Launching Rare Disease Drug During COVID Is Challenging but Possible

Launching on orphan drug in and of itself can be a challenge. But bringing one to market during a pandemic poses a whole additional set of challenges. In 2020, pharma companies accustomed to in-person meetings suddenly found themselves faced with lockdowns not only in the U.S. but around the world. Some firms chose to delay bringing their drugs to market, while others needed to move quickly to modify their launch strategies. Swedish Orphan Biovitrum AB’s (Sobi), with the help of Real Chemistry (previously known as W2O Group), fell in the latter group. The companies recently discussed how a holistic engagement model can help make experiences better for people with rare diseases who have a new treatment option during COVID.

Bringing a drug to market is a “monumental exercise, as we all know, outside of COVID, with having lots of different levers to choose from. But within COVID, having such restrictions on how we could communicate and really bringing a drug to launch for the first time in a hybrid environment is incredibly impressive,” said Jo Ann Saitta, chief digital officer at Real Chemistry, a global health innovation company, during a recent webinar. Hosted by PharmaVOICE, the webinar was the second meeting in a series of the company’s think tanks.

In order to make sure the customer experience was delivered, “we had to kind of reevaluate and rethink some of the things we were doing as we were launching in COVID,” explained Joshua Prabhakar, vice president and head of franchise for Sobi North America. “If I were to underscore a couple things, I think the first is the way the customer engages fundamentally shifted. And so when we’re thinking about personal engagement not being your primary lever that you were going to pull, the kind of materials and messages that you can put out had to fundamentally shift. So we actually updated our creative [strategy] completely to be much more focused on a nonpersonal or omnichannel-type focus…erring on the side of digital and moving toward digital.”

And in order for the company’s messages to have an impact, they needed “to be crisp, clear, succinct, knowing that they were not going to be delivered by an individual,” he said. Sobi focused upon customer engagement and what kind of content would be relevant and impactful. “We had to fundamentally just shift how people were going to [interact] with the content.”

In addition, said Prabhakar, “it’s about challenging ourselves to think about how do we interface or engage and make sure all the channels are working together — nonpersonal and personal together.” He noted that within four months, the company went from having no nonpersonal strategies to having a “fully integrated digital arm standing up.”

Asked how Real Chemistry reacted to the challenge, Saitta said that “’agile’ is the first word that comes to mind. It’s really being able to pivot and shift and be agile in responding to a primarily great digital communication.…This content-first, this design-first thinking is really at the center of omnichannel experiences,” as well as “understanding the customer that we are talking to with that content. Out of the content- and design-first thinking come the messaging,” which is then tailored to the channel.

The speakers did not disclose the drug they were speaking about, but there are some possibilities. The companies worked together on Gamifant (emapalumab-lzsg), which launched in 2019. It’s indicated for the treatment of pediatric and adult patients with primary hemophagocytic lymphohistiocytosis with refractory recurrent or progressive disease or intolerance to conventional HLH therapy, a rare immunodeficiency disease.

In December 2020, the FDA approved Kineret (anakinra) — a drug initially approved in 2001 for rheumatoid arthritis — for the treatment of deficiency of IL-1 receptor antagonist (DIRA), an ultra-rare autoinflammatory disease. Sobi acquired the rights to develop and commercialize the drug from Amgen Inc. in 2013.

Doptelet (avatrombopag) was first approved in May 2018 for the treatment of chronic liver disease in people with thrombocytopenia who are undergoing a medical procedure and then in June 2019 for the treatment of chronic immune thrombocytopenia, a rare autoimmune bleeding disorder. Dova Pharmaceuticals initially brought the drug to market, but the therapy became a Sobi product when that company acquired Dova in November 2019.

Companies Can Turn Challenges Into Opportunities

Taren Grom, co-founder and editor at PharmaVOICE and moderator of the webcast, stated that “we’re talking about a rare disease drug that already has its challenges to begin with” and asked how those challenges could be turned into marketing opportunities.

According to Prabhakar, “We took it as an opportunity on not only rare disease but just disease in general, fundamentally reevaluating what the advantages are as we go through COVID and what the advantages are of having a more omnichannel presence.…The challenge in personal promotion with rare disease is it’s always trying to find a patient — deploying the resources appropriately to be able to talk to the right customers to find that patient. Knowing that you had more cost-efficient channels to have as outbound, both on the consumer side and on the physician side, it gave us a lot of latitude in keeping our target lists relatively large so we could actually have a broader funnel at the top. In rare disease, I think it actually posed a good opportunity for us to have a broad net to cast to kind of make sure we’re actually capturing patients.”

