The Patient Advocates

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Taren Grom, Editor

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The Patient Advocates Jamie Ring Taking Advocacy to New Levels Passionate. Solution-Oriented. Witnessing the courageous actions of a high school classmate’s family in the face of leukemia clearly defined for Jamie Ring what she wanted to do with her life. The classmate was diagnosed with a rare form of leukemia and needed a bone marrow transplant. Instead of retreating into privacy to cope with the diagnosis, the family wasted no time in creating awareness in the community of their need for bone marrow donors and broke records with their bone marrow donor drives. “I realized then that grassroots efforts can literally change a community and have such power,” Ms. Ring says. “This experience made me want to spend my life doing something to help ease the burden for others. My classmate Angela never found a match, and she succumbed to her illness, but her family’s courage and strength are what started me on this advocacy journey.” Ms. Ring has since dedicated her career to building alliances between industry and patient advocacy organizations. Before her employment at Genzyme, she worked at Biogen Idec supporting patient programs for both the multiple sclerosis and non-Hodgkin’s lymphoma disease communities. It was there that she first began to realize her dream. “My experience at Biogen Idec as a case manager for people living with multiple sclerosis really taught me that it was possible to be a part of this industry by using my interest in social and human services,” she says. Additionally, she worked at the ALS Therapy Development Institute as the associate director of programs, responsible for ALS disease awareness initiatives and fundraising campaigns. In the orphan drug niche, patient advocacy groups play an essential role. Her focus on putting patients truly at the center and her commitment to building these alliances are laudable. Her next major career highlight was in 2009, when former Genzyme CEO Henri Termeer presented her with the Alpine Award, which is given to one employee annually to acknowledge his or her leadership for qualities of personal courage, commitment, teamwork, and aspiration. “It was a tremendous honor to know that my colleagues and Genzyme’s leadership team thought of me in that context and I still feel grateful today for that recognition,” Ms. Ring says. Ms. Ring has been instrumental in initiating various firsts. For example, she led the creation of the first rare disease advocacy website, Genzyme Rare Community, which shares best practices and creates forums for the exchange of information. This site is the first of its kind sponsored by a biotechnology company. As a member of the senior management team, Ms. Ring has been an important voice at Genzyme in the transition to Sanofi ownership. Even during times when budgets were cut and there were many business pressures, she made sure the patient perspective was front and center. According to Ms. Ring’s colleagues, this is a testament to her leadership skills. Ms. Ring gains this respect by creatively and thoughtfully conveying her ideas and Genzyme’s patient-centered culture in a way that inspires people. Partners outside of the company, for example the National Tay-Sachs & Allied Diseases association, say she leads by example by having the highest ethical standards in a field where there can be many gray areas. She strives to clearly communicate to other patient advocacy leaders in both the corporate and nonprofit sectors that high ethical standards cannot be compromised while standing up for patients. People look to Ms. Ring and Genzyme to set the high standards and best practices for the expanding field of advocacy and how to build the best industry and advocacy organization relationships. In the interest of sharing best practices, Ms. Ring will even tackle tough topics to discuss, such as both the achievements and the missteps of handling a crisis to an audience that included competitors and novices. Ms. Ring says her team calls her solution-oriented because she is an outside-the-box thinker consistently trying to find ways to navigate a challenge or make something happen when others think it can’t. “I do believe that everyone has something to contribute, that we all have a spark inside of us that just needs to be lit, and once it ignites, the potential is limitless,” Ms. Ring says. “I try to help people around me find that for themselves.” Jamie Ring has dedicated her career to building alliances between industry and patient advocacy organizations. Title: VP, Patient Advocacy and Humanitarian Programs, Rare Diseases Company: Genzyme, a Sanofi Company Education: BA, Union College, Schenectady; MPH, Boston University School of Public Health Family: Husband, Sean, and a large and ­supportive extended family Hobbies: Snowshoeing, hiking, spending time with nieces and nephews The Bucket List: African safari, skydiving Awards/Honors: Genzyme Alpine Award Associations: Healthcare Businesswomen’s ­Association, Mass Bio Social Media: Abbe Steel Patient-Driven Original. Energetic. By sharing her excitement for what she does to help people lead healthier and happier lives, Abbe Steel instills passion and purpose among her colleagues. An intelligent, innovative, inspiring, and high-energy individual, when Ms. Steel encounters a challenge or opportunity, she doesn’t sit back and talk about it; she takes action to make a solution happen. She has a gift when