Long covid research continues to be hampered by a lack of data, and a government committee hearing was told last week this is an especially acute problem for the Aboriginal and Torres Strait Islander community.
The House Standing Committee on Health’s inquiry into long covid and repeated covid infections held the hearing last Friday following months of receiving submissions, including a significant volume from people with lived experience of long covid.
“We have no clear evidence on long covid cases amongst Aboriginal and Torres Strait Islander people,” Dr Jason Agostino, a GP, epidemiologist and medical advisor to the National Aboriginal Community Controlled Healthcare Organisation (NACCHO) told TMR prior to the meeting.
“Most jurisdictions have not shared data on presentations to their long covid clinics by indigenous status. Our primary care data systems cannot provide reliable or timely data, and no researchers have approached NACCHO to partner with them.
“NACCHO is most concerned about the impact of covid on the burden of chronic disease, but this too lacks appropriate data. There is concern both about the impact of covid illness and the impacts of access to health services through the pandemic.
“There is a perception that we are seeing an increase in the prevalence of chronic disease or significant deterioration in clinical status among people with these chronic diseases through the pandemic.
“The National Aboriginal and Torres Strait Health Protection subcommittee have requested data on excess mortality to assess these concerns, but there are no data available for Aboriginal and Torres Strait Islander people.
“We’re also concerned that instead of investing in Aboriginal community-controlled health organisations, the response to long covid in many jurisdictions appears to be investment in standalone disease-specific clinics that will likely be difficult to access for many Aboriginal and Torres Strait peoples.”
According to committee chair Dr Mike Freelander, NACCHO’s concerns reflect the overall barrier that currently hinders progress in long covid research.
“I think one of the things that really has hampered the inquiry is a lack of data,” Dr Freelander told TMR. “So I think we want to try and get as much information backed by evidence that we can about things like incidents, any evidence from here or overseas, or of treatment options that work. And any data about the prognosis for people diagnosed with long covid.
“A lot of the submissions [to the inquiry] and a lot of the information provided seems to be quite subjective and qualitative, rather than quantitative,” he added.
In its submission to the inquiry, NACCHO recommends:
- any policies and programs addressing long covid be implemented in accord with the National Agreement on Closing the Gap
- development of an investment strategy to support workforce challenges exacerbated by covid and long covid
- funding of research into the potential for covid to precipitate chronic conditions or exacerbate pre-existing medical conditions, with any research conducted among Aboriginal and Torres Strait Islander people to be led by Aboriginal and Torres Strait Islander researchers
- implementation of structural changes, such as those agreed to under Closing the Gap, to mediate the long-term incidence of long covid
- nationally consistent policy responses to long COVID are integrated into community-controlled, patient-centred primary health care
- publication by the ABS of “excess mortality” data for Aboriginal and Torres Strait Islander people.
In its submission, NACCHO said long covid symptoms had also not been identified as a high priority.
“Most ACCHOs have reported sporadic cases of long covid,” it said. “However, it is recognised that the same general barriers to accessing medical care for Aboriginal and Torres Strait Islander peoples are likely to be barriers to presentations for long covid.”
