BC PharmaCare now covers new drugs for rare diseases

PEOPLE in B.C. will benefit from BC PharmaCare’s new coverage of medications used to treat rare diseases, including amyotrophic lateral sclerosis (ALS), acute hepatic porphyria (AHP) and long-chain fatty acid oxidation disorders (LC-FAODs).

Effective August 18, 2023, the oral formulation of edaravone (Radicava ORS), which works to slow the loss of physical functions in ALS patients, will be added to the PharmaCare formulary as a limited-coverage benefit. The intravenous (IV) formulation of Radicava has been covered by BC PharmaCare as a limited-coverage benefit since August 2020. In the first year of implementation, it is expected as many as 100 patients in B.C. will be eligible for either the oral or IV formulation of Radicava.

In addition, two new medications are now covered by BC PharmaCare under the Expensive Drugs for Rare Diseases (EDRD) process. They are givosiran (Givlaari), covered as of June 22, 2023, and triheptanoin (Dojolvi), covered as of May 23, 2023.

Givlaari is an injectable medication to treat AHP, which is a metabolic disease that causes people to experience painful attacks in several parts of their body including the abdomen, chest, back, arms or legs. If untreated, it can lead to chronic kidney disease and liver damage. Givlaari is the first drug treatment available in Canada for AHP and is expected to benefit as many as 10 patients in the first year of implementation.

Dojolvi is taken orally and helps patients living with LC-FAODs, which are rare genetic disorders that prevent the body from breaking down long-chain fatty acids into energy during metabolism. As many as four patients may be eligible for coverage in the first year of implementation.

These changes ensure that coverage is aligned with clinical evidence and patient access to appropriate medications is improved for those living with these conditions.


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