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Genentech is honing in on an aspect of the patient community that is too often overlooked — the role of caregivers in managing rare diseases.
In a recently-released short film, Genentech tells the story of hemophilia A caregivers throughout the patient journey.
Notably, the spot was directed by Joel Kefali — who’s perhaps most well-known for directing Lorde’s “Royals” music video.
The three-minute film draws on 200 hours of interviews with some 50 parents of children with hemophilia.
It launched right before Mother’s Day to highlight the crucial role mothers play in managing the bleeding disorder, according to Michael Dunn, VP and head of rare disease at Genentech.
“We were aiming to reinforce our commitment to and collaboration with the caregiver community by showcasing the physical, mental and emotional burden that comes with caring for a child with hemophilia A,” Dunn noted. “[That includes the] treatment decisions that go into [caregiving].”
The film depicts a mother giving birth to a child who is diagnosed with hemophilia A, a genetic bleeding disorder that’s caused by a deficiency of blood clotting factor VIII.
It then goes on to show the mental stress, chaos and difficulties of managing the disease as the child grows up, while also featuring the loving moments between a caregiver and patient.
Towards the end, the child is shown making progress and engaging in normal activities like playing sports and going to school due to being on treatment. Genentech’s hemophilia A treatment, Hemlibra, is highlighted on the website that hosts the film.
Given that the film is inspired by caregivers, Genentech also noted that many of the children of the participating caregivers are currently on Hemlibra.
According to Dunn, Genentech chose to focus on caregivers rather than HCPs or patients since they are often a critical, yet overlooked part of the treatment process.
He said that when treating hemophilia A, the caregiver plays an extraordinary role in the early life choices for the patient.
“That’s not to say that caregivers are going to play the same role in every condition,” he said. “To me, it’s about the authenticity and engaging with the community where they’re at and focusing beyond the product to the entire decision-making ecosystem that surrounds the patient’s journey.”
Dunn said Genentech plans to showcase the film at national conferences that the hemophilia A community attends, such as the National Bleeding Disorders Foundation.
The drugmaker will also launch the video across social media platforms, including TikTok and Instagram.
A central part of the Hemlibra website is the resources it offers for caregivers who are seeking to be a part of a larger community.
“The intent is to shine a spotlight on caregivers, but also to ensure that there’s a community where they can come together, share their learnings and navigate this journey together,” Dunn said.