Originally published 19 April 2023, updated 12 June 2025
As patients and carers alike, TAMS is acutely aware of the wide variety of medications needed for the daily management of mast cell activation disorders (MCADs) which are not readily accessible, and/or not on the Pharmaceutical Benefits Scheme (PBS)/Pharmaceutical Schedule (NZ), for the management of MCADs.
TAMS communicates the needs of our community at every opportunity, including in ethical discussions with pharmaceutical manufacturers, dealings with Therapeutic Goods Administration, Rare Voices Australia events, conferences hosted by the Australasian Society of Clinical Immunology and Allergy (ASCIA), via Parliamentary forums and in all other appropriate engagements.
Although these efforts are ongoing, TAMS is aware of an increasing number of community members seeking to contribute to the conversation by writing to pharmaceutical companies and/or Local and Federal Government officials to highlight the need for readily accessible and affordable medications for MCADs.
As such we have created four template letters community members can use to write to Members of Parliament and Pharmaceutical Manufacturers in Australia and Aotearoa New Zealand for the purposes of seeking consideration about various medications, well established for MCAD management, being added to the PBS (AU) and Pharmaceutical Schedule (NZ), respectively.
Any questions about the letter templates can be emailed to info@mastocytosis.org.au