it comes to putting together the right technologies and partners to create new processes that solve problems and create efficiencies. Throughout her 22-year career in the pharmaceutical industry, Ms. Steel has always been focused on and passionate about patient initiatives. She single-handedly formulated UBC’s patient and physician services team from a gap she saw within the company to recruit and support patients participating in clinical trials. Over the last eight years, she has significantly grown this division to stand alongside the industry’s best-in-class specialty recruitment and medical communications firms. But unlike the stand-alone firms, UBC’s patient and physician services team is able to seamlessly consult and collaborate with the other groups and scientists within UBC to ensure that the study not only has a solid recruitment and retention plan, but is also designed and staffed appropriately. She encourages her teammates, clients, and the industry to think about patients differently, and looks for ways to bring programs and studies to patients’ homes, incorporate telemedicine and portable devices, and develop apps and other tools to build robust patient communities. One example of a patient-centric initiative in which Ms. Steel has played a leading role is the Web-based diabetes self-management program called SMART (Self Management Action Plan through Research and Technology). Working with Boehringer Ingelheim, Healthrageous (a digital health management provider), and other partners, Ms. Steel is helping to create a patient-centric lifestyle modification program that uses online digital tools to help participants better manage their type 2 diabetes. She believes the turning point in empowering patients was DTC advertising, which while controversial, allowed patients to be seen as part of the healthcare decision making process for the first time. Fast forward to today, and the focus is all on patient engagement and re-defining continuity of care. Ms. Steel has made a name for herself within UBC and its top clients as the go-to person when it comes to projects that can’t be done, because of her outside-the-box thinking and get-it-done mentality. This earned her UBC’s esteemed Circle of Excellence award in 2007 and a member of UBC’s management team. She truly loves her job, its challenges and opportunities, and the fact that she works alongside smart, creative people. Although her group primarily focuses on patient recruitment and retention initiatives, she has welcomed the challenges clients have brought to the table involving commercial programs and market access initiatives. This has proven to be incredibly useful, as it has given her a wealth of new ideas that she has incorporated into new products and services, as well some truly innovative project work with many pharma leaders. But the greatest challenge continues to be convincing clients to take risks; to try innovative, unproven approaches to clinical and commercial program design; and to pilot programs before there are documented metrics and that leverage the latest wireless devices, social media, new data sources, new care models, and new drug distribution models. Ms. Steel continues to expand the team’s capabilities and reach by establishing strategic partnerships, building new products and leading challenging and innovative programs. Although this dates back to the late 1990s, one of her career highlight was the naming and launch of the National Osteoporosis Risk Assessment (NORA), the largest osteoporosis study, which enrolled more than 200,000 women. Ms. Steel participates in UBC’s mentoring program and serves as an advisor to numerous people within the organization. She clearly defines expectations and sets the bar high. An enthusiastic and effective communicator, she helps people see themselves in a larger context, and challenges them to do their best. Marathon running is her passion outside of work, and she runs for a number of causes, including the Dana Farber Cancer Institute. Ms. Steel also oversees the Ben Burdetsky Youth in Action Fund with her family, a fund that provides college scholarships to students in need. Abbe Steel is motivated by new opportunities, new discoveries, and helping people lead healthier, happier lives. Title: VP, Patient and Physician Services Company: UBC, an Express Scripts company Education: BA, Communications, George Washington University Family: Husband, Tom; children, Dustin, Bri, Ethan, and Emma; dog, Harper Hobbies: Running, drinking champagne, watching ­baseball, traveling Bucket List: Throwing out the first pitch at an MLB ­baseball game; writing a screenplay; having lunch with Hillary Clinton Awards/Honors: UBC’s Circle of Excellence award; ­National Transplant Assistance Fund’s Exceptional Service Award Associations: Healthcare Businesswomen’s Association; Drug Information Association; Social Media Compliance Council (SMCC) working group Tweet at: @AbbeSteel Social Media: Fatima Scipione Patient-Dedicated Inquisitive. Loyal. Fatima Scipione’s overall empathetic approach to marketing has earned her credibility both among her peers and the nurse/patient ­communities she strives to represent. Joining the pharmaceutical industry without a science background can be a challenge. But Fatima Scipione was far from deterred. Endowed with an inquisitive nature, she committed endless hours to researching, reading, and asking as many questions as she could to master the business. And master it she did. As associate director, patient and nurse marketing, at Millennium: