The Australian Pompe Association has been in contact with both Genzyme and Amicus in regard to the Coronavirus emergency. Sanofi has released a statement (below) on the update on the production of Myozyme.
The Association has also been in discussion with Dr Tchan at Westmead hospital in Sydney. Dr Tchan tells us that appointments may need to be amended due to the changes in the ward, to allow for the appropriate spacing between treatment chairs. We understand that spacing of chairs may be an issue in a number of other treatment centres.
Dr Tchan also advised that as the emergency develops other changes will need to be made in regard to treatment. As the situation changes weekly, daily, hourly, we will endeavour to keep our members updated by email.
We all need to be aware that as Pompe patients, many of us are in the high-risk category and going to the hospital for your infusion may put you at risk. These include transport, taxi, Community transport, public transport and the other patients in the hospital. If you have any concerns please talk with your treating centres.
If you are on the Amicus trial and can’t for any reason get to the hospital for your treatment, we are advised that the trial protocol allows for a patient to miss a treatment. Please check with your treatment centre. Statement by Amicus regarding clinical trials here
There is lots of information on the web on the virus, the official sites that the association is relying on are below;
Individuals who are concerned that they may have been exposed to COVID-19 or need to get tested: Call the National Coronavirus Health Information Line on 1800 020 080 or your local state or territory website listed below.
View the latest statement from Dr Kishnani from Duke University. The link below has a good Q & A session with Dr Kishnani regarding Pompe Disease and COVID-19.
Below is also a video from the UK that has some good information. It also talks a little about “shielding”.
The following webinar focuses on how those affected by inherited metabolic diseases may be impacted by the coronavirus (COVID-19) outbreak.The webinar was organised by patient organisations working in the field of Inherited Metabolic Diseases (IMD) with the aim of addressing questions and concerns raised by the IMD community. The webinar was recorded live on Monday 23rd March; you can access the recording via the link below. Many questions were received during the webinar, we will aim to answer these in the coming days and to update the information shared, in line with current advice and guidance. Many thanks to all speakers and contributors for sharing their valuable time and experience with our community.#COVID19 #Webinar #LSDCollab #MetabolicSupportUK #BIMDG
Posted by UK LSD Collaborative on Monday, 23 March 2020
October Australian Pompe Conference & COVID-19
We have suspended planning for our 2020 Pompe forum in Adelaide, but please keep the dates of 9th to 11th October free and we will advise you later in the year what is happening.
As always any questions or concerns about treatment or care please call or email any members on the committee.