Using social to tap into the rare disease market
Every winter when Rare Disease Day rolls around on the last day of February, some pharma companies try to make it count. For Incyte, it’s all about raising awareness of myeloproliferative neoplasms — a rare group of blood cancers — and the biotech is getting a little help from a television soap opera.
"This year, as part of our ongoing MPN educational efforts, we teamed up with ABC’s General Hospital to develop a four-episode storyline about polycythemia vera (PV), which is [a type of MPN]. The story line aired in February leading up to Rare Disease Day," said Incyte spokesperson Catalina Loveman.
"Additionally, we partnered with actress Finola Hughes, whose character on General Hospital was diagnosed with PV, to raise awareness and inspire patients and caregivers impacted by these under-recognized blood cancers," she said.
Currently, Incyte has one product — Jakafi (ruxolitinib), a JAK1/2 inhibitor — which is approved to treat two rare blood cancers. Events like Rare Disease Day allow Incyte to tap into the patient populations that are using Jakafi and spread the word without directly promoting the product.
For Rare Disease Day 2017, held Feb. 28, Incyte encouraged MPN patients, physicians and caregivers to share their stories, show support and help raise awareness via its unbranded patient website, Voices of MPN, and its Facebook page. That same day Incyte held a Facebook live chat during which a medical expert fielded questions about MPNs. The Delaware-based pharma also kicked off its fifth annual MPN Heroes Recognition Program, asking for nominations by mid-September.
"Our efforts drove significant engagement online, markedly increasing traffic" to the Voices of MPN website, which contains information and resources, Loveman said.
This year Incyte joined Shire, Achillion, Horizon Pharma and Lundbeck as event partners for Rare Disease Day in the U.S., which was first observed in 2009.
The National Organization for Rare Disorders (NORD) is the day’s official U.S. sponsor and this year the European Organization for Rare Diseases (EURODIS) and other rare disease advocacy groups participated, with events in 90-plus countries including, for the first time, Botswana, Nigeria, Senegal and Sudan.
Going beyond expectations
Irish biopharma Horizon launched its RAREis campaign on Feb. 28 to coincide with Rare Disease Day, aiming "to elevate the voices, faces and experiences of people living with rare diseases, as well as Horizon's programs and resources for the rare disease community."
Horizon’s campaign is anchored by an Instagram page, but the company is urging people in the rare disease community to connect using social media platforms of any sort — Instagram, Facebook and Twitter — with the hashtag #RAREis. Horizon says its Instagram page offers information on family support programs, scholarships and disease education initiatives.
Timothy Walbert, Horizon’s chairman, president and CEO, said the RAREis initiative "will elevate the tremendous stories of resilience over adversity that we've heard from our interactions with patients, their families and the more than 30 rare disease organizations that we interact with at hundreds of events around the world."
Like Incyte, Horizon's efforts are meant to position the company as a leader in rare disease treatments.
Raise your hand campaign
Companies of all sizes are getting in on the rare disease action. Danish drugmaker Lundbeck has several rare disease therapies in its portfolio in addition to its CNS-focused pipeline.
The company has found a way to continue supporting rare disease studies by using its Raise Your Hand for Rare Diseases campaign to help fund NORD’s research grant program, said Sally Benjamin Young, a spokesperson for Lundbeck US, which is based in Deerfield, Ill. The pharma launched its web-based initiative in partnership with NORD in 2010 and continues to run the campaign each year during the month of February.
"Our support of Rare Disease Day is to help give a lift to efforts that help the one in 10 Americans living with a rare disease and to provide seed funding, directed at NORD’s discretion, to rare disease research projects that are in the early stages," Young said.
While rare diseases affect only a small number of patients, there are an estimated 7,000 rare diseases that, when taken together, impact between 25 million and 30 million people.
"Lundbeck’s work in the rare disease community has given us a deep understanding of those who confront the challenges of these diseases every day, often without the resources and support afforded to more common diseases," she said. "On Rare Disease Day we are reminded that rare diseases have a significant impact on not only the individual patients, but their families and society as a whole."
When an individual clicks on the Raise Your Hand icon posted on Lundbeck’s website and NORD’s Rare Disease Day website, Lundbeck makes an unrestricted $1 donation to NORD’s research grant fund, up to $10,000. Since the campaign’s inception, more than 70,000 clicks have been generated in support of rare disease research.
NORD’s research grant program decides which projects to fund. Lundbeck said its donation to NORD’s research fund in 2016 supported grants related to alveolar capillary dysplasia, malonic aciduria, and Stiff-Person Syndrome.
"Our belief always is, we would rather participate and contribute with our own effort, not just [contribute] money," Young said. "You can give a handout or give a handshake … and work to elevate the cause."