The Takeda Oncology Company, Ms. Scipione is ensuring patients and caregivers have the information and resources they need to navigate their multiple myeloma journey. “I am not satisfied with sitting still and taking a passive role in life — I always want to know why, how come, how does that work,” she says. “I believe being inquisitive has helped me be much more effective as a marketer.” Ms. Scipione is also fiercely loyal, believing that loyalty and trust are two of life’s core values. “This means you are willing to make the investment or personal sacrifice to strengthen a relationship, be it personal or professional,” she says. Her investment in and loyalty to the multiple myeloma community is legendary. She cares deeply about patients and their caregivers, and those she touches with her warmth and concern consider her to be a friend. Her dedication to patients comes across every day. Whether she is interacting with members of her patient speakers’ bureau or developing patient education resources; she never stops thinking of how to support, educate, and empower patients. This dedication has earned Ms. Scipione the widespread respect from her professional colleagues, who look to her as a trusted partner and successful marketer. In addition to her work with patients, Ms. Scipione is responsible for nurse initiatives focusing on education about multiple myeloma and Velcade, Millennium’s breakthrough treatment for patients with multiple myeloma, a cancer that starts in the plasma cells in bone marrow and relapse mantle cell lymphoma. Her approach to patient and nurse marketing is noted for having a remarkable balance of marketing strategy and audience empathy. Her marketing strategies combine her knowledge of the landscape, analytical approach to problem-solving, and data-driven decision-making. When merged with her insights on target audiences and segments, best practices and successful strategies and tactics emerge. Ms. Scipione is driven and inspired by people who are living with multiple myeloma and mantle cell lymphoma. “I love hearing their stories, I have pictures of patients in my cube to keep me focused,” she says. “I am not making and marketing cupcakes. Not that cupcakes are a bad thing, I love cupcakes, but every day I see these patients faces so even if I’m dealing with a 12-hour day I remember those individuals are dealing with so much more.” Recently, she had the opportunity to see first-hand the positive impact one of her Velcade patient education programs had on an audience. While sitting in the back of a ballroom, she observed how intently the people in the audience were listening to Dr. Joseph Tariman, from Northwestern University, who was explaining the complexity of multiple myeloma and treatment with Velcade. “Knowing that my program helped answer questions and concerns that people have about their cancer and that because of this program they are better educated to deal with what’s to come was truly impactful,” she says. There is tendency in product-line marketing to simply get the product out the door. But this is the antithesis of the approach Ms. Scipione takes. She truly understands the value of her product line and how much Velcade has helped so many myeloma and mantle cell lymphoma patients. Patients are not just “customers,” to her they are real people, with real problems, and real fears who are going through a radical change in their lives. Ms. Scipione realizes this and makes it her duty to be out in the myeloma community, in particular, as much as she can, providing information, acting as a communications conduit between the company and patients or medical professionals, and sometimes just being a smiling, friendly face for someone in need. Her sense of humor and heartfelt concern have endeared her to hundreds of myeloma patients across the country, where she is continually involved in supporting events and other opportunities to connect with the myeloma community. Even as she professionally continues to strive to create an environment of “educated patients” as a priority in the industry, her commitment to patients extends to her personal life. She currently sits on the board of directors of a grassroots patient advocacy organization called Upstage Lung Cancer, which was established to support the fight against lung cancer by raising awareness and supporting research for early detection and innovative treatments. She joined her dear friend and a lung cancer survivor Hildy Grossman in the grassroots effort to raise substantial funds for clinical research. “Music and musical theater entertainment is our means to raise funds to accomplish our mission, and as Hildy says ‘we won’t stop until we upstage lung cancer,’” she says. Title: Associate Director, Velcade Patient and Nurse ­Marketing Company: Millennium: The Takeda Oncology Company Education: BS, Cambridge College Family: Husband, James; three children — James Jr., Melissa, and Megan; son-in-law, Chris; grandson, Cameron Hobbies: Photography Bucket List: Share traveling experiences and favorite places with her husband; enroll in biology/science courses and learn something new; put on paper her ­family ­genealogy for future generations; learn how to make ­curtains; have a closet dedicated only to shoes Associations: Upstage Lung Cancer; ­Parkway Pop Warner Football; Healthcare Businesswomen Association Social Media: Jamie Ring Genzyme, a Sanofi Company Fatima Scipione Millennium Pharmaceuticals Inc. Abbe Steel United BioSource Corp.

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