Pfizer Rare Disease
Pfizer is one of the world’s premier biopharmaceutical companies, with a range of focus in rare disease, looking at hematology, neuromuscular disorders, and pulmonary diseases. Pfizer has adopted an innovative and collaborative approach to the development of new medicines for patients with rare diseases. By creating strategic partnerships with academic institutions, patient advocacy groups, and commercial enterprises, Pfizer has been able to accelerate the development of novel therapeutics across the entire spectrum of rare diseases. This strong commitment to collaboration is highlighted by the Rare Disease Consortium agreement between Pfizer, and six of the leading Universities in the UK, providing a vehicle to work collaboratively with leading physician scientists on drug discovery projects.
Nowhere has Pfizer been more collaborative, or committed, than in Hemophilia.
For over 18 years, Pfizer has worked to develop and improve upon therapies for both Hemophilia A&B, allowing a generation of young adults to experience relatively normal, active lives, with typical life expectancy. This is all the more exceptional when we consider that just a few generations before, patients rarely survived past the age of eight, and if they did, they lived with debilitating joint damage, pain, and fear of what the next bleed would bring.
Pfizer's Guiding Principles
Scientific Innovation
Pfizer scientists and research partners apply the latest advances in science and technology to meet the most demanding healthcare challenges of today, with an eye always on the future of therapies for rare disease patients.
Public Health Impact
Pfizer medicines and vaccines save or improve countless lives, and consumer products, like the new The HemMobile® Striiv®Wearable empower people to take care of themselves.
Partnership
Pfizer partners with governments, non-profits, and other organizations to ensure that more people around the world have access to the medicine and resources they need.
Ethics and Best Practices
Pfizer promotes only the highest standards of ethical behavior, industry compliance, and personal integrity in everything it does. With exacting policies and procedures, industry-leading training programs and internal monitoring and auditing, Pfizer is committed to complete, and transparent ethical accountability.
GutMonkey is an experiential education company whose mission is to design and deliver engaging, relevant, and emotionally-centered programs that psychosocially support, and navigate people towards better adherence to a wide range of healthcare behaviors. We have a 13 year history in bleeding disorders that began at summer camps and has evolved to encompass programs that focus on the diverse needs and demographics of the entire bleeding disorders community. We serve this mission through programs that attempt to address 4 key areas of medical education:
Improve Health Outcomes
Build Community
Dismantle Stigma
Increase Awareness
The Bleeding Disorders Community
GutMonkey has 17 years of experience in finding creative ways to engage:
Teens & Young Adults
GutMonkey has been particularly committed to teens and young adults, a demographic we qualify as being between the ages of 13-30, and who are very diverse in their geographic dispersion, race, ethnicity, socioeconomic status, background, experiences, physical and developmental abilities, level of education and exposure to opportunities. We do not intend to generalize teenagers or young adults in the bleeding disorder community, however, GutMonkey views this age range as a developmentally related span. As teenagers transition into young adulthood, many of the cognitive and social skills we marshall as adults are still being developed well into our twenties. Thus, the challenges facing this broad demographic are similar, and may lead to negative behaviors and significant impacts on medication adherence, as suggested by both clinicians and academic literature. Anecdotal accounts have been collected from community members in an attempt to illuminate some of the core issues of this target group as a way to better understand their needs, challenges, and behaviors. These compounding issues are taken into consideration when designing program components, and often include:
Lower expectations from parents and educators around level of involvement, ability to succeed, etc…
The unique developmental stage of young adulthood, with a focus on the present rather than the effects of long-term choices and behaviors
Emotional issues such as anxiety and depression arising from fears and limitations associated with having a bleeding disorder
Struggles with self-infusion and the shame of admitting that as a young adult
Confusion around important issues like employment, insurance, genetics and safety
Low adherence to prescribed treatment program
Low adherence to treatment as a means to create a sense of control or independence
Consequences of unstable insurance coverage
Basing employment and career planning on access to insurance
Use of state or federal disability as income
Employment with low expectations and little career development from home health companies
Abuse of pharmaceuticals; ex. pain killers and/or other illicit drugs
Mature Adults
Mature adults, those above the age of 30, also face challenges around health care management and good self-care. While the adherence to prescribed treatment regimens may be better, older adults are juggling different responsibilities with parenthood, career development, home ownership, the care of aging parents, and the effects of their bleeding disorder on their joints and mobility. These realities can all contribute to a lack of physical activity and overall attention to broader healthcare maintenance. In addition, this group is also dealing with the medical challenges from aging that anyone encounters on top of their bleeding disorder concerns. As a result, this group also faces different psycho-social considerations and issues, including:
Overall emotional health challenges from dealing with the various ways that living with a bleeding disorder presents for an individual over a lifetime
Healthy sexual relationship concerns stemming from possible comorbidities, body image issues due to bleeding disorder related limb atrophy and joint fusion, reproductive struggles, heavy menstrual cycles, and performance concerns stemming from mobility challenges
Emotional issues arising from the effects of their bleeding disorder on their body and the impact of HIV and Hepatitis C on themselves and/or their community
Career and job concerns based on challenges with maintaining a steady presence at a job and struggles with limited choice around profession due to physical challenges
Decisions around parenthood, and the impacts of being a “carrier”
Concerns over disclosing their bleeding disorder status and/or comorbidity status to friends, potential employers, significant others, and/or children
Anxiety stemming from a concern about access to care as they age
The overall implications of living with pain from infusions, bleeds, joint disease, etc…
Opioid abuse and pain management challenges
Why GutMonkey?
