November is National Caregivers Month. It’s also a good time to think about what you are offering this under recognized, underserved, but highly important audience for orphan drug companies.
Given that more than half of people with rare diseases are children—and that adults may be severely impacted by their rare disease—there’s a good chance that treatment decisions are being made by a parent, spouse, sibling, or even an adult son or daughter.
These caregivers face a whole host of medical, social, and economic challenges. Along with the patient’s ongoing needs, they have their own work and personal lives, as well as attend the needs of other family members. If it’s a genetic disorder, they may be caring for other family members—or are concerned about having them tested.
In rare communities, it is often caregivers who are on the front lines of treatment development too. They work hard for patient advocacy groups, search for specialists, juggle doctor appointments, coordinate drug delivery, battle with insurance companies, connect in forums, and sort through clinical trial options.
It’s truly all-consuming. So it’s surprising how few companies pay serious attention to caregivers’ needs. In the past, there have been some praiseworthy attempts to honor the contribution they make, such as Shire’s BRAVE awards.
But meeting caregivers’ needs is a more complex challenge. It requires a willingness to listen and design community-specific support programs and resources for this audience that flies under the radar of pharmaceutical companies far too often.
Co-Creating a Community
Lundbeck’s Moving Together for HD is an example of support for caregivers done right. This Facebook page, designed to meet the needs of Huntington’s disease families as well as patients, has earned Lundbeck 11,960 likes, high marks for engagement, and an enduring place in the community. All of this has been accomplished by demonstrating that the company truly understands and is walking beside these families throughout their journey.
The page provides a platform to launch inspiring awareness campaigns, promote Lundbeck’s community events, and highlight the work of their community advocates. There are separate tabs for community photos, an informative HD infographic, and a form to sign up for the mailing list.
One of the most popular features is the assortment of videos housed on a tab. Because caregivers face so many responsibilities that may prevent them from attending the HDSA convention each year, Lundbeck is addressing this unmet need by having advocates act as roving reporters, interviewing speakers and covering events. The videos they capture are archived on the Facebook page, serving as a permanent resource.
Helping Caregivers Help Their Teens
With Huntington’s disease, the role of the caregiver becomes more important as time goes on. At the other end of the spectrum are chronic genetic disorders that impact children from birth. Here the caregiver plays the lead role in the early years, but this role gradually relinquishes by educating the child on how to manage their health at each step and ideally turning over the reins of care in late adolescence.
The transition can be challenging, especially in metabolic disorders which require patients to adhere not only to treatment but also to a strict diet. In these patients, the normal rebelliousness of teen years can result in life-threatening emergencies.
Sobi identified treatment adherence in adolescence as one of the areas that needed further support in the hereditary tyrosinemia type 1 (HT-1) community that they serve. They sponsored research that looks at the beliefs, attitudes, and behavior of adolescent patients living with HT-1. Sobi then shared the findings with caregivers in a webinar that was designed to help parents teach teens. They are also involved in the collaborative development of tools to address problems identified in the research.
Recognizing the Caregiver Journey
Like patients, caregivers have their own unique journey, specific to each rare disease community. There are many ways that pharmaceutical companies can make this journey simpler—by offering co-pay assistance, refill reminders, peer mentoring, and treatment tips, to name just a few. Listening to their needs and collaborating with the community to co-create support services and resources will maximize acquisition of patients and ensure success with treatment.