“Hope floats”
Estimated reading time: 6 minutes
Is 2026 the year to ‘give hope a chance’?
If you are a fan of the actress Sandra Bullock, you will likely be familiar with the 1998 movie, Hope Floats. In this film, the central character, Birdee Pruitt (played by Sandra Bullock), faces personal setbacks, betrayal and humiliation that lead her to reset and rebuild her life. A sentiment repeated throughout the film can be perfectly captured by the, now iconic, line:
“Beginnings are scary, endings are usually sad, but it’s the middle that counts the most. You need to remember that when you find yourself at the beginning. Just give hope a chance to float up. And it will, too.”
The truth is that hope might be the greatest single superpower of humanity. The ability of humans to hold on to hope when all evidence around them suggests the cause is lost, is how wars are won, goals are achieved and lives are sustained. No Olympian ever lifted a gold medal without hope, no oppressor was ever defeated without the hope of nations and its people, and not one single letter to Father Christmas was ever written without hope.
Hope shows up in our lives every day. From the smallest detail, “I hope this meeting runs to time”, to the largest desire to manifest a positive outcome, “I hope my dad’s cancer stays in remission”. It’s why most of the world’s population will spend time each New Years making resolutions, which if we think about it, are really just affirmations of hope. A declaration of our hopes for the year ahead.
So why is it then that ‘hope’ seems to be somewhat of a dirty word in the context of rare disease?
On a great many occasions, and way more than I would like, I have heard industry, academic and healthcare professionals justify their siloed, almost covert research activities, as being in the “best interests of the patients”, to avoid giving “false hope”. The same rationale is routinely offered as justification for lack of effective, if any, communication with patient communities around research and development (R&D) targeting their disease area.
Is this a genuine concern or a shield to hide behind to avoid engaging the communities they aim to serve? “Compliance” of course, is the next line of defence from professionals seeking to keep information and thus hope away from patients and their families.
But, the ABPI CODE OF PRACTICE FOR THE PHARMACEUTICAL INDUSTRY 2024, is very clear on this. Clause 26 Relations with the public, including patients and journalists; sub clause 26.2 states:
“Information about prescription only medicines which is made available to the public either directly or indirectly must be factual and presented in a balanced way. It must not raise unfounded hopes of successful treatment or be misleading with respect to the safety of the product. Statements must not be made for the purpose of encouraging members of the public to ask their health professional to prescribe a specific prescription only medicine.” [ABPI code, direct exert]
There are some key phrases here that give context, and context is everything when interpreting the ABPI code; “presented in a balanced way”, “not raise unfounded hopes… or be misleading”.
Hope versus false hope
True hope is based on concepts of realistic probability, possible outcomes and conceivable plans. False hope, or as the code refers ‘unfounded hope”, is an altogether different beast. Unfounded hope is based on unrealistic expectation, fantasy or denial of lack of probability. This typically involves thinking that relies on fantasy and ‘magic’ or outcomes outside of any conceived probability.
Do you know any academic or industry project currently being funded in your organisation or the rare disease R&D ecosystem that is a work of utter fantasy or requires a sprinkle of fairy dust for any fair wind of success? No—of course not. Health related R&D is grounded in evidence-backed rational with varying degrees of calculable probability.
Now of course, that is not so say it will work, or it will work every time for everyone, or that it will work in my lifetime of my child’s lifetime. But it is hope—and hope is everything. And when your back is against the wall with a long journey stretching ahead of you, hope might just be the superpower you need to make that journey more bearable along the arduous path. And who are we to deliberately deprive these vulnerable communities of hope when indeed hope does exist. Your work, in your lab, is hope and it means more than you know, so why shutter this from the community?
Knowledge of advancements bring hope in many ways. Not just the obvious hope for a treatment or cure in your lifetime, but the power that comes from knowing someone cares enough about you to be working on potential solutions. And believe me, as a parent of a child with a rare disease, where both the scientific and medical community seem to go to great lengths to keep patients from knowledge about advancements, the crumbs of insight we are occasionally fed sure do mean the world to us!
But what of this conundrum about giving false hope? Yes, absolutely there is a real ethical consideration, and you cannot underplay the importance of taking this responsibility seriously. But you also, as responsible industry with governing body professionals, need to consider one question; are the perceived dangers of false/unfounded hope greater than the real and present danger of no hope? And is there space within compliance and good practice to present hope while avoiding the dangers of false hope?
In short, yes. We go back to the ABPI and those important phases of “balance’ and “not misleading”.
We can, and we must, in my opinion end this practice of covert activity and pull the dust covers off to reveal all that promising early-stage R&D—revealing hope in all its glory.
With thoughtful, accurate and balanced communication we can take communities on the journey with us—to share the highs and lows along the way. The successes and, at times, inevitable failures.
We don’t need to patronise families with assumptions that they will latch on to any glimmer of hope and turn it into a fantasy or a miracle cure. With robust and timely information, they/we can understand what advancements mean for us, and as importantly, what they don’t mean for us. With education and practice we can become pragmatic and discerning about how we consume such news, and the lens through which we view it.
We can take it—I promise. Instead, what we struggle to bare is a life void of hope.
Even hope that ultimately leads to failure, is better than no hope at all.
Remember what Birdee says, “Beginnings are scary, endings are usually sad, but it’s the middle that counts the most.” And the middle can be made considerably better with a properly titrated and delivered dose of daily hope.
Well, at least that’s my hope for 2026. What is yours?
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