How Meta’s response to Canada’s Online News Act hurts patients

You can’t find it if you don’t know what you’re looking for.

That’s how I feel every time my Facebook and Instagram communities related to neuromyelitis optica spectrum disorder (NMOSD) discuss a news topic I hadn’t heard about. I’m left madly searching the internet to get caught up.

Meta, which owns Facebook and Instagram, recently made the decision to no longer share articles from the mainstream news media with those of us who reside in Canada. Meta’s change took effect at the beginning of this month, and it puts many rare disease patients at yet another disadvantage.

Bill C-18 and Meta’s reaction

With the news media industry rapidly changing, the Canadian government in June passed Bill C-18, also known as the Online News Act, to create a more equitable revenue-sharing model between those who create the news stories, like journalistic outlets, and those who share the stories with the public, like digital platforms — including Meta’s. The act will take effect within 180 days of when it was passed, on June 22.

In response, Meta has decided that any news link or content originally published by a journalistic enterprise will no longer be shared on its platforms. Thus, if an NMOSD patient shares such a link in a Meta group chat or post, it will show as “this content is not available.” Presumably, Meta doesn’t want to participate in this revenue-sharing pact and has thus changed its policy.

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We have a rare perspective on this act in our home because my husband works in mainstream media. We’ve watched many of his longtime colleagues in the industry get laid off because the advertising dollars aren’t there as they used to be. People don’t watch the news on TV around the dinner hour to the extent they once did. Instead, many news consumers get their content when they’re ready for it on social media platforms.

The Online News Act asks the major digital platforms to return to the creators a portion of the revenue they earn from the news content, which is responsible for keeping many users on their sites. While Meta argues that their platforms increase news consumership without charging journalists, I don’t feel that position is true. There’s a cost associated with producing content that Canadians can trust as authoritative, versus hearing about news via word of mouth from our friends.

For NMOSD patients on Meta, we’re left telling one another to look up a topic instead of directly sharing a link on Instagram or Facebook — a far more challenging prospect for those of us with visual impairments, who may find searching the internet to be time-consuming and exhausting.

How the inability to advertise affects patients

While journalistic outlets here compete for consumers, only one Canadian media outlet is publicly funded by an act of Parliament: the editorially independent Canadian Broadcasting Corp. (CBC). Even with this financial support (supplemented by advertising income), the CBC, in my view, doesn’t do the best job of getting the stories that matter in front of Canadians. In our fast-moving world, getting the right information to the right people is what should matter the most.

Further, Canada doesn’t allow pharmaceutical companies to advertise directly to patients. In the U.S., by contrast, pharmaceutical companies can create and publicly offer advertisements, even in commercial time during prime-time TV hours. The only way Canadians see these television commercials is if we’re watching a U.S. TV channel. There I’ve seen commercials for several treatments, such as Lyrica (pregabalin) and Enspryng (satralizumab-mwge).

If pharmaceutical companies can’t advertise their medications directly to patients here, how do we know the products exist? In Canada, all the power is then placed in the hands of the specialists who treat us. They must stay educated and continually upgrade treatment options as they develop. The situation is vastly different in the U.S., where patients might learn about a treatment from an advertisement, then get more information from their specialist if appropriate.

Options for NMOSD patients

I made some changes in the wake of Meta’s new policy here. First, I set my Google Alerts to respond to several keywords and phrases, including “neuromyelitis optica,” “NMO,” “NMOSD,” and “rare disease.” You can do this even if you don’t have a Gmail account, although it’s a lot easier if you do.

Setting a Google Alert is only a temporary fix, though. Google has also responded to the Online News Act and plans to remove links to news content from their Search, News, and Discover products in Canada by the deadline, too.

If you’re able to get Google Alerts for now, you should be notified about new content on this website, Neuromyelitis News. You can also subscribe to this site so that you never miss what’s being discussed about our disease and in our community.

Lastly, stay connected and involved with patient advocacy groups like The Sumaira Foundation and the Guthy-Jackson Charitable Foundation, which often fund research studies that produce the findings shared in news stories.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).