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Australians living with MPN step closer to accessing Pegasys treatment

The drug interferon alfa-2a (Pegasys®) was finally listed on the agenda of the Pharmaceutical Benefits Advisory Committee (PBAC) meeting on March 8 and many Australians are awaiting the results of the discussion.

For Nathalie Cook, who was diagnosed with MPN in 2008, this achievement was especially exciting after six years of dedicated campaigning for this drug to be made available in Australia.

Nathalie attended an MPN doctor-patient conference at the Mayo Clinic in the United States in 2011 where haematologists explained how the drug interferon can cause MPN patients to go into deep molecular remission and that the newer form of interferon – Pegasys – was easier to tolerate with fewer adverse side-effects.

“It was on the flight home that I made the decision to try to get Pegasys on the Pharmaceutical Benefits Scheme for people with MPN in Australia,” said Nathalie.

She began documenting her experiences and in 2013, Nathalie had the opportunity to start treatment with Pegasys. Within weeks her hair began to grow back and her flu-like symptoms diminished.

Returning to the Mayo Clinic MPN conference in 2013 and 2015, Nathalie stepped up her lobbying efforts and was rewarded with a letter from the Health Minister. It advised that her submission was being considered at the March 8 meeting of the PBAC.

Mustering support from the wider MPN community and haematologists across the country, Nathalie also welcomed a supporting PBAC submission by the Leukaemia Foundation.

Caroline Turnour, the Leukaemia Foundation’s General Manager, Research Advocacy and Services said Nathalie’s resolve has put Pegasys on the PBAC’s agenda.

“Our combined advocacy must continue,” said Caroline. “The path to PBS listing isn’t straight forward as Pegasys isn’t registered by the Therapeutic Goods Authority (TGA) for MPN and currently this can only be done by a pharmaceutical company.”

Until it is TGA registered doctors can only prescribe this drug ‘off label’.

“I expect the requirement for Roche to sponsor Pegasys’ registration for use by MPN patients will be one of the issues the PBAC discusses at this month’s meeting,” Ms Turnour said.

“We keenly await the outcome of this meeting and are committed to working with the Government and Roche to overcome any barriers that may stop it being listed.”

Nathalie continues to be in touch with the PBAC and is pleased to report that discussions are ongoing.

“I contacted Roche today to enquire about the outcome of this month’s (June ’17) meeting with Professor Wilson, Chair of the PBAC, following Roche’s feasibility assessment of Pegasys being made available for MPN’s on the PBS. Roche told me there was no definite outcome from this meeting however discussions are ongoing. I will continue to follow developments and report back to the MPN community when I hear anything more.”

* Interferon alfa-2a* (Roferon-A®) is listed on the PBS.

Last updated on July 8th, 2020

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