising funds for MGNSW through his City2Surf endeavours. Thank you Ricky and we wish you all the best!
To support Ricky and donate, please go to his fundraising page: https://city2surf22.grassrootz.com/myasthenia-gravis-nsw/ricky-chan-to-fundraise-for-city2surf
Ricky describes his MG journey and why he is raising awareness and funds in his own words:
“In 2017, someone caught a nasty condition. It started off with dripping eyelids, then losing strength in everyday activities bit by bit. In just 2-months time this person was on a hospital bed and wasn’t able to even move or turn his body. He was only able to take in liquid food. Doctors says if it was to get worse the ability to breathe would be going next. This…is…. myasthenia gravis.

This person was fortunate enough to have all the blessings he could’ve wished for and came through. By 2022, after some treatments, a surgery and a lot of medication, he is almost living a normal life and regained a lot of confidence in the everyday activities he could only dream of participating in. Throughout this whole time this person has had a lot of support from a lot of people and organisations along the way, including Australian Myasthenia Association in NSW.He has decided to re-train himself for the City2Surf and in the progress fundraise for this organisation and also raise awareness to this rare disease.

Anyone who read this far would’ve worked out I’m this person. It only takes a minute and any money you can give (no matter how large or small) will go a long way.

I thank everyone in advance for supporting this cause.”

Australia wide “Art With Heart” Auction

“The Myasthenia Alliance Australia (MAA) are very proud to continue the good work occurring with International June MG Awareness Month and delight in announcing the launch of an Australia wide “Art With Heart” Auction campaign in support of our condition. This Auction will run through until October and will have a focus on Art Therapy with the lead item for the Auction being a painting by our very own, Lyn Church. Lyn is an award winning Artist from the Gold Coast and she also suffers with Myasthenia Gravis. News from Lyn will follow over the coming months.

The first step in this Awareness endeavour requires us, our strong and committed Myasthenia community, to reach out to our families, friends, neighbours, workmates, health professionals, government representatives at all levels and everybody to ask for contributions to the auction. By doing this we are creating conversation! Conversation is information! Information is awareness! Contributions of all types (large, small, service based or tangible object) will be greatly welcomed. Please see the flyer and auction kit for specific details. Please call to discuss if you are uncertain 1800 802 568.

This is a major undertaking from the MAA and a first attempt to create widespread conversation. It is fully supported by the State Associations and now hopefully, by the MG community across Australia. Please do get behind this MAA campaign. Together we chip away for a better life for all.

Thanking you in anticipation.

An Artist Kit can be downloaded here

Kind regards

Susan White, MAA Chairperson

Impact of COVID-19 on Myasthenic Patients – Survey

Do you have a myasthenic syndrome?

(Myasthenia Gravis, Lambert Eaton Syndrome or Congenital Myasthenic Syndrome)?

The impact of the Coronavirus disease (COVID-19) pandemic on myasthenia gravis patients in an Australian population: a nation-wide observational study

 Your experience of the pandemic is critical to help your doctors and the public understand the impact of the pandemic on your wellbeing.
To complete a short survey (takes under 15 minutes) begin here:

https://redcap.alfredhealth.org.au/redcap/surveys/?s=WXWKWDM4CMPAJH4N

Your participation is voluntary and all information will be de-identified. This is an opportunity to give us your voice, and we sincerely appreciate your valuable contribution towards representing your experiences. Clinicians treating patients with myasthenia are also kindly invited to participate through the same link.

Principal investigators: Dr. Katherine Buzzard & Dr. Pakeeran Siriratnam
Any questions? Please email: p.siriratnam@alfred.org.au

Participant information statement

The aim of this project is to explore the various impacts of the COVID-19 pandemic on Australian patients with Myasthenia Gravis, with a focus on myasthenia management (timing and choice of immunosuppression, timing of vaccinations and access to care), quality of life and mental health.

We hypothesise that the COVID-19 pandemic has had a negative impact on myasthenia management and quality of life of our patients. The survey is exclusively available through Myasthenia Alliance Australia (MAA) and invites all patients with myasthenia gravis in Australia to participate. The survey should take no more than 15 minutes of your valuable time. The survey is anonymous. The information will be collected via REDCap and stored in a password-protected Excel document.

The results of this survey will provide clinicians and the public with an increased understanding of how the COVID-19 pandemic has impacted patients with Myasthenia Gravis. The findings are not only important as we continue to live with the pandemic in its various stages but may also provide useful information for planning and managing future pandemics. Please only complete the survey once.

There is also a survey for Clinicians. ASK YOUR CLINICIAN TO PARTICIPATE.

FOR CLINICIANS The clinician’s survey should take under 10 minutes. Your unique position as treating clinicians of MG patients during the pandemic will provide great insights into the challenges both you and your patients have faced. The focus is on the impact of your management of myasthenia (timing and choice of immunosuppression, timing of vaccinations and access to care), and the mental health impact on your patients. You will only be asked to do the survey once.

If there are any questions, please address to Dr. Pakeeran Siriratnam via email p.siriratnam@alfred.org.au

Contact details for complaints: Complaints Officer, Office of Ethics & Research Governance, Alfred Health, email research@alfred.org.au, phone 03 90763619.

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.