Today (May 5th) is #WorldPHDay. What will you be doing to help raise awareness for Pulmonary Hypertension? PH is a rare disease, which means that in Canada we have less access to treatment options.
While donations towards a PH charity are always appreciated, I ask that in an effort to help Canadians living with PH that you take the time to share the following link for "Take Action PAH" along with using the tool on the website to e-mail your local Premier. "We need your support—now, more than ever—as we continue our fight for publicly funded access to Opsumit. We welcome support from anyone affected by PAH, including patients, caregivers, and supporters of our cause. It only takes a few minutes—click on the easy-to-use sharing tools at the bottom of this page and visit the Meet Your Provincial Representative tab to learn more about meeting with your local provincial representative." http://www.takeactionpah.ca/
The USA currently has access to about 14 different PH medications. In Canada, we currently have access to about 8.5 medications. Opsumit, a PH medication that approved for use in Canada nearly two years was rejected from government funding. Treatment for rare diseases are more expensive because less medications are being made and sold because there is a smaller population who benefits from these medications. Opsumit is about $128.33 per day, for a 10mg dose. Many people with PH are unable to work due to horrible side effects of their medications, along with the debilitating side effects of the disease. As such, many people do not have access to this medication without government funding. So while it has been approved for use in Canada, very few patients actually have access to it.
Newer medications are less invasive with less debilitating side effects, and also hold a lot of promise in terms of treatment. Some medications that have been available in the US for nearly a decade never hit the Canadian drug market because our market is smaller, and because of the limitations set in place. There was a new medication approved for PH this year called Uptravi, but sadly, it may face the same fate as Opsumit because "Ontario legislation dictates that drug and treatment funding decisions be based on the best clinical and economic evidence available." - See more at: http://treatraredisease.ca/the-issue/#sthash.cloqIwHI.dpuf
As many of you know, PH is a progressive, often fatal disease with no cure. Current treatments help slow down the progression of the disease, which is why it is so important that we have access to these medications as soon as they become available.
To read more about my interview with Dr. Mehta (the Chair of PHA Canada) where access to PH treatments in Canada are discussed, please visit the link here: http://phightorflight.blogspot.ca/search/label/Accessibility%20of%20PAH%20Therapies%20in%20Canada%20Series