Federal Member for Kooyong, Dr Monique Ryan, is today calling on the Government to give Australians living with multiple sclerosis (MS) an immediate guarantee that their treatment will not be disrupted, as uncertainty continues over the future of two vital medicines on the Pharmaceutical Benefits Scheme (PBS).
Ocrevus (ocrelizumab) and Kesimpta (ofatumumab) have this week been the subject of discussions between the Pharmaceutical Benefits Advisory Committee (PBAC) and sponsors Roche and Novartis, after a failure to agree on price reductions raised the prospect of both drugs being delisted from the PBS. Together the two medicines are used by around 13,000 Australians with MS – roughly 8,000 on six-monthly ocrelizumab infusions and 5,000 on monthly self-injected ofatumumab – covering close to half of the treated MS population.
Earlier this week, Health Minister Mark Butler indicated that he wants both drugs to remain on the PBS. Dr Ryan has welcomed that statement but says that patients and clinicians deserve to feel secure about their access to vital medicines, regardless of the outcome of pricing negotiations.
“It’s good to hear Minister Butler say he wants these drugs to stay listed, but thousands of Australians with MS have spent the past fortnight worrying about whether the treatments that keep them well will still be there for them next month,” Dr Ryan said.
“For many patients there are no substitutes for these drugs. If we want to keep Australians out of hospital, in the workforce, and as well as they possibly can be, we must ensure their uninterrupted access to the best medicines for relapsing MS,” she said.
Dr Ryan’s office has received a significant volume of correspondence on this issue from constituents and from people with MS around the country. Among them is Kooyong resident Taylor Mills, a paediatric neuropsychology registrar at the Royal Children’s Hospital, who was diagnosed with MS at 21 and credits ocrelizumab with allowing her to complete her PhD, build a career treating some of Victoria’s sickest children, and plan a future with her fiancé, after other treatments failed to control her disease.
Dr Ryan also noted the Minister’s acknowledgement that the underlying PBAC comparator and pricing rules need reform, with a review announced last September still working through its recommendations.
“This isn’t the first time PBS pricing settings have collided with patient needs this year. It won’t be the last unless the rules are fixed. I support getting comparator pricing right, but delayed healthcare reform shouldn’t come at the cost of the patients caught in the middle right now,” Dr Ryan said.
Dr Ryan is urging the Albanese government to confirm without delay that Ocrevus and Kesimpta will remain PBS-listed, to ensure that no patients face unplanned changes to their treatment, and to accelerate the Health Technology Assessment review reforms so this situation is not repeated for other high-cost medicines.
