The inquiry heard testimony from people who had spent years trying to access treatment, and from researchers and clinicians frustrated by the lack of guidance.
The Senate inquiry into access to diagnosis and treatment of people with tick-borne diseases has resulted in seven recommendations, which have had a mixed response from the sector.
Dr Gary Deed, chair of the RACGP quality care expert committee, told TMR the recommendations had implications for quality patient care, especially for GPs.
“There are people presenting with similar illnesses. It’s complex for GPs to understand and manage these patients, and so some of the recommendations are just ramping up quality care services and guidelines to help GPs know what they can do.”
Dr Deed was referring specifically to the debilitating symptom complexes attributed to ticks (DSCATT) clinical pathway, which was roundly criticised by almost everyone who spoke at the hearings.
Two recommendations of the inquiry refer specifically to DSCATT.
Recommendation 3 is for DoHAC to “consult medical practitioners and patient stakeholder groups to develop a term to replace DSCATT that removes the stigma that is felt by patients, and provides clarity for medical practitioners”.
And recommendation 4 is for the department to “replace the DSCATT Clinical Pathway with Grading of Recommendations, Assessment, Development and Evaluations (GRADE) guidelines and patient information”.
“We heard patient stories and evidence that people have been demonised in the past, [about] complex management pathways. Resetting and change will actually help people get the care and service that they may need,” said Dr Deed.
“With illnesses with a label like that, people can get very caught up in set pathways that they think are ways to manage people, that aren’t necessarily evidence-based.”
The RACGP has called for an upgrade to the grades of evidence required for any suggested therapeutic pathways, said Dr Deed.
“At the end of the day, we should be patient-focused and looking at patient needs.
“Where the evidence is lacking or difficult, certainly symptomatic support and team-based care is useful.
“[We heard] that people felt rejected by the medical systems because they couldn’t find validation, not just for their illness, but for their symptoms, that they were worth being supported and having quality care around.
“I think these recommendations shift us into a much more supportive framework when we’re treating people with these emerging illnesses.”
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Dr Leona Gilbert, an adjunct professor in cellular molecular biology, who is the CEO of Tezted Ltd – a company that’s developing diagnostic tests – as well as Lyme Disease Association of Australia scientific advisory committee chair, was a witness at the inquiry.
She told TMR the very limited evidence base for DSCATT was one of the reasons many of the witnesses “tore it apart”.
Dr Gilbert’s testimony to the inquiry was mainly related to the issue of tests that are available to people overseas, but not in Australia.
Recommendation 7 is for the government to “urgently review diagnostic testing available internationally to determine the efficacy and suitability for use in Australia”.
Dr Gilbert told TMR the recommendation was “limiting, but encouraging”.
“It’s limiting in the fact that they’re only doing a review of the suitability and efficacy in Australia, but there aren’t a lot of studies published on different diagnostic kits being used on Australian patients.”
There are only two such papers, said Dr Gilbert, but even so, “these two papers do demonstrate, even though there’s that not many patients being covered in those two papers, that these patients are chronically ill from tick-borne diseases and multiple microbes.
“But if they do the review of what’s internationally available, and correlate that with the ISO standards and the laws and the agreements that the Australian government adheres to, like the Ilac agreements, then that would be great,” said Dr Gilbert.
“The Australian government just needs to adopt them, because they agree to them. Why aren’t we doing that?”
Similarly, recommendation 3, to replace the term to reduce stigma and increase clarity, should be guided by international classifications of disease, said Dr Gilbert.
“I think that’s what they should be doing, because ICD codes are recognised globally, so why aren’t we moving more that way?”
Sharon Whiteman, president of the Lyme Disease Association of Australia told TMR “the senators did an excellent job with their recommendations”.
“Given the tight timeline of the inquiry, if these recommendations were implemented immediately, they would save lives,” she said.
However, “one critical element missing compared to the 2016 Senate Report is a strong sense of urgency”, Ms Whiteman said.
“Without immediate intervention, medical gaslighting and restrictions on TBD-treating doctors will continue to flourish – further limiting access to care for patients. immediate and expansive education on TBD diagnosis and treatment for GPs is essential to prevent future generations of Australians from suffering or dying needlessly.”
Leading experts and patients were not given advisory roles, the recommendations were non-binding, and it was not clear who would hold DoHAC, the NHMRC, APHRA and the infectious disease sector accountable, she said.
The responsibility for implementation was on those agencies themselves, as a result, and they had “historically failed to act.”
Ms Whiteman said what was ultimately required was “a declaration that ticks are making Australians sick”.
Research was an immediate priority, said Ms Whiteman, and so was “the restoration of medical autonomy so doctors can choose evidence-based treatment pathways without fear of retribution”.
“This isn’t just wishful thinking – it’s a necessary step toward progress and fulfilling the human right to adequate healthcare to hundreds of thousands of current and future Australians.”
