CORD – members meeting 2023

Our Patient Advocate Katie Allen attended the CORD membership meeting on behalf of our organization.

After a quick fix on some name issues, we were off and running accepting the 2022 minutes. Then we moved on to the financial statements which are looking good. Finances are up from an increase in activity after COVID-19 but also an increase in members and an increase in fees and conference charges. Through this discussion, it was mentioned that all corporate and affiliate members are listed online and the number of members is nearly 250. Auditors have changed due to fee increases and the fact that there were major delays in receiving the auditors’ report. The former auditors merged into Grant Thorton and provided a junior auditor which led to some major issues.

The major project is still the Rare Disease Drug Strategy. The next conference is November 29/30, 2023 in Calgary. Feds announced in March their commitment to RDDS and provided some positive information, some negative information, and lots of no information. The major area money will be dispensed into bilateral agreements. The agreements were to accelerate access to diagnoses, collect patient data, and research increases. There is no investment in infrastructure necessarily. We have no information about the talks but we cannot see if any provinces and feds have reached any point of agreement. Transfers for funding can take years but the money is there. This movement on the government structure categories has been identified, but where this advisory group is going so far only CORD has been asked and no terms of reference exist. The new health minister is a decent pick for working with patient groups, but we just don’t know a whole lot about their plans for the RDDS. CADTH is now looking at a rare disease strategy to improve patient submission and real-world evidence. Rare Disease Centres proposal will likely link the pediatric clinics. Need to have patients embedded into the networks – think ERN.

Support diagnosis, access to therapy, and comprehensive care are the three key pillars. Looks like funding is not going to be used for this. In Calgary “One Child, Every Child” is looking towards this and has reached out to CORD. They have offered to set up the national network and have been given approval for this network and opened up CORD to propose members of the steering committee and groups. There was no discussion about how adults would be filtered in, however. Access to therapy Health Canada has been quite agile in providing drugs. It’s getting the reimbursement end. It does look like CADTH is evolving towards more positives but they need to improve the actual optimal uses of therapies. So, who will be our equivalent to the UK’s NICE? CORD is proposing to set up the framework and provide recommendations for optimal uses through consultation. How to capture patient data and patient entry form and validate and accept. The cost of delayed diagnosis has been able to be shown to be a burden to the system. The third pillar is patient partnership development so they can participate in the strategy. This is still ongoing and will be discussed at the November conference.

With thanks to Katie Allen (Patient Advocate Canada).