HOW DO YOU EMPOWER PARENTS WHOSE INFANTS ARE BORN WITH A DEATH SENTENCE?
You activate them to help shape their child’s care by connecting them to critical information that guides their next steps.
Pharmaceutical company Retrophin, Cholbam account
Consumer/patient disease for Zellweger spectrum disorders (ZSDs)
Thanks to the recent FDA approval of Cholbam, there’s finally a way to treat liver injury in ZSDs– a problem that’s nearly universal in this rare and deadly disease but can be overlooked by doctors. With so many organs affected all over the body and debilitating symptoms dominating doctors’ attentions (i.e. vision loss, neurocognitive issues), how can we get doctors to keep the silent threat of liver injury top of mind?
We need to come from all angles. Along with an HCP campaign, we launched an educational disease campaign to empower the parents as advocates for consistent monitoring of their child’s liver to their doctors. Through market research we found a common desire: to give their child the best life possible, under the circumstances, and to create the most happy memories in the time they have. Protecting their child’s liver is one more way parents can help their child and improve their prognosis. I honed in on these insights as I worked with designers on the campaign concepts shown below.
- Shift the ZSD management paradigm– start by activating parents to ask doctors about monitoring their child’s liver.
- Balance hopeful messaging about what a life with ZSD can be with the reality that this rare disease has turned one of life’s most precious moments–becoming a parent–into a devastating tragedy.
- Convey an empowering yet sensitive tone without over-promising.
- Set the stage for treatment with Cholbam without talking about it directly.
Note: concepts are in sketch and unpublished.
THE CONCEPT: Firsts
Parents of children with a ZSD have come to terms with the fact they are raising a child who is living in deadly decline. Their focus is to do all they can to give their child the best life possible. And some of life’s greatest moments are our firsts — the first laugh, the first word, the first step. Indeed, these parents will face many firsts — both challenging ones and heartwarming ones. Monitoring the liver is one of the first important steps parents can take to manage their child’s condition, and to help increase the chances of having more of the kind of firsts they would look forward to and look back on fondly.
THE CONCEPT: Problems
In ZSDs, parents have a long list of problems to worry about: neruocognitive, vision, hearing, kidneys— the list goes on. The liver is one more problem they might not know about because it is not visible, but it could be one less unknown with consistent monitoring. Managing as many of their child’s symptoms as possible can help parents worry less about issues they may be missing and focus more on those precious, intimate moments with their child. Don’t leave the liver as a question mark; ask your doctor about checking the liver.
THE CONCEPT: Unconditional
When your child has a ZSD, keeping up with the disease isn’t good enough; you must be one step ahead of it. The disease never stops, so you never stop, and the fight never stops. You are unconditionally committed to doing all you can for your child, no matter what. Monitoring the liver is another important way you can stay on top of—and ahead of—your child’s disease.
THE CONCEPT: Spectrum
Zellweger spectrum disorders have a wide spectrum of symptoms; some can be louder than others, but it doesn’t mean the quieter ones can be ignored without potentially severe consequences. Liver injury is nearly universal in Zellweger spectrum disorders, but it is a less noticeable threat that may be paled out by the many more visible complications, and therefore overlooked.
THE CONCEPT: Days
Parents of children with ZSDs just want to do all they can to give their child the best life possible and have more wonderful memories to create, preserve, and look back on. The best way to do that is to manage all the organs affected by ZSDs, and that includes the liver.