The slogan that we’re stronger together usually refers to individual patients/caregivers, but I’m starting to see more examples of how it’s also true at the level of patient advocacy groups working together, both within and without the boundaries of a specific medical condition.
A great example of multiple groups focused on the same medical condition is this year’s awareness campaign by the International XLH Alliance, which is focused on the need for better, more universal access to effective treatment. You can see the kickoff to the campaign here or see all the recent posts at their LinkedIn account here. As they point out, access to effective treatment for kids has improved dramatically since burosumab hit the market, but access for adults still depends on where the patient lives, with far too many countries (or, in Canada, provinces) still denying access to adults. The Alliance’s individual countries’ groups are all sharing the same message, applying their country-specific experiences to the topic (and translating the message into their own language). This is what an awareness campaign should look like, focused on a message that the audience can remember and act on (petitioning their government to expand access or supporting such a petition).
This campaign has restored my appreciation for disease-specific awareness days, although you’ll note that the ultimate message here is NOT limited to the XLH experience, but is a problem across many rare disorders (and even common disorders). I think that kind of messaging is far more effective than messages that are disease-specific.
I’m going to say something controversial next, but I don’t think it’s as crazy as it sounds. I think disease-specific awareness days, as they’re usually structured, with a focus on the specifics of the disease, are a waste of everyone’s time.
With some ten thousand rare diseases competing for attention, along with the hundreds of more common conditions, most disease-specific awareness-day activities have become nothing more than background noise. You might break through briefly, but it will be forgotten within moments, replaced by yet another group shouting about the specifics of their disease. Realistically speaking, the only people who care about the details of a specific medical condition are patients (and friends/family) and medical providers. If a campaign is focused on “this is what XLH is, and this is how it affects me,” no one outside that limited group will remember for more than five minutes what XLH stands for or how it affects patients and their families.
Which is not to say that stories about rare disorders have no place. They just need to be told in the right order. The ones that start with a focus on the disease specifics are telling the story backward. It’s just information being thrown out into a void, with no purpose, no message to be retained, and no response (action) expected from the listener.
The Alliance has it the right way around—they start with a universal issue (healthcare access is a problem for patients), and then give examples from within the disease community (access is dependent on geography and age). Implicit in that message is a call for the audience to support expanded access. It gives the audience a reason to be engaged, and without engagement, the story is immediately forgotten and nothing changes.
I’d love to see patient groups across rare the rare bone disorders work together in their awareness days. Many of our lived experiences across these disorders are very similar, and so is the path to a cure (gene/cell therapy), so when addressing the general public, we should be leveraging that commonality instead of trying to explain to people how XLH is different from OI or FOP or any of the other endocrine disorder that affects bones. If our messaging is universal, then the message on XLH Awareness day (“we need better access to existing, effective treatment”) could be repeated on the other bone disorder awareness days, with illustrative stories about specific challenges those patients experience. And the more often the audience hears the overall message, the more likely they’ll actually remember it!
Bottom line: awareness days as they’ve been structured in the past just don’t work. We need to refocus them, so that instead of focusing on the disease specifics, they’re about the solution. The personal stories are still important, to hook the audience emotionally, but only as evidence of the bigger message and the need for the solution. Focus on what a better future would look like, and then use the individual disorders to illustrate why change is needed. Which is what the XLH Alliance has done—they envisioned a world with universal access, and are demonstrating how far we are from that goal.
Advocacy without an ask (call to action) is just a waste of everyone’s time. At best, the audience will feel sympathy for the patient. Briefly. Before they move on to the next patient’s story or their own problems, and nothing changes. Instead, for an effective awareness campaign, give the audience an action to take, and a message that resonates with their own life, so even if they don’t take action right away, maybe the next time they hear that message, they will take an action.
The Alliance’s pursuit of universal access to effective treatment is an excellent call to action, one that has immediate potential benefits. Of course, I’m hoping that future campaigns will have an even bigger, more long-term call to action, namely support for a cure. I believe that, fundamentally, all of the rare bone disorders (which are mostly if not entirely genetic in nature), share just one cure, gene/cell therapy. Now, more than ever, we should be changing the focus of awareness activities from one specific bone disorder to the shared need for a cure for ALL bone disorders. Within the U.S., I’m seeing the beginning of some procedures that would enable gene/cell therapy clinical trials across various bone disorders, and that seems likely to save a great deal of time/money. For example, there’s a new program called THRIVE which encourages clinical trial protocols that address multiple rare disorders (I’ll share more on this in the new year), and I’m sure there are other excellent initiatives that would benefit all of the rare bone disorders (and possibly more common disorders as well). We just need to be prepared to raise the public’s awareness of the need for a cure (not just for one bone disorder, but for all of them), and then ask them to support the various pathways to that cure.
Today’s call to action from me—click on the links above to the Alliance’s LinkedIn account and the XLH Canada Instagram account, or find their accounts at other social media sites, and read their stories! Think about what you can do to help expand access to effective treatment, and be prepared to act when called upon!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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