Arpan Shah, PharmD, MBA, Marketing Director, Lexicon Pharmaceuticals, Inc.

Cancer can be incredibly complicated. A whirlwind of information is thrown at patients that they don’t understand. Meanwhile, it can be difficult for family members and friends to truly understand what patients are going through unless they have shared a personal connection. But, Arpan Shah is not one of those people. He understands.

When Arpan was in pharmacy school, his mother was diagnosed with breast cancer. Thankfully, because of her support network, she felt comfortable asking questions and getting the answers she needed. But, Arpan would come to understand many people don’t have the information or support that his mother had. So, he sought to make a difference, change lives, and help people with cancer understand what’s going on.

“I don’t think I realized until much later in my career why I was so passionate about oncology,” Arpan says. “But that story of my mom has always been in the back of my head. So, that’s what sparked my interest to get into pharmaceuticals and how I landed and eventually stayed in oncology.”

Making a Connection

As the lead for the promotion of Xermelo (telotristat ethyl), the first and only treatment for diarrhea associated with carcinoid syndrome (CS), Arpan started by making a connection with CS patients to learn more about how their lives can be improved. Over time, he began to understand how their debilitating diarrhea affected daily activities and how important it is for patients to have support. But, finding the necessary support is a challenge since many people are reluctant to leave their home because of a lack of symptom control.

To learn even more, and to include the healthcare professional’s perspective as well, Arpan pioneered the development of the Carcinoid Impact Survey. This was the largest survey of its kind in CS, capturing responses from more than 600 patients with CS and 150 healthcare providers.

One of several keys the survey revealed: Patients and providers had a disconnect. The majority of oncologists believe patients experience symptoms up to one week each month, whereas the majority of patients report experiencing symptoms at least three weeks each month.

Activating the Patient Voice

Arpan concluded a traditional pharma approach would not work to educate patients and providers about Xermelo. Instead, the solution was to amplify and activate the patient voice. He developed a program that addressed the whole patient by meeting the patient’s clinical, behavioral, and psychosocial needs. The result: The About Carcinoid Community.

The About Carcinoid Community was created to support patients and address their unmet needs. It’s a place where patients can understand the true impact that carcinoid symptoms have on daily life, engage patients in disease education, and reconsider the possibilities of symptom management.

The About Carcinoid Community forum features behavior-based tools that help patients address daily challenges. Patients learn how to ask for support from their friends and family and have better conversations with their provider using evidence-based communication strategies. Patients also build skills to set appropriate goals, reflect on what matters most, plan ahead, break negative thought cycles, and gain control of their symptoms.

The whole patient focus became an effective one-two punch. Patients received support through the About Carcinoid Community forum while the clinical oncology community received training on how to have more effective conversations with their patients and identify patient challenges. These communication strategies helped providers elicit more accurate feedback from their patients and uncover how much the CS symptoms affected them. This enabled the healthcare providers to determine a better and more accurate care plan.

The feedback of patients with CS has been incredible. Occasionally, Arpan even receives a personalized letter from a patient who is taking Xermelo that describes how the materials have changed the patient’s life.

AboutCarcinoid.com offers information about carcinoid syndrome (CS) including what causes CS, symptoms, and potential treatments, as well as several interactive education tools and resources.

“That’s what motivates us to continue doing what we’re doing,” Arpan says. “There are patients out there who need our help, and we can’t rest until we’ve been able to make a difference for all patients. We want to be able to tell them that more is possible.”

And thanks to Arpan, patients can expect more of these types of programs from Lexicon. As one of the original employees, Arpan is shaping the company’s culture and making sure patients are always put first.

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