RPE65-mediated IRD is a disease that degrades vision in children. If untreated, it leads to permanent blindness. LUXTURNA is a transformational gene therapy that halts the disease and restores lost vision, giving affected children their sight back. However, healthcare professionals are largely unaware that by carrying out a genetic test to confirm RPE65 mutation, they can unlock access to LUXTURNA and its life-changing effects. Consequently, doctors believe there is nothing they can do to help these patients. Our objective was to show retinal specialists and ophthalmologists the value of a genetic test and, based on its result, eventual treatment with LUXTURNA.

We decided the best way to inspire our audience to act was to prove how powerful their actions could be. That’s why Finding Light is faithfully based on a real patient success story and her family’s experience. The film was carefully scripted following an interview with the parents of a young girl living with RPE65-mediated IRD who was treated with LUXTURNA. Their vivid and descriptive account of years fighting to save their daughter’s sight, resulted in an emotionally driven film recounting the journey from two perspectives: the parent’s spoken story, and their daughter’s visual story told through a captivating and evolving animation style inspired by her love of drawing. Every scene is based on the patient’s genuine experiences; from moving to look for light, learning braille, removing the blindfold, to seeing a rainbow at nine years old. Our idea to inspire doctors relied on staying respectful to the original interview.

Since LUXTURNA gained ex-US approval in 2018, approximately 100 patients with RPE65-mediated IRD have been treated. We knew genetic testing was the biggest barrier to patients accessing LUXTURNA, which is only effective in those with the RPE65 genetic mutation. Therefore, we established that raising awareness of the importance of genetic testing amongst retinal specialists and ophthalmologists was key to saving the sight of young patients. Further research led us to find that many specialists were actively dismissive of patients with IRD because they have only ever heard one version of how the patient story unfolds – low vision inevitably followed by complete blindness. To address this, our strategy was to create content driven by a real story to prove to specialists they have the power to unlock their patients’ futures by employing a simple genetic test.

After launching to the global Novartis ophthalmology franchise, the film was supplied to Novartis medical representatives in every major market for use during virtual calls and, where possible, during in-clinic visits. Despite our narrow target audience, we want to ensure as many specialists as possible learn the importance of genetic testing and its role in saving the sight of children with IRD. The film is also being featured on the LUXTURNA brand, HCP-access-only website and is being shown at a variety of digital ophthalmology congresses across Europe, including EURETINA 2021, and at a seminar at the Royal College of Ophthalmology in the UK. It is also available to view on ophthalmologist-targeted closed LinkedIn groups.

Following the initial launch in April 2021, Finding Light continues to be shared with ophthalmologists and retinal specialists around the world. Given the rarity of the condition and the narrowness of our target audience, if even just one child’s sight is saved as a result of this film, then we have succeeded. Congress feedback to date has included expressions of genuine emotional connection with the content, a clear understanding of the impact the treatment can have on patients and a desire to apply the insight and learning provided by the film.