Prior to this approach, he explained, “you’d probably take the traditional channels of personal promotion first — and we still had that, so I don’t want to downplay that — but I think it gave us the opportunity to keep a larger net because your costs are different. We were talking to 3,000 physician customers vs. 6,000 [on its target list during the pandemic launch]. Those are very different numbers from a cost standpoint.” From a patient standpoint, “I think it was even more exciting. So now you’re talking about people who are searching. Physicians may or may not be interested in the particular disease that we were in, but patients certainly were. Speaking to patients more impactfully and effectively gave us the option to drive them into physician offices to have more impactful conversations, empowering conversations where they could actually go out and proactively ask for what they wanted. Not that we wouldn’t have done this before, but I think it accelerated a lot of the consumer work that we would have done because we knew we needed to do a few things differently.”

Real Chemistry focused on understanding patients and “using data in a way to build those audiences in a way that was specific to rare disease patients,” said Saitta. “And by doing that,…understanding where that patient population could be, tying it back to physicians in that locale and being able to further accelerate the conversation between the patient and the” health care provider (HCP) was important. “I think the beauty of some of the data that is now available to us allows us to — in a de-identified way, of course — identify and help patients find doctors who can treat them and have HCPs further accelerate their treatment decisions. For example, the use of de-identified medical claims data and AI technologies can really allow us to target any potential sufferers; then knowing where those sufferers exist geographically, we then can align communication to that target list, to those physicians in that geography to be on the lookout, to be sensitive to patients who might be coming through the door with certain symptoms that open them up to the opportunity of being diagnosed more quickly in that rare disease space.”

What Can Pharma Learn From Other Industries?

In the pharmaceutical industry, the omnichannel experience is a little different than it is in other industries, noted Grom, who asked what lessons pharma could learn from them.

“Our expectations in health care have been raised by our most beloved brands, whether it’s Disney or Peloton or Netflix, and I think for us, the learning has been the curation and the customization of content, the necessity of that to be relevant and then to be delivered, of course, in a timely and expeditious fashion,” replied Saitta. “But that is a push-pull. It’s not just a push, but it’s allowing that community member, whether it’s a patient or a physician, to be part of a bigger brand community and to be able to engage and get information on that brand. We have a challenge ahead of us in health care. The experiences by those brands really challenge us as marketers to be delivering communications that are hybrid — that are live and digital — that really foster a community around the brand, and we can do that in health care. And then lastly, ensure that those communications are relevant and customized for the customer.”

“I think we were always aspiring to” an omnichannel approach, said Prabhakar. “I think what our recent experience, going through this, did is it catalyzed it.…I think it made us recognize that we had to do it. This wasn’t a nice to do — this was a need to do.” Five or 10 years ago, selling the idea of digital promotions might have been a challenge, he maintained. But with COVID, “I think this gave us a very clean and clear look at the importance of doing it, and not doing it wasn’t an option. It just moves the needle very quickly. I think there are certain instances where there was a need and a recognition that personal promotion was better, and we needed to kind of keep doing that, but then it also uncovered a lot of areas that had been somewhat buried for us to actually start executing on a nonpersonal digital level.”

Within the pharma industry, “I think we all aspire for the larger consumer brand and the experience of that. I think we have to take a much more measured approach of what’s possible now and then what’s possible in the mid-term and long-term,” he continued. “To me, the industry that we should at least be trying to surpass is the finance industry. They do a great job at how they interact with their customers, and they’re a highly regulated industry, similar to pharma. For me and the challenge to my team has always been that at least we should be able to provide a similar experience to a bank. I hope we can do better than that. But if we can do [at least] that, I think that’s already moving the needle in pharma.”

Asked about measuring results and return on investment in omnichannel marketing, Prabhakar responded that “personal promotion has always been where we start, but I also know from an ROI standpoint, that’s probably the least impactful just because your cost going in is so high.” Sobi has “really kind of taken some significant strides to appropriately evaluate attributions across these channels. Now, we haven’t put that out there on this particular brand yet, but we’re pretty far along on getting there. It’s not only about how your individual channels are performing but how they collectively perform. Then you’re getting a much clearer picture of your ROI, not just looking at your sales channel and your ROI’s not good there.”

