The Hemophilia Council of California and the Rare Disease Access Coalition recently submitted a letter to the Office of Health Care Affordability (OHCA) regarding the proposed Quality and Equity Measurement Set, as detailed in the November OHCA Board meeting.
Unfortunately, the proposed Quality and Equity Measurement Set completely ignores rare disease patients, which make up one in every ten patients.
HCC and the Rare Disease Access Coalition are hopeful that OHCA will design and implement policies for persons living with a rare disease by including rare disease patient access to diagnostics and treatments, while promoting strategies to shorten the diagnostic journey in their proposed quality metrics. By failing to include rare disease patients in the proposed measurement set, OHCA is missing an opportunity to explore options to reduce spending growth in this patient population by shortening the diagnostic journey and reduce delays in accessing specialized treatments.
