3 Tips To Advance Biosimilar Education For IBD Patients

By Anna Rose Welch, Editorial & Community Director, Advancing RNA

Over the past few weeks, I’ve published articles on how biosimilar manufacturers can work with many critical stakeholders, whether they be employers, oncologists, or patient advocates. The most recent of these stakeholder education-centric articles have been based on several incredibly valuable conversations I had at the CBI Biosimilars Summit with Laura Wingate, SVP of education, support, and advocacy for the Crohn’s and Colitis Foundation (Foundation). In addition to understanding the needs of patients in the inflammatory bowel disease (IBD) community, the Foundation is also unique in that it works closely with physician community. This has given Wingate a good sense of the current challenges in treating IBD as a whole, as well as the issues physicians and patients alike face in accessing biologics and biosimilars.

In the first of this two-part article, Wingate highlighted the biosimilar knowledge gap that exists between IBD KOLs and community physicians. She also elaborated on the collaborative efforts manufacturers and patient advocates can implement to understand and improve overall biologics prescribing habits. 

Now, in this article, I continue to showcase the main takeaways from our discussion, this time focusing specifically on the patient community’s needs. Whether it be pointing out specific unmet needs in IBD or suggesting meaningful educational materials for patients, Wingate delivered great examples of how manufacturers can support patient advocates and provide them with the information they need most today.

Patients Can Drive Change For Biosimilars — But How? 

A phrase that garners buzz, regardless of the industry, is “driving change.” And when it comes to the role patients could play in driving uptake of biosimilars, Wingate was optimistic they could be a significant force. She’s worked with The Foundation for 12 years, and as you can imagine, over the course of that time period there have been certain evolutions in how patients and doctors interact. For example, she described how diet became a critical pillar in the management of IBD. In the beginning, the gastroenterology physician community did not believe it was important to focus educational efforts on diet or nutrition. The evidence simply didn’t exist to support the role of the diet in patients’ disease journey. But as patients continued to emphasize the impact eating certain foods had on their digestion, advocacy groups began to use the U.S. Department of Agriculture food charts to educate on basic dietary needs. As this education continued to gain steam, physicians jumped on board, encouraging more research into malnutrition rates in IBD as well as the impact of certain diets (e.g., the Mediterranean diet). As patients drove these initiatives, Wingate said the perception about diet and its impact on IBD has rapidly gained more traction over the last five to six years.

Wingate believes patients will be a force for change with biosimilars as well once patients begin to realize savings by making this treatment choice. “If we can hit a place where patients see cost savings, I think patients will be the drivers of change for biosimilars,” she offered. “But before that, we have to continue educating around safety and work with biologic naïve patients. As more naïve patients start with biosimilars and have good experiences, eventually there will be a tipping point at which the patient community will see them as a choice right alongside the innovators. But that’s going to take time.”

Don’t Overlook The Pediatric Patient Population

This doesn’t mean patients have to — or can — do the driving all on their own. Wingate also pointed to an IBD patient population that could use more attention from manufacturers, and in turn, could increase the drive towards biosimilars. As Wingate pointed out, currently, there are no biosimilars available for the pediatric IBD population, in some cases due to ongoing patent protection for the originator. That’s not to say that pediatric biosimilar use hasn’t garnered increasing interest from a real-world evidence (RWE) standpoint. Just last year, we saw a study published investigating the role of biosimilars in pediatric IBD patients. The pediatric population overall remains a critical area of need, Wingate asserted, and she urged biosimilar makers to keep this population in mind as they develop their market strategies.

“It’s a smaller patient population, but it’s important and underserved,” she explained. “It will, however, require some heavy educational lifting, especially of parents. Young adults may prove to be easier to educate, especially if they were diagnosed and familiarized with the health system at an early age. But we haven’t fully explored educating parents and other pediatric care givers to date, and that’s going to be an area that needs attention in the future.”

Educating Patients: Resources And RWE Efforts To Consider

To best educate the patient population, Wingate had a few simple tips for manufacturers. For one, it probably goes without saying that materials should be kept short and snappy — for certain types of media educational efforts, she suggests limiting the timing to three minutes or less. Similarly, while infographics are valuable and increasingly common methods of education, she urged manufacturers to work with someone who is skilled at crafting infographics. (As someone famous no doubt said, a few words and images together does not always an infographic make.)

But overall, I liked her emphasis on making the materials relatable. “Include a patient story, if you can,” said Wingate. “In every focus group we’ve done, we’ve heard that patients want to hear from other patients. They want a real-world story, and we’ve found these stories are best represented in graphically and visually entertaining mediums. For instance, those white boards and short animations are very popular today.”

Another topic that came up throughout our conversation was RWE. As Wingate clarified, even though IBD organizations initially were concerned about biosimilar extrapolation, as more evidence came out, they began to adapt their policies. Expanding the community’s knowledge certainly takes time but approaching RWE collaboratively can increase transparency around the data being released. As she emphasized in a previous Q&A, manufacturers should not hesitate to provide their advocacy partners with data from their own RWE studies. The organization can then take that data and translate it into patient-friendly language.

“Advocacy groups are often short-staffed, so any resources that can come to us are immensely helpful,” Wingate admitted. “Feel free to schedule sit-down conversations and share what you’re doing with RWE. Talk to advocacy groups about registries and other opportunities, as well as what you may be doing in terms of your comparative effectiveness trials or if you’d like patient-reported outcomes.” As she emphasized, the relationship between manufacturers and patient organizations is mutually beneficial in advancing the research and mission of both groups. As long as the appropriate transparency and content controls are maintained, patient advocacy groups often have access to patient registries and patient-reported outcomes data that can be helpful in ensuring RWE and new treatments are advanced.

Overall, Wingate encouraged biosimilar makers to meet with their patient advocacy partners at least once a year. The end goal of these conversations is to find alignment where both groups can work together for the benefit of the disease community. Even though there may be differences in opinion and perspectives on certain hot-button issues may not always align, a candid relationship is an important building block for any successful collaborative efforts among stakeholders. In fact, when I asked if she had any magical, unicorn solution or piece of advice for manufacturers, Wingate pointed out that the different stakeholders often are left tackling problems in silos. And, as we all know, arriving at a sustainable, long-term biosimilar industry is going to involve each stakeholder being acknowledged and receiving some benefit from the introduction of biosimilars in the healthcare system.

“We all play a part — including the patient community — in solving these issues of access and cost,” she said. “My ‘unicorn’ piece of advice is, simply, let's collaborate and find solutions together.”