Patient voice paramount in developing a reimbursement system fit for purpose

Pharma News: Patients, advocacy groups, politicians, Government officials and industry representatives came together in Canberra for Medicines Australia’s PharmAus21 event, titled ‘Room for the Patient View’.

The forum included discussions about how to include patients earlier in the decision-making process, the value of medicines, better access, and medicines innovation – all of which are currently being considered by a House of Representatives Inquiry into approval processes for new drugs and novel medical technologies in Australia.

Jessica Bean, Cystic Fibrosis patient and President and Secretary, Patient Voice Initiative, said “It was not until I was on an innovative therapy that I considered that process of what it takes to get a medicine listed on the PBS. I want to make sure that the things that matter in my life as a patient were part of that process, were considered and heard by decision makers.

“Not understanding the system is one of the biggest barriers to patients being involved. They don’t know what is involved in that process and why they need to be heard. Education about that process is really important.

“We need to make sure that when patients do have the opportunity to have a voice, they know what makes a difference. They know what information is before the committee and what they want to see represented in that conversation.”

The patient community is keen to better work with government and other stakeholder who influence policy decisions to make a big structural change.

Dr Mike Freelander MP, paediatrician and Deputy Chair of the House of Representatives Committee and Member for Macarthur, commented “The world has changed. The system that was designed 40 or 50 years is no longer fit for purpose. The difficulty for policymakers is how do they get that message into the beginning of the system so the system, throughout the whole process, is informed by the patient voice. My role in Parliament is to help get those voices through to the policy makers.

“I think we need to look broader where the family voices needs to be heard because all these treatments not only have an impact on the primary patient, but on the extended family. We need a system that is future proof for the 21st and 22nd century.”

“Every member of the [Zimmerman parliamentary inquiry] committee is really invested and has heard the patient voices that have been very powerful and very moving. We feel a huge responsibility to make sure that we do the right thing by the people that have taken their time and effort to present to us.”

The time to market between registration and reimbursement of a medicine is lengthy for Australia, longer than the OECD average. We need to consider and implement best practice from other countries in expediting this timeline.

Elizabeth de Somer, CEO, Medicines Australia stated “We are working very hard, both in collaboration with the Department of Health, and the Minister and the Minister’s office, as well as with our colleagues and with the House of Reps inquiry to see if there are ways we can reduce that time and the ideal time would be simultaneous registration and a commitment to fund a medicine. We would see that as a gold standard.”

Dr Freelander MP noted “There are tentative signs of better cooperation between some of the well-recognised approval agencies around the world. We are moving more and more towards using that shared data and shared information in the approval process. I still think it is important that we have our own approval process however using the data that is already available is very valid and would allow for much more transparency.

“There is no doubt for many that for well accepted treatments there have been long delays in getting them approved for use in Australia. Our task is to make our system as efficient as possible.”

Key stakeholders, including government, industry and healthcare professionals must collaborate to raise the patient’s voice and place patients at the centre of the process to ensure a holistic view that provides both patient and economic benefits.

Prof. Andrew Spencer, Head of the Malignant Haematology and Stem Cell Transplantation Service at The Alfred Hospital, Professor of Haematology at Monash University and Head of the Myeloma Research Group, said “There has been an amazing increase, in the past decade, in our understanding of cancer biology that is leading to a huge paradigm shift. There are some therapies coming along which are truly remarkable in terms of their ability to control or eradicate a lot of cancers that we deal with.

“What really worries me and a lot of my colleagues is that the system that we have at the moment is not fit for purpose. It is hard to imagine how we are going to be able to provide access to these therapies with the current model.

“We know that if we were more effective in utilising available and upcoming therapeutics, the cost of managing patients will probably be less. Patients would be able to get back to work. They would not be in hospital. We do not take any notice of those ancillary costs when it comes to reimbursement of therapies. Unless we have a complete paradigm shift and look at this in a more holistic fashion, we are going to really run into a lot of trouble,” he added.