Utilizing data and analytics is “really at the heart of allowing businesses to make better decisions and allowing them to react more quickly,” asserted Saitta. From a health tech maturity perspective, the industry is able to collect data from multiple channels in real time or close to real time, “to be able to visualize it and to be able to serve that up to decision makers in marketing, in sales and allow them to adjust as quickly as possible.” This information can help companies determine quickly whether they’re spending money in the most effective ways. With this as a foundation, she said, the industry will evolve beyond ROI. “I call it beyond return on investment to return on patient experience and patient outcomes. So when we’re doing our job right, ultimately we’re affecting the outcomes of patients. We look to a day where we can continue to include that in our measurement. That return on experience is about how do we make things frictionless for patients to receive care? How do we make things frictionless for HCPs to deliver care?”

Acknowledging “omnichannel” as one of many industry buzzwords, Prabhakar said he thinks of this as “creating a cohesive experience for people so that they get the information they need in a way that’s relevant to them. We’ve taken a very monolithic approach in the past in pharma, and I think all we’re talking about now is taking a much more cohesive look at all the different touchpoints that they could have as an individual and a person and making sure that the content is relevant in all the interactions that they would have.”

“The possibilities within health care really are at our fingertips now,” added Saitta. “Omnichannel is about how we deliver that consistent, relevant and hybrid experience to our customers. For us, it’s about thinking that content first and design first, and you can think about content and design when you really understand the customer and what they need to experience in order to have a positive outcome. And if we start with that as the thinking, then really our processes, our content, our channel, our messages become much more streamlined.…I also believe if we can operate that way, we also enhance the way operations runs, and we can enhance our asset approval process.”

According to Prabhakar, “how we’re communicating content is critically important, but also knowing where people are. If a physician is opening something up in their office, they’re probably not looking for in-depth content — they’re probably just looking at dosing. So how do we serve that content there?…Recognizing time and place of [a situation] and how we’re delivering that is critically important.”

Also of importance is confidentiality, he stated. “For us as pharma, it’s always been critically important to do things the right way for our customers and for patients. We know the restrictions that exist in Europe, and I think as we get into the U.S.,…we’ve got a lot of information, and being responsible with it as an industry I think is going to be critically important.” Looking ahead and trying to determine what industry regulations may be in place is key.

Grom pointed out that patients, physicians and payers are all pharma customers and wondered whether they are three different segments or “at some point…all one customer.” Saitta contended that they are different types of customers. “I think there is certainly mega- or macro-messaging overall that we want to deliver, and maybe that’s from a more company corporate perspective, but it all ties together — or it needs to anyway.…I do see the value in understanding those audiences differently, understanding their needs differently and…serving up the information they need at the moment they’re making decisions.”

In addition, she continued, “our keen understanding of underserved populations, diversity, equity, inclusion — that has to be top of mind for all of us as we continue to move toward omnichannel, to move toward, really living, hopefully, in the digital world. And it’s something I take away, and I purposely make sure that I’m thinking about it when I have conversations like this with our clients. In the spirit of making sure we’re not being remiss.…I see these audiences as different, but I see them getting pulled together from a clinical, corporate and commercial perspective. And last but not least, let us all be thinking about the different populations that we need to serve and the kinds of messaging that they need as well.”

Prabhakar agreed that “it’s three different [customer segments] and maybe even more depending on which category you’re in. Sometimes advocacy is a very different policy.…I think there are distinct customer groups. Now the same individual may be crossing some of those things at different points in their life, but I do think we’ve got to think about them as distinct groups, and how we bring them all together to kind of help serve the patient is the right way to do it. I think what’s relevant is very different across customer groups in my opinion.”

Angela Maas

Angela has an extensive background of editing, reporting and writing for trade and consumer publications. She has written Radar on Specialty Pharmacy (formerly called Specialty Pharmacy News) since she joined AIS Health in 2005 and has broad knowledge of the various issues at play within the space. Before joining AIS Health, she was managing editor at Employee Benefit News and Employee Benefit News Canada and managing editor at HemAware (a hemophilia publication), Lupus Living and Momentum (a multiple sclerosis publication). She has a B.A. in English and an M.A. in British literature from Arizona State University.

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