Rare diseases drug plan announced for New Brunswick

The provincial government has established the New Brunswick Drugs for Rare Diseases Plan to help patients who face high prescription costs.

Health minister says plan will cover high costs of prescriptions for 5 rare diseases

Some New Brunswickers with rare diseases will now have help with the high associated drug costs.

The provincial government announced the New Brunswick Drugs for Rare Diseases Plan on Monday.

It will cover the cost of five drugs for specific diseases at no cost to the patients:

  • Aldurazyme for the treatment of Hurler and Hurler-Scheie forms of Mucopolysaccharidosis I.
  • Elaprase for the treatment of Hunter’s Syndrome.
  • Ilaris for the treatment of Cryopyrin-Associated Periodic Syndrome.
  • Myozyme for the treatment of Pompe disease.
  • Zavesca for the treatment of Niemann Pick Type C.

“The cost of drugs to treat rare diseases can sometimes reach a million dollars per year per patient, and often, due to the rarity of the conditions, demonstrating a drug’s efficacy through clinical trials is difficult,” Health Minister Ted Flemming said in a statement.

“These factors make it unlikely that these drugs would be covered under most drug plans. I am pleased that our government was able to bring forward this plan which will help alleviate the financial burden of those with these rare diseases.”

The plan is expected to cost the government between $1 million and $4 million annually, depending on usage, government officials said.

Annette Sebey, of Perth-Andover, has been lobbying the government for such a plan for years.

Sebey, 46, suffers from Pompe disease, a rare enzyme deficiency that causes glycogen to build up and damage the heart and other muscles until a patient can no longer breathe and dies.

The mother of two, who was diagnosed in 2004, is believed to be the only person in New Brunswick with the disease and one of only about 40 across Canada. 

Myozyme, an enzyme replacement therapy, is not a cure, but can delay and even prevent progression of the disease, Sebey has said.

Although other provinces, such as Alberta and Ontario, have covered the estimated $500,000 annual cost, New Brunswick had previously refused to cover the treatment.

As a result, Sebey has been participating in a clinical trial in Florida, travelling back and forth bi-monthly for infusions.

Patients must apply for the plan, beginning on Aug. 1. Requirements will vary for each drug, officials said. Applications are available by calling 1-800-332-3692.

New Brunswick will be partnering with Ontario to deliver the plan, using its Drugs for Rare Diseases Framework.

The framework was established to assess drugs using the best available evidence and recommend drugs for funding based on clinical criteria, officials said.

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