Every week or two there is a news story about another drug, usually an expensive drug, being denied to a person who is part of a provincial drug plan. The news article often cites a Provincial Health Minister’s office as stating that the drug is under review, or they are waiting to sign a contract with the drug company, or there is insufficient evidence to pay for the drug at this time. Meanwhile, the patient is denied the treatment and the medical condition continues to ravage their body.

The same cannot be said for patients with pulmonary arterial hypertension (PAH).   Those patients are getting their medicine and that is largely due to the advocacy efforts of 2 groups – the Pulmonary Hypertension Association of Canada (PHA Canada) and Scleroderma Canada.  Recently, those 2 groups announced their success in getting the drug Uptravi (selexipag) available in 9 of the 10 provinces for patients with PAH that have public drug coverage (Prince Edward Island is the 1 hold out). And that is the 8th drug that patients with PAH now have available to them.

PAH is a rare lung disease defined by high blood pressure in the lungs that can lead to heart failure. There is no cure for PAH and the average survival once diagnosed is 5 to 7 years. Several treatment options are now available in Canada but like many rare conditions, symptoms and severity of the disease varies widely in this population and the more treatment options available, the better.

As stated earlier, Uptavi is the 8th drug that provincial health ministries have approved for treating PAH. Uptavi is an IP receptor agonist while the other drugs available include endothelin receptor antagonists, phosphodiesterase inhibitors, soluble guanylate cyclase stimulators, and prostacycins.

So how did PHA Canada and Scleroderma Canada get an 8th, fairly expensive drug covered by the provinces? The answer is an organized, nationwide effort that allowed the patients to easily and effectively be part of the campaign.

Recently we talked to Jamie Myrah, Executive Director of PHA Canada about the campaign they put together to successfully get so many expensive drugs for a rare condition available in public drug programs.

The program – Take Action PAH – had 3 aspects that made it success. The email, in person, and social media campaigns were all geared towards making it easy for patients to contact their provincial representatives (or health ministers) with consistent messaging.

The campaign even has its own website – www.takeactionpah.ca

Myrah said, “We were able to provide practical tools for our community members to get involved. The website was the hub of that and it provided 3 primary ways for people to be part of the campaign.”

Email Campaign

The email campaign provided people with a very easy way to contact their provincial representative and provide them with suggested text that could be customized. The campaign was even able to provide each person with the name and contact information of their premier, provincial Health Minister, and local representative.  Myrah stated, “The messaging is already there and they have an opportunity to add their own information based on their own perspective. It’s an action that people could take from their own computer in a matter of seconds.” And the word ‘action’ is relevant here. The campaign was designed to help people be active in getting a drug into their provincial drug plan. “It was a great way of applying the pressure and raising awareness within the governments,” noted Myrah.

In Person Advocacy

For those who wanted to get more involved, the campaign also had an advocacy package that provided information on how to physically meet their provincial  representative. The package gave patients information about how to set up a meeting and key talking points. Among the items in the package was a letter. “We were encouraging people to ask their local MPP or MLA to send a letter to the Health Minister about the issue,” noted Myrah.

Social Media

The third part of the campaign was the social media toolkit they had on the website to help patients with recommended text for Facebook and Twitter, along with tags and handles that were appropriate for each province. “It was easy for people to go there and share the messages across social media platforms,” stated Myrah.

The campaign, while successful, is not finished. There are still more drugs approved by Health Canada for PAH that are not in the public plans and there are still many health issues that need to be addressed for PAH patients. But, the campaign they have in place is a good template for the PAH community and one that other patient populations may want to invest in.

For more information of PAH, visit takeactionpah.ca

For more advocacy stories, visit zealaccess.ca/stories