BC Pharmacare will now cover new drugs for British Columbians suffering from rare diseases.
As of Aug. 18, 2023, medications that treat amyotrophic lateral sclerosis (ALS), acute hepatic porphyria (AHP) and long-chain fatty acid oxidation disorders (LC-FAODs) will be covered by the publicly funded provincial program, according to a statement from the Ministry of Health.
“These changes ensure that coverage is aligned with clinical evidence and patient access to appropriate medications is improved for those living with these conditions,” said the release.
One of the medications now available is the oral formulation of edaravone or Radicava ORS. This works to delay the loss of physical function in ALS patients and will be added to the PharmaCare formulary as a limited coverage benefit.
The intravenous version of Radicava has been available 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,” said the release.
BC Pharmacare typically covers most drugs provided by health professionals in addition to contraceptives and certain pharmacy services. Expensive Drugs for Rare Diseases (EDRD) are provided on a “case-by-case, last-resort basis, with an approximate annual cost of more than $100,000 per patient,” according to the B.C. government’s website.
Other medications covered under the EDRD process are givosiran (Givlaari), covered as of June 22, 2023, and triheptanoin (Dojolvi) as of May 23, 2023, according to the Ministry of Health.
Givlaari is an injectable medication and is used to treat AHP. The metabolic disease causes painful attacks in several parts of patient’s bodies and if left untreated may cause 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,” said the government statement.
Dojolvi, which treats LC-FAODs, is expected to have as many as four patients eligible for coverage within the first year. The rare genetic diseases prevents the body from breaking down long-chain fatty acids into energy during metabolism.
