Patient advocacy groups demand end to HTA reform delays as election nears

The Health Technology Assessment (HTA) Review Implementation Advisory Group (IAG), led by Professor Andrew Wilson, convenes today (10 April) for its first face-to-face meeting since the release of the final report by Federal Health Minister Mark Butler last September. Yet, more than 2.5 years after the HTA Review commenced and six months since its recommendations landed, Australians are still waiting for a government willing to act.

For patient advocates, it’s a damning indictment of a system paralysed by delay and bureaucratic theatre.

“Progress has been slower than anticipated, and we strongly encourage an acceleration of timelines to ensure patients are not waiting any longer than necessary for access to medicines,” Lisa Robins, CEO of Patients Australia told Health Industry Hub. “Ongoing and transparent engagement between the IAG and all relevant stakeholders is critical to success.”

Tamara Dawson, CEO of MSCAN, said “The promise of reform via the HTA Review was welcomed and supported by our patient community. However, by any objective measure, several years with no meaningful reform is too long.”

Australians with serious chronic and life-threatening conditions continue to be locked out of access to lifesaving and life-changing therapies, not because the innovative treatments don’t exist – but because the system is a procurement process fixated on the lowest price rather than one that values innovative health technologies.

Tanya Hall, CEO of hearts4heart, emphasised the the human cost of bureaucratic inertia. She said, “The delays in implementing HTA reforms have significant consequences for people living with heart disease and other chronic conditions. Patients continue to face long wait times for access to new therapies, technologies, and treatments. While we understand that reforms are complex, patients should not suffer as a result.”

Robins added, “Patients are waiting far too long to access new and innovative medicines. In many cases, this delay results in a significant decline in quality of life – and, tragically, in some cases deaths. We hear many patients are suffering without the right treatments or medicines.”

For those with complex or rare conditions, the barriers are also financially and emotionally devastating.

Leanne Raven, CEO of Crohn’s and Colitis Australia, told Health Industry Hub, “One of our members recently told us he is incurring unaffordable medicine costs because he needs double dosing of a PBS medicine to keep him in remission for the first time in the last 4 years.

“As a young person in his twenties, he is having to pay $1300 dollars for the extra dose per month. How can he afford to find $15,600 per annum to remain in remission and avoid flares leading to emergency department presentation and hospitalisations?”

This isn’t a one-off as Dawson explained, “Over the years we have heard too many personal stories of patients funding treatments and sacrificing financial security to access the treatment option that will afford them the best chance of a healthy life. It’s heartbreaking.”

In the case of stage III melanoma, clear evidence supports the earlier use of a particular medicine in the patient treatment journey, with proven efficacy in reducing the risk of disease progression. Yet, the system remains rigid and unresponsive, denying patients timely and equitable access to a therapy that dramatically changes outcomes and offers significant improvements to quality of life.

With a federal election just weeks away, advocates said the time for polite discussion is over.

“Reforms must reflect a real-world system that ensures equitable, efficient, and rapid access to innovations, not just for those in metro areas or with private care, but for all Australians, regardless of their postcode or socio-economic status,” emphasised Hall. “We hope that the next government prioritises transparent and timely implementation of the HTA Review recommendations, with patients at the centre of decision-making.”

Raven criticised the ongoing disconnect between clinical evidence and timely access, saying “The next government needs to prioritise implementation of the HTA recommendations that directly provide access to medicines matching the available evidence for clinically safe practice and improvement in quality of life.”

Children with inflammatory bowel disease (IBD) remain locked out of internationally available, evidence-based treatments, while flexible dosing – essential to optimising outcomes and achieving remission – is often financially out of reach for patients. Meanwhile, highly trained health professionals are drowning in prescribing paperwork, wasting valuable time that should be spent on patient care.

“Through the HTA review, we want to see a system that ensures timely access to novel medicines—closer to 60 days, not the current average of 466 days,” Robins stated. “Patients Australia expects both sides of government to deliver on their commitment to implement the $25 co-payment legislation. We also urge the government to go further by automating and reducing the PBS Safety Net- an essential next step in achieving meaningful PBS co-payment reform.”

Dawson delivered a final warning: half-measures won’t cut it. She said, “What we haven’t yet seen, and we expect from any government, is a commitment to deliver a system that ensures Australians can access the best treatment options in a timely and equitable manner. This includes for patients in rural and regional Australia – a big part of the skin cancer community.

“We want the government to focus on the health of all Australians and we would like to see investment that delivers us a HTA system with that same focus.”

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