Australia's PBS Pricing Dispute Threatens Access to Life-Changing MS Treatments

A dispute over how Australia prices medicines has sparked fears 10,000 people with multiple sclerosis will be forced to pay up to $33,000 a year to access life-changing treatments.

The Pharmaceutical Benefits Advisory Committee will meet today to discuss the price of two medicines used to treat MS and related conditions currently subsidised by the federal government, after drugmakers rejected a request to slash the cost by up to 50 per cent.

MS advocates and patients have warned losing subsidised access to the "very effective" drugs, known commercially as Ocrevus and Kesimpta, would cost some people their lives.

Health Minister Mark Butler has declared he wants the medicines to remain on the Pharmaceutical Benefits Scheme (PBS) and has linked the dispute with global drugmakers Roche and Novartis to changes in US policy.

Australia's PBS system, which Roche has criticised as "archaic", categorises medicines by grouping different drugs that provide similar safety and health outcomes together.

The cheapest drug in that group then acts as a benchmark price for the rest.

The PBS listing of a third therapy, sold under the brand name of Briumivi at a substantially lower cost, late last year, triggered a review of pricing for other medicines in the same group, like Ocrevus and Kesimpta.

The ABC understands selling those two commonly used therapies at the lower price would require a 40 to 50 per cent cost cut, which the drugmakers have argued is commercially unsustainable.

Pharmaceutical companies are also increasingly sensitive to accepting lower prices overseas because the US is pursuing a "most favoured nation" policy that links American drug prices to those paid in comparable countries.

PBS call 'life and death' for Australians

The political stoush over PBS pricing battles is deeply personal for Melbourne content creator Jaimie Rose Sheil, who has a related MS condition called neuromyelitis optica (NMO) and uses a wheelchair.

Like MS, the autoimmune condition targets the nervous system and can cause spinal cord injury, blindness and brain lesions.

"Without an ounce of drama, these decisions about the PBS and use of Ocrevus could really cost my life," the 27-year-old told the ABC.

"Ocrevus is one of three immunotherapies I am on to control my disease and if NMO is left to progress, it can very quickly be fatal.

"So, this decision really is life and death for me."

Ms Sheil has been using Ocrevus for more than two years, and said she could not afford to pay about $33,000 a year for the treatment privately if the medication was taken off the PBS.

"There's a lot of fear that people will be taken off medications that have worked for them for years and years and they don't know what their future looks like because of that," she said.

"In the end it will cost the government far more in public health care, hospitals and the NDIS."

Health Minister wants MS drugs to remain on PBS

MS Australia deputy chief executive officer Julia Morahan said the removal of the two "very effective" drugs from the PBS would be a "devastating loss" for the estimated 10,000 patients currently using them.

"These medications keep people stable, they give them a better quality of life, they reduce disability, they allow people to remain in the workforce," she said.

"This is money well spent on people living with MS and able to live their best possible lives."

Dr Morahan said Australia had a "wonderful history" of subsidising disease-modifying therapies for MS and the organisation was "proud" that patients had a "full suite" of options to choose from depending on their individual medical needs.

"We would urge all the stakeholders in this particular situation to work together to try to find a resolution," she said.

Mr Butler said the government's view was the two drugs had been delivering "enormous benefit" to many Australians living with MS for "quite some time" and should remain listed on the PBS.

"The advisory committee, which is the experts … that provide advice and have for many years to government about what drugs are on the PBS is considering these two [MS] drugs at their meeting this week and I'll wait to hear the outcomes of that," he said.

Mr Butler said many drugs were experiencing a "level of dislocation" due to price changes particularly in the US and also in China, which has meant "companies are taking a different view" about some medicines.

PBS price system labelled 'archaic' in headache for federal government

Roche Australia general manager Nic Horridge confirmed the Department of Health had stipulated there must be a "substantial price cut" for Ocrevus to "remain on the PBS".

"This cut, should it stand, would make it impossible to keep Ocrevus on the PBS and would lead to the Australian government removing [it]," he said.

Dr Horridge said "archaic" pricing structures for medicines subsidised by the Commonwealth were disrupting the "continuity of treatment" for thousands of MS patients.

He warned Australia was at risk of falling "further behind global standards of care" if the industry was unable to bring new medicines to the country in the future.

The government has recently found itself embroiled in several protracted high-profile stand-offs with major pharmaceutical companies over PBS pricing policies.

Last month, the ABC revealed drug company AstraZeneca would remove critical breast cancer drug Zoladex from the Australian market because of commercial reasons, while in April, Eli Lilly withdrew diabetes drug Mounjaro from the PBS listing process, airing a cluster of grievances, including that the price Australia was willing to pay for the drug was too low.

When drugs are placed on the PBS, patients are able to receive their medications at a small portion of the cost: currently $25, or $7.70 for concession card holders.

US pharmaceutical companies have also been lobbying against the scheme, arguing its pricing processes undervalue innovation and threaten billions of dollars in lost sales.

The way drugs are grouped together and benchmarked to a lower-cost competitor was identified as a key area needing change in a 2024 review of the PBS system, which made several recommendations aimed at streamlining processes.

An advisory group is guiding the government's response to that review, but the pharmaceutical industry has argued there is a need for more urgent action.

The government has also argued its negotiations with drug companies over the PBS are essential for keeping the scheme sustainable and affordable.