The History
Pfizer and GutMonkey have a long collaborative history, beginning with the first Leading Edge teen programs offered to chapters in 2006. The relationship hit another milestone in 2013, with the first Leading X trip for young adults with Hemophilia, a truly groundbreaking program, incorporating adventure education concepts and real physical challenge in a six-day sea-kayaking trip. That trip would bring national attention at the following year’s National Hemophilia Foundation Annual Symposium. Val Bias was so moved by the short documentary made about the first Leading X expedition, he insisted on sharing it during his opening session. Pfizer and GutMonkey responded to the community outpouring of excitement with four Leading X trips in 2015, creating more opportunities for people with Hemophilia to get active and inspired about what they were capable of achieving with proper treatment. Pfizer also supported an expansion of the Leading Edge program to include Keynote presentations, in addition to teen or teen-parent programs. As of 2017, GutMonkey and the Leading Edge contract with Pfizer, are reaching close to 2,500 patients, and family members in the bleeding disorders community with relevant, experiential programs that are not just changing behaviors, but changing lives.
Pfizer should be proud of this consistent commitment to investing in the health and success of individual patients for 11 years.
The Future of Hemophilia Care
There is a lot of new territory to be explored in the decade ahead for Pfizer, and GutMonkey will continue to offer authentic and important opportunities for Pfizer to connect with patients and provide unique, high-quality medical education as therapies evolve. In our time in Hemophilia, we have seen incredible advances in the standard of care for patients, as well as the range of therapies available. Pfizer has long been a leader in these areas, and once again is positioning itself to become the leader in gene therapy, an incredibly exciting opportunity for both A and B patients. In considering the need to both raise awareness around what gene therapy is, as well as provide education around why patients should be considering how gene therapy might impact their lives, Pfizer will want to pay special attention to how it continues to engage the community it hopes to convince of gene therapy’s efficacy and relevance.
Pfizer has done a tremendous amount of work, and made considerable investments in building relationships within the Hemophilia community with trusted partners like GutMonkey. Pfizer will want to develop a strategy for keeping the community engaged, and fully tell the story of what the company is doing to continue to invest in Hemophilia patients. GutMonkey is a proven partner in engagement strategy, and Pfizer is the only company in the marketplace offering programs of the vision and scale of Leading Edge and Leading X. Now is the time to lean into the history that we have created through those programs, and talk about the exciting future that we all share. Imagining what will be possible with gene therapy is a story GutMonkey would very much like to explore, and legacy programs like Leading X are a powerful way to do so.
Exploring What's Possible
Exploration is at the core of our company mission and our programs are designed to reflect that. Whether we are literally exploring a landscape from the hull of a canoe, or we are using that landscape as the metaphor to begin an exploration of how we feel about a particular subject, exploring what is possible, and redefining what is possible as a result, is what we do. Pfizer has the opportunity to use this incredible alignment between our two organizations to engage in otherwise unattainable patient engagement. Chandler Chicco may understand the role of patient advocacy and influencer potential, but they cannot deliver on it the way GutMonkey can. Inventiv Health will offer you patient engagement planning, and behavioral and adherence-based programs, and will then contact our organization to run them. They already have. These agencies rely on organizations like GutMonkey to bolster the relevance of their offerings and fee structures. They cannot create the level of engagement or content that GutMonkey already does. Let’s use the story of our shared history to Pfizer’s advantage, at a time when Pfizer needs a patient engagement strategy that understands its position in the marketplace, it’s history with the community, and can design programs that more effectively tell the story of what Pfizer is trying to make possible for the Hemophilia community. GutMonkey doesn’t need to be briefed on any of these critical areas of understanding, because we have been by your side for over a decade.
2018 Program Opportunities
16 Leading Edge Programs
Leading Edge is by far the most essential offering we provide to the bleeding disorders community. Each year, GutMonkey focuses on a theme that is of particular relevance for the community in broad, psychosocial terms: stress, goal setting and achievement, depression and anxiety, and physical activity to name a few. Using that theme to focus our educational objectives around, GutMonkey designs an interactive teen program that can be used at an existing chapter or summer camp event, or can be used as the foundation for a teen or teen-parent retreat. Throughout the highly engaging six to eight hours of program time, GutMonkey facilitators are constantly bringing these themes around to the essential conversations of bleeding disorder education and management. Teens and young adults often disengage the minute they hear “adherence to prescribed treatment” or “exercise for better joint health,” which are both topics we address. The value of the program design in Leading Edge is that we get to those topics by bringing teens into fun, and engaging experiences that authentically allow us to bring the medically educational topic or insight into the conversation. We hear over and over again how important the Leading Edge program has been in helping chapters develop better teen events, and better overall skills in engaging their young people in medically relevant education.
