This week, The Honourable Bill Morneau, MP for Toronto Center and Canada’s Minister of Finance announced the Canadian Government has published their budget for 2019 and there are many aspects of the budget that could greatly impact patients, especially those with rare diseases.

Budget includes the Government’s intention to move forward on 3 foundational elements of national pharmacare that will create:

  • A Canadian Drug Agency
  • A national formulary
  • A national strategy for high-cost drugs for rare diseases

With regard to the strategy for orphan drugs (not sure which is worse – orphan drugs or high-cost drugs for rare diseases), the Budget plans to invest up to $1 billion over two years, starting in 2022–23.

That $1 billion for a high-cost rare disease drugs strategy is about 70% of the entire budget being allocated to Health Canada ($1.4 billion in total).

The Government plans to partner with provincial and territorial governments “to build a coordinated strategy for gathering and evaluating evidence on high-cost drugs for rare diseases, improve the consistency of decision-making and access across the country, negotiate prices with drug manufacturers, and ensure that effective treatments reach the patients who need them.”

It is likely that many in the rare disease community struggling to get access to drugs like Spinraza (for spinal muscular atrophy) or Orkambi (for cystic fibrosis) will be thrilled with the $1 billion commitment to provide better access to high-cost drugs.

However, that money does not begin flowing into 2022. That is 3 years, and 1 election, away.

Another interesting aspect of the budget is the Government’s commitment to help Canadians with disabilities.  According to the report, 6.2 million Canadians aged 15 or older have a disability that limits their daily activities.

The Government plans to invest an $290 million over the next 5 years to implement the Accessible Canada Act, introduced in June 2018, that will provide all Canadians “greater and more consistent accessibility across the country, through the proactive identification, removal and prevention of barriers to accessibility in sectors under federal jurisdiction.” The Budget also includes special references to supporting employment for people with intellectual disabilities and autism spectrum disorders. The Budget also includes a special provision for helping person with visual impairments.

One final budgetary item that could greatly impact patients and their families involves changes to the Registered Disability Savings Plan (RDSP).  The changes are:

  • Budget 2019 proposes to eliminate the requirement to close an RDSP when a beneficiary no longer qualifies for the Disability Tax Credit (DTC).  The estimated cost of this measure is $109 million over 5 years, beginning in 2019–20, and $33 million per year ongoing.
  • Budget 2019 proposes to exempt RDSPs from seizure in bankruptcy, with the exception of contributions made in the 12 months before the filing.

To see the complete Budget 2019, click here.

To view more news stories, click here.