An interesting question recently arose from our launch readiness work for a rare disease client. The question was “Do rare disease patients and caregivers really require more manufacturer support than cancer patients?” My immediate answer was “Yes”, which lead to some disbelieving faces. If you think about it, I understand the skepticism. For example:
Are rare disease patients sicker or do they fighter harder for their life than a cancer patient? – No.
Is it any harder for rare disease patients and caregivers to afford their care than cancer patients? – No, probably not.
Why then do I say that rare disease patients and caregivers require more manufacturer support? There were two main reasons supporting my belief.
- Awareness and Affiliation – Understanding of most types of cancers in high within the general population and most of us understand the impact cancer treatments have on patients (e.g., impact of chemo, side effects from targeted therapy, etc.) We are also likely to have a personal connection with cancer based on our family and social circles. Who doesn’t have a close friend or family member who has dealt with cancer first hand? We empathize because we can relate.
In contrast, most rare diseases are so rare that the general population has no knowledge of the condition and lacks a personal connection to engender empathy. In fact, most patients have never met another person who has the disease they are living with. Patients and family members have to educate everyone on the disease and impact of treatments, as no one in their social circle has a good idea what they are going through.
- Understanding and Support – Because people understand how devastating a cancer diagnosis can be, the patient’s social circle galvanizes to lend support and let the patient/family focus on battling the condition. Family may stop by to clean the house. Friends offer to take the kids for a night or a weekend. Church and neighborhood groups plan and deliver meals during times of intensive treatment. And overall the larger regional and national community often participates in walks, donation drives, etc. to demonstrate their support for people living with cancer
The opposite is true for rare disease patients. Because friends, neighbors, and church members don’t really know about or understand the specific challenges of a rare disease, support may only come from immediate family members. Bake sales and meal calendars are less likely to be set up. These families will rarely, if ever, see someone sporting a t-shirt or ribbon in support of their disease. And in many cases, they may feel as if they have hardly anyone to talk to about their disease save for the individuals that they have met through online communities and the HCP team that works to treat them. This can be a logistically and emotionally challenging existence for many people.
As a manufacturer offering programs to support cancer patients, you may, in fact, offer competing services that are already provided (and most times better executed) by family, friends, and local organizations.
But as a rare disease manufacturer, you may be the sum total of a patient or caregiver’s support community. Your participation isn’t a nice add-on to an existing infrastructure of support. It’s essential. To be part of the community, you must first understand the challenges faced by the patients and caregivers within your specific disease state. Once you understand the additional challenges they face, how can you not bring to bear the full gamut of resources at your disposal to help beyond just providing a medication and a reimbursement hotline?
Really, isn’t that just what good community members do?