GutMonkey is incredibly proud to share this unrivaled program with the community, a program that has substantially increased the level of youth engagement, and that puts Pfizer in a stand alone place in the sponsored programs landscape, as the only dedicated teen program that is completely tailored to the needs of chapters and the developmental realities of teenagers.
Leading Edge can also be a keynote presentation, either bundled with programs mentioned above, or as part of a package that could include a breakout session for a chapter event. Once again, the theme of a particular year is engaged as the overall topic, which is then tailored into an incredibly interactive presentation. GutMonkey keynotes are not sit-down and tune-out affairs. People will be up and moving, engaging with their neighbors at the table next to them, laughing, and possibly crying, all within 60-90 minutes. Staffing and design are always sensitive to chapter requests and the specific themes of the symposium or retreat. GutMonkey is able to present Leading Edge in front of thousands of patients per year and give direct recognition to Pfizer for funding these influential and incredibly well-regarded events.
Total Investment: $170,000
*Investment per program: $10,500
GutMonkey Program Fees: $120,000
Expenses: $50,000 (includes: staff flights, ground transportation, rental car, travel meals, hotel accommodations, and all program materials)
NACCHO Conference
Pat Torrey has been a part of the NACCHO community as a funded speaker for first Wyeth, and then Pfizer since 2006. Camps throughout the country know our team and talk about what valuable training they get from our specific presentations, which make direct connections to the impact that NACCHO has on their camp culture. We offer numerous breakout sessions throughout the conference, as well as an opening session or a keynote that highlight a variety of topics that we want to see supported in camp culture, including diversity and inclusion as a community value, positive and proactive engagement with youth to avoid behavior issues, and all the ways that activity and good healthcare management allow both kids and adults affected by a bleeding disorder to thrive.
GutMonkey has the opportunity to spotlight the other ways that Pfizer supports our programs in the community, including Leading X, and a tremendous amount of community engagement happens around Leading Edge programs at NACCHO. In 2017, we had all 16 of our Leading Edge programs filled by the first day of the conference, and left with an 11 chapter waiting list. GutMonkey works closely with the NACCHO leadership, and committee members to incorporate the theme for each year, select breakout sessions that compliment other offerings, and deliver the highest modeling of youth and community engagement. Not only do we bring all of this incredibly valuable programming under the Pfizer banner, but GutMonkey participates on a very different level than other presenters, playing with attendees, sitting right alongside camp directors in sessions, and doing the relationship building that we know brings both our organizations tremendous and unmatched presence in the bleeding disorders community.
Total Investment: $30,000
GutMonkey Program Fees: $24,000
Expenses: $6,000 (include: staff flights, travel meals, hotel accommodations, and program materials)
4 Leading X Expeditions
Leading X was born out of a desire to provide young affected adults with a rite of passage experience that allowed for the exploration of some of the biggest questions a person navigates around a chronic health condition. Modern life for a young person does not typically create opportunities for self-reflection, but it does put young adults into situations where critical decision-making and leadership skills are essential. With Leading X, we provide both the space to develop and practice these critical skill-sets, as well as the opportunity to reflect upon and digest those experiences internally.
Another equally important objective of Leading X is to spark a desire for physical activity within the bleeding disorders community. We know that treatment now allows folks to be physically active in ways previously unimaginable, but we have years of cautionary messaging, and cultural inertia to overcome. According to the C.D.C, as of 2015, only 50% of Americans over the age of 18 were meeting the recommendations for aerobic physical activity, and 79% were not meeting the recommendations for strength-training and aerobic activity. In communities already affected by a condition that has historically inhibited activity, this cultural reinforcement means that we have current and emerging generations of Hemophilia and von Willebrand’s patients that are more likely to be disabled by obesity, stroke, and heart disease than their bleeding disorder. We would like to help change that, and see healthy, active patients enjoying the newly earned longevity that factor therapies offer.
4 Leading X Expeditions will be led by our staff in coordination with our expert guiding company, Breakwater Expeditions. GutMonkey will coordinate the program design, facilitation, and recruitment on a national level. Where appropriate and allowed, Pfizer Patient Liaisons could also assist in recruitment for these programs. All trips will be staffed with a hematology experienced nurse.
Program fees also reflect the cost for GutMonkey staff to shoot footage using high quality digital equipment, deliver raw media, edit videos, and collaborate on media initiatives with Pfizer, as well as its advertising and PR partners.
GutMonkey will provide Pfizer with three 60 to 90 second videos and a gallery of high quality images for each Leading X program, as well as raw footage which could be used by Pfizer and its affiliates in social media and out-of-home markets. Additional edits could also be used at the NHF Annual Meeting, HFA Symposium, or other large community events. GutMonkey and Pfizer will share copyright ownership of all media captured and edited by GutMonkey.
Total Investment: $168,000
*Investment per program: $42,000
GutMonkey Program Fees: $84,000
Breakwater Expedition Outfitters: $55,000
Expenses: $29,000 (include: staff flights, nurse flights, travel meals, hotel accommodations, and program materials)
Click the center of each image to see videos built by GutMonkey for Pfizer.
