Availability of Topical Sirolimus
Topical Sirolimus is a treatment for facial angiofibromas that are common among people with TSC (Tuberous Sclerosis Complex). A clinical trial to test the effectiveness and safety of topical Sirolimus cream at 0.5% and 1% is currently being conducted, and the results are hoped to lead to the approval of topical Sirolimus by the Therapeutic Goods Administration (TGA).
In the meantime, many people in Australia living with TSC are using topical Sirolimus for ‘off-label’ use, which means it is not officially approved for this purpose. This page provides general information only and does not constitute medical advice. Patients are advised to consult their doctors for more information about the suitability of this medicine for their individual case.
There are two steps involved in obtaining the cream:
- First, consult a dermatologist who may prescribe topical Sirolimus;
- Second, fill the prescription at a pharmacy that is able to make the cream.
State government reimbursement is currently available for patients who have been prescribed the medication through:
- Perth Children’s Hospital in WA,
- The Royal Children’s Hospital in Melbourne,
- TSC Clinic at Queensland Children’s Hospital in Brisbane.
All of these require the prescription for the cream to be filled at the pharmacy associated with the hospital.
- Westmead Hospital TSC clinic in Sydney provides Sirolimus cream through the hospital pharmacy and is funded by the hospital
Private health insurance extras policies may also cover the medication, and funding can be obtained in New Zealand through Pharmac under a special authority. Patients in New Zealand are advised to ask their doctors to apply for a special authority from Pharmac to fund the cream.
To find a dermatologist, patients can ask their GP or their child’s pediatrician for a referral or consult the list of practicing dermatologists available here.
To find a dermatologist with experience prescribing topical Sirolimus, you can contact us at TSA.
Some people have had the cream prescribed by their GP, a paediatrician, or paediatric neurologist.
Only some pharmacies, called ‘compounding chemists’, have the necessary skills and equipment to make the medicine, and only a small number of them are currently making topical Sirolimus.
Pharmacies known to be making topical Sirolimus in Australia (as at February 2023)
VICTORIA
Pharmacy: Wood Pharmacy
Address: The Royal Children’s Hospital, 1st Floor, 50 Flemington Road, Parkville VIC 3052. Note that this is not the hospital pharmacy.
Contact details: (03) 9345 6500
Recipe: 0.1% in a white soft paraffin ointment. Other strengths possible, including 1%.
Approximate cost: Sirolimus 0.1% Cream/Ointment: 15g $39.95, 30g $69.95, 60g $109.95
Sirolimus 1.0% Cream/Ointment:15g $69.95, 30g $109.95, 60g $189.95
Pharmacy: Clayton Central Pharmacy
Address: 373A Clayton Road, Clayton, Victoria, 3168
Contact details: (03) 9544 3644
Recipe: Only making Sirolimus 0.1% in cream and ointment base at the moment
Approximate cost: Sirolimus 0.1% Cream/Ointment: 15g $39.95, 30g $69.95, 60g $109.95.95
QUEENSLAND
Pharmacy: Custom Compounding
Address: Suite 5/166 Gooding Drive, Merrimac,QLD, 4226. Your local pharmacy may also be able to work directly with Custom Compounding to order the cream.
Contact details: 1300 731 755; https://customcompounding.com.au
Recipe: Currently making 0.1% and 1%. Please contact for more information about recipe and other strengths.
Approximate cost: Sirolimus 0.1% Cream/Ointment: 15g $39.95, 30g $69.95, 60g $109.95
Sirolimus 1.0% Cream/Ointment:15g $69.95, 30g $109.95, 60g $189.95
NEW SOUTH WALES
Pharmacy: Riverview Pharmacy
Address: 61 Tambourine Bay Rd, Riverview, Sydney NSW 2066
Contact details: (02) 9427 5245 https://riverviewpharmacy.com.au
Scripts can be emailed to [email protected] or faxed to 02 9418 3584.
Recipe: 0.1% in white soft paraffin. Other strengths possible to 1%. Please contact us for further information on other strengths and formulations
Approximate cost: Sirolimus 0.1% cream/ointment: 15g $39.95, 30g $69.95, 60g $109.95
Sirolimus 1.0% cream/ointment: 15g $69.95, 30g $109.95, 60g $189.95
Pharmacy: My Community Pharmacy
Address: 310 Sandgate Rd, Shortland NSW 2307
Contact details: (02) 49558180 email [email protected]
Pharmacy: Custom Med (formerly Eastlakes Pharmacy)
Address: 1/135-139 Belmore Rd, Randwick 2031
Contact details: (02) 93266515 Fax: (02) 93266545 Email: [email protected] www.custommed.com.au
Recipe: 0.1% in base cream. Other strengths can be compounded, please contact the pharmacy for more information.
Approximate cost: Sirolimus 0.1% cream/ointment: 30g $70, 60g $110
WESTERN AUSTRALIA
Pharmacy: Clinicare Compounding Pharmacy Maylands
Address: 245 Guildford Road, Maylands WA 6051
Contact details: (08) 9370 4410 email [email protected]
Recipe: Sirolimus 0.1% ointment. Other preparations and sizes can be made, please contact the pharmacy for more details
Approximate Cost: 30g $45.00
In New Zealand
Tuberous Sclerosis Complex New Zealand recommend asking your dermatologist to recommend a compounding pharmacy who will turn the subsidised tablets into a cream for a compounding fee usually less than $50. Gisborne Hospital Pharmacy has compounded it and sent it to patients around the country.
Internationally
The Australian pharmacies listed above are willing to express post to families within Australia and internationally on request. There are laws in Australia governing supply of Rapamycin that restrict supply to only be provided to fill a prescription written by a doctor registered in Australia.