Equity Spotlight: Rare Disease Clinical Trial Access for Aboriginal and Torres Strait Islander Populations

By Kendra Viloria

Acknowledgement of Country and Context

I acknowledge the Traditional Caretakers of the lands referenced and would like to pay my respects to the elders of the past, the present, and the emerging. I recognize their connection to the land, water, and sea which have harbored community and culture.

The systemic inequities and impacts of colonization being perpetuated onto Aboriginal and Torres Strait Islander peoples continue to effect the social, economic, and health outcomes of these communities today. Acknowledging the consequences of this reality, we seek to emphasize the importance of culturally appropriate and community led approaches when addressing health disparities in rare disease treatment. It is dire that any created solution should recognize and honor the systems, sovereignty, and knowledge of the Aboriginal and Torres Strait Islander people.

Introduction

There is an overall lack of data for rare diseases and a significant disparity for clinical testing. Individuals living with rare diseases often struggle finding access to treatments and diagnosis. Nevertheless, Aboriginal and Torres Strait Islanders being the two most distinct indigenous populations in Australia--face a disproportionate lack of general healthcare access as a result of financial, geographical, and cultural barriers. These constraints create more difficulty towards Aborignal and Torres Strait Islanders living with rare disases; amplifying the need for treatments. Access to rare disease clinical trials should be taken into consideration in order to provide greater accessibility to treatments.

Problem & Policy Context

Distrust in Research

Past research on Aboriginal and Torres Strait Islanders would be conducted on the basis of western ideal; often neglecting the values that Indigenous Australian communities stand for. The past effects of colonization within health research perpetuated exploitation and cultural disturbances within the Aboriginal and Torres Strait Islander communities--often being implemented in order to establish racial superiority.

Geographical Barriers

There are more Aboriginal and Torres Strait Islanders living in remote regions compared to their non-indigenous counterparts. Those living in remote regions are more likely to experience financial and accessibility challenges, as well as greater health disparities than those living in more urban areas.

Underrepresentation

There is a general lack of research for rare disease and a lack of indigenous genomic diversity within reference genomes. Creating greater difficulty for Aboriginal and Torres Strait Islander populations to recieve diagnosis and treatment.

The Importance of Community Engagement

Collaboration with Aboriginal and Torres Strait Islander communities must be emphasized when conducting health research and rare disease clinical trials. Research should be culturally informed and prioritize the values of Aboriginal and Torres Strait Islander communities--with cultural competence training being provided for researchers and healthcare workers. Researchers should consult with community leaders in order to align projects with the values of the community. Aboriginal and Torres Strait Islanders should also have a pivotal role in conducting clinical trials targeted towards the collective.

Remote Clinical Tirals

Giving individuals the option to participate in clinical trials through telehealth is crucial to improving healthcare access to Aboriginal and Torres Strait Islanders living in remote communities. Current telehealth services should continue to improve meeting the needs of Aboriginal and Torres Strait Islander communities