Rare Cancers Australia and Patient Voice Initiative welcome Agreement integrating patients as key contributors to the HTA process

Pharma News: Rare Cancers Australia and Patient Voice Initiative welcome Medicine Australia’s announcement of a 5-year Strategic Agreement with the Federal Government focussed on elevating the patient voice and earlier patient involvement during the Health Technology Assessment (HTA) approval process for novel medicines and technologies.

In an interview with Health Industry Hub, Richard Vines, Director of Rare Cancers Australia and Ann Single, Committee Member at Patient Voice Initiative discussed how consumer expectations and preferences have evolved in relation to healthcare, the significance of the patient voice in developing a reimbursement system fit for purpose, and how the pharmaceutical industry can work strategically with patient organisations to drive efficient access to novel medicines.

According to Mr Vines, patient expectations have changed significantly over time. “You could perhaps describe it as the emancipation of patients in the sense that Australian citizens and taxpayers have been footing the bill for healthcare and to a very large extent they have been ignored in the process about what is important to them. They are not only the funder at its core, but they are also the ultimate end user. We see increasing awareness and activation of patients realising that they not only can have a voice, but that they should have a voice. The industry and government are also coming to the realisation that patient participation in the HTA process is helpful and not a hindrance. I think, that is a huge breakthrough and it is evolving.”

Ms Single explained “Consumers are better integrated and connected than ever before so they’re not waiting for information from their healthcare professionals. They are very active in their own care and research which treatments are being accessed overseas or in the pipeline. Part of the challenge in healthcare decision making is seeking to understand those patient values and choices.”

The Zimmerman Inquiry hearings showcased a number of patient organisations where they felt that the reimbursement process has been failing patients. The patient voice is therefore paramount in developing a reimbursement system that is fit for purpose.

Ms Single added “Despite the competing agendas for industry, government and patient organisations, what unites everyone is that those working in the healthcare sector get out of bed in the morning with the goal of obtaining better outcomes for patients.

“I noticed the earlier patient involvement in the Agreement and we heard that need voiced throughout the Inquiry. With the new HTA process we need clarity around which outcomes are really important to patients and include patient-based evidence at the start of the assessment process.”

Mr Vines said “The new Strategic Agreement acknowledges that the HTA review and the consumer input should be part of the same process. You cannot assess a medicine and its impact on patients without talking to patients and understanding their lived experiences.

“When the HTA process is updated, I not only wish to see an earlier involvement of patients within the assessment process for new medicines, but also a way of providing weighting to the patient input and lived experiences that is meaningful.”

The pharmaceutical industry needs to partner with patient organisations to incorporate their input early and drive efficient access to novel medicines to improve health outcomes.

“In the past 10 years, Rare Cancers Australia has always worked well with industry and I find the ethical standards by which they operate is higher than most of the other corporates that we deal with. The area where industry could improve is partnering with patient organisations early in clinical trial design and one to two years before the launch of new medicines so that we can engage and meaningfully contribute to the reimbursement discussions,” commented Mr Vines.

Ms Single added “I would like to see industry provide plain language summaries of information within the reimbursement applications for patient groups to be able to understand and contribute to. I understand there may be confidentiality challenges, however, we need to work through those issues. There is also an opportunity to learn from patients who were involved with industry at the R&D stage of their drug development. It is important to help us understand the why. Industry can increase the transparency in this area to assist.

“Overall, there is good momentum for patient involvement at the moment. Let’s keep going because I can see a lot of goodwill around the place in all sectors to make this happen.”

Biljana Naumovic, Managing Director of Janssen Australia & New Zealand, said “As we have seen throughout this global pandemic, having early access to new medicines is not only a social imperative, but an economic one. This is a once in a generation opportunity for the Health Minister to leave a lasting legacy and to lead the world in providing timely access to life saving treatments. Patients across the country will be watching closely.”