The Federal Election is Over – Now What?
As we re-emerge from the most recent election, this is a great time to continue strengthening your relationship with your member of parliament (MP). We must do our best to put aside our personal political affiliations and think of the future of our CF community as we look to engage our newly elected representatives.
Regardless of whether your riding’s seat was won by the incumbent or if you have a new MP, send their office an email or shoot them a call.
If you voted for them, let them know you supported their race and share with them the things that are most important to you. If you didn’t vote for them, reach out and let them know that you look forward to building engagement on what is most important to you as a constituent and share with them your expectation to have your priorities addressed by them as elected officials. (You can find some MP talking points on federal items we are still tracking at the bottom of this page)
We will continue to Get Loud as a community! If we have learned anything in these past 2 years of advocacy, is that our voices carry much further and louder if we have the support of our elected representatives.
Let’s not forget that Trikafta is just the tip of the spear. It is a very important battle that we have won; it is finally being accessed in Canada. A small number of CF families with private insurance have already begun benefiting from this miracle and a big portion of our Canadian CF population eagerly anticipates provincial public listing announcements within days, if not weeks.
But it is not the end of our fight. We still have restrictive criteria on who can access Trikafta (<90% FEV1) and there are provinces that are not going to move as fast to public fund it as others. Additionally, we must stand up for the 10% of our Canadian CF population that are still waiting for a modulator to address their mutations. The future is bright for our community, and we know that the next therapy is already in the works.
We need to make sure we are not fighting this battle all over again when that time comes.
Let’s maintain momentum. Reach out to your MP and congratulate them on their win. Let them know what you expect of them, and most importantly, build on that relationship. You never know when you’d be calling them with a direct ask and it’s most important that we always nurture the relationship, not just when we need them in our corner.
Still on our Watch
National Strategy for Drugs for Rare Diseases
We still remain the only G7 country without a rare disease strategy. The most recent public consultation on the strategy concluded this spring. Given that we still have a Liberal government, we must hold them accountable to their promises:
“To help Canadians with rare diseases access the drugs they need, Budget 2019 proposed to invest up to $1 billion over two years, starting in 2022-23, with up to $500 million per year ongoing. As reaffirmed in the 2020 Fall Economic Statement and Speech from the Throne, this includes working with willing provinces, territories and stakeholders to establish a national strategy for drugs for rare diseases.”
The rare disease community cannot wait any longer. There is money put away already, let’s push on them to begin the work. We do not want the National Strategy for Drugs with Rare Diseases to take a backseat to a conversation about National Pharmacare. There is currently no process to alleviate the bureaucracy and delayed access rare disease families are dealing with. While not perfect, the provincial public drug plans are not broken. Access to rare disease drugs is.
National Pharmacare
First you put out the fire, then you work on renovations. We need a National Strategy for Drugs with Rare Diseases ahead of a National Pharmacare. The Liberal government did not make National Pharmacare a big part of their platform, and it is uncertain how much they are going to drive that conversation given that they only won a minority. We need to make sure any policy changes they try to make are supportive of our community.
PMPRB Guidelines Changes
One of the main policy changes the Liberals have been trying to make are the PMPRB guidelines changes. Thanks to the rare disease community’s advocacy on this file, and the hard work we have all put into it, the PMPRB guidelines changes continue to get delayed by 6 months, every 6 months. We need to hold the line and make sure that these changes are halted for good.