A paper from the Innovation and Value Initiative (IVI) and Sick Cells, a national sickle cell advocacy organization, demonstrates how traditional approaches used to assess the “value” of novel medicines frequently worsens systemic racism and health inequity.
Medicare and insurance companies use health technology assessments (HTAs) to evaluate the worth of medical innovations, and HTAs are ultimately used to choose which new drugs patients will have access to, and how much they will cost. But because of biases in methodologies and evidence, centralized decision-making, and underrepresentation of Black, Indigenous, and People of Color (BIPOC) in patient advocacy on a systemic level, HTAs frequently contribute to inequities in health care, according to the paper.
The paper looks at a case study involving sickle cell disease, which, as Bio.News reported, disproportionately affects Black and Latinx groups and often exemplifies inequity in healthcare.
The Institute for Clinical and Economic Review (ICER), conducted an HTA of sickle cell treatments in 2019, and Sick Cells was involved in the process. The patient community’s voice was “consistently external to the HTA process,” with exclusion of the patient community’s recommendations, according to the paper. “Sick Cells initiated new strategies for engaging with ICER,” says the paper, but “taking these steps without also addressing disproportionality in decision authority ultimately led to little measurable impact on the HTA process.”
The paper suggests reducing inequity by engaging BIPOC voices, looking into evidence creation and support mechanisms for equity-centered HTA, and acknowledging the place of HTA within broader systems of racism.
