Non-commercially available medicines

TAMS has no role in prescribing decisions, or in the facilitation, arrangement or coordination of prescriptions, medication supply or access processes. Decisions regarding prescriptions, access and treatment are made by a qualified prescribing practitioner, with coordination occurring directly between the prescriber, patient and the relevant compounding pharmacy.

TAMS does not recommend or endorse any specific pharmacy. Any pharmacies or services referenced on this page are provided for general informational purposes only. The availability of all raw compounds needed for various medications cannot be guaranteed and is subject to regulatory requirements, provider-specific policies and business decisions.

In some cases, people living with mast cell activation disorders may be recommended medications that are no longer commercially available in Australia or Aotearoa New Zealand, or that have not yet become available in these regions. Where this occurs, alternative access pathways for prescription medications such as pharmaceutical compounding and established government-regulated access schemes may provide options to maintain or achieve appropriate access to treatment under medical supervision.

Compounded medications

TAMS has compiled a list of compounding chemists from around Australia to assist individuals requiring compounded medication for their MCAD. See below.

Pricing for compounded medications

Compounding chemists are free to set and adjust their prices as they see fit. As such, we recommend seeking multiple quotes, including from interstate chemists. When you find an agreeable price, it can also be beneficial to ask if the chemist will “lock in” pricing for the duration of repeats on the script. Please note this is not required and policies will vary between businesses. See a list of compounding chemists below.

Australian compounding chemists

Aotearoa New Zealand compounding chemists

Coming soon

Alternative supply options (commercial medications)

In some instances, your specialist may recommend access to a medication that is not commercially available in Australia but is approved for use in another country. Where this occurs, access may be possible through established Australian regulatory pathways administered by the Therapeutic Goods Administration (TGA) in Australia, and through prescriber-led access pathways overseen by Medsafe in Aotearoa New Zealand.

Australia

The Special Access Scheme provides for registered medical practitioners to apply to the Therapeutic Goods Administration (TGA) to prescribe an unapproved medicine for an individual patient when it is considered clinically appropriate and no suitable alternative is available in Australia. Applications can only be submitted by a medical practitioner who is eligible to apply for the specific medication group, with some medications only available for consideration under support of a specialist. Applications are assessed on a case-by-case basis, taking into account the individual clinical circumstances, available evidence and safety considerations.

The Personal Importation Scheme allows patients with a valid prescription to import a limited supply of a medicine that is not included on the Australian Register of Therapeutic Goods (ARTG) for personal use, provided the medicine is not restricted or prohibited and is intended for the treatment of the individual importing it. Strict limits apply to the quantity and duration of supply.

Please consult your specialist to determine the most appropriate access pathway for your situation.

Aotearoa New Zealand

Personal importation of medicines is regulated by Medsafe, Medicines Control, and the Aotearoa New Zealand Customs Service. Personal importation allows Aotearoa New Zealand residents to have medicines sent from overseas suppliers for their own use or for immediate family members, provided all regulatory requirements are met, including a valid prescription or written authorisation from a New Zealand-authorised prescribing clinician.

Medsafe generally discourages importing medicines that have not been reviewed or approved in New Zealand due to safety and quality concerns; however, limited personal importation may be permitted in specific circumstances.

Please speak with your treating clinician to establish if access through personal importation can be supported in your unique case. 

Last updated 21 August 2024