Dialog Box


Australian First: Charity Instigates Drug Listing for Rare Cancer Patients

30 Jun 2017 at 12:00 AM

30/6/2017: In an Australian first, Rare Cancers Australia (RCA) has successfully applied to have a rare cancer drug, Vorinostat (ZOLINZA®), listed on the Pharmaceutical Benefit Scheme (PBS), effective from 1 July 2017. The listing enables Australians with Cutaneous T-cell Lymphoma (CTCL), a rare subtype of non-Hodgkin lymphoma, to access Vorinostat on the PBS at a cost of $38.80 per script. 
This is the first time a patient advocacy group has successfully applied to have a drug for rare cancers listed on the PBS. Listings are typically applied for by pharmaceutical companies. However medicines for rare cancers are often delayed, or never reach the application phase due to the small patient numbers and the ability to meet the high evidentiary requirements. 

John Cannings, director of RCA said, “This listing is a huge step in the right direction and a monumental win for all Australians. In particular for the patients and their families who otherwise faced huge financial burden. Until the Pharmaceutical Benefits Advisory Committee (PBAC) approves more rare cancer treatments for subsidy, accessing them will remain out of financial reach for most Australians, leaving patients to decide whether they can afford to pay, or simply have to forgo treatment completely, thereby creating a two tier healthcare system.

“Today’s listing demonstrates how, with increased flexibility, we can give access to more Australians when we all work together. There is still much work to be done to make access affordable for all rare and less common cancer patients across Australia. We are very pleased with today’s listing and thank the Government for this forward progress.”

To date CTCL patients have been able to access Vorinostat via clinical trials, however, these are often difficult to access and not open to all patients.

Associate Professor Chris McCormack from Peter MacCallum Cancer Centre welcomed the new listing saying, “This is a great outcome for cutaneous lymphoma patients, whom I treat frequently. We all have an obligation to ensure that rare cancer patients, including those with CTCL, have access to the best available medicines. Access to Vorinostat may contribute to preventing progression, inducing remission and improving quality of life for patients.”

Seventy-seven year old patient, Elise said, “My CTCL has been debilitating. Slow-growing and painful cancers all over my skin appearing as plaques. Vorinostat has improved my quality of life drastically. I’m no longer living in excruciating discomfort with weeping sores when knocked, and I am no longer robbed of my self-confidence and self-esteem. I’m now able to live an active and happy life. It’s wonderful to know that it has now been listed on the PBS and will now be accessible to other patients going through, what I have been through.”

Industry reflect that if given the opportunity from Government more applications would be lodged, resulting in greater outcomes for rare cancer patients nationally.  

Riad El-Dada, Managing Director of MSD Australia and New Zealand said, “We welcomed this opportunity to work with Rare Cancers Australia and the Pharmaceutical Benefits Advisory Committee (PBAC) to find a new way to ensure that patients with rare and less common cancers gain the benefits from new therapies. MSD is pleased that the PBAC have made the decision to recommend vorinostat for patients with cutaneous T-cell lymphoma (CTCL). This is a very positive outcome for patients living with a rare cancer and their carers and families.”

For more information, please see the Consumer Medicine Information (CMI) via the following link: 

People with Cutaneous T-cell Lymphoma (CTCL) should speak to their doctor for further information. 

MSD Medical Information: 1800 818 553. 

Category: Rare Cancers in the News