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The Challenge
Amyloidosis is considered a rare disease and is not well known. However, there is a belief within the medical community that this disease is not rare, it is underdiagnosed or diagnosed when it is too late to make a difference. The complexity of this disease makes diagnosis one of the biggest challenges affecting patient lives. It is not uncommon to hear from patients that it took multiple years and multiple doctors to ultimately arrive at a correct diagnosis, all the while the disease continued to progress. Until a cure is found, it is imperative to raise awareness within the medical community so that a diagnosis can be determined much sooner, enabling effective treatments and therapies to slow the disease progression and improve patient survival.
What We Are Doing About It
The Amyloidosis Speakers Bureau (ASB) is an initiative focused on educating the medical community about this disease through presentations from amyloidosis patients, an informational video, and our online educational library. Our target audience is the next generation of doctors during their first/second year of medical school. At this stage, the medical school curriculum includes an introduction to diseases, making this the appropriate target audience. Also, at this point medical students have yet to declare their specialty; thus, the ASB can educate future doctors of a wide array of disciplines (e.g., cardiology, ENT, hematology, hepatology, internal medicine, nephrology, neurology, oncology, orthopedics, pathology). This is important because amyloidosis has many variations (e.g., AL, AA, ATTR) which present themselves in a variety of ways. There are approximately 170 medical schools across the country, each with annual classes of medical students that typically range from 50 to 250. Thus, in aggregate, our goal is to educate thousands of future doctors every year. These thousands of doctors will go on to declare their specialties and spread across the country in practice. As a result, the potential to improve and accelerate the diagnosis of amyloidosis from the ASB is immense.
What We Offer
While our amyloidosis patient presentations began in-person back in 2019, since the pandemic began in Q1 of 2020 we expanded to offer two excellent virtual alternatives. These virtual offerings have been shared with thousands of medical students across the country and have been well received.
1a) Live virtual presentation. Hosted by schools, our patient speaker provides a live virtual presentation of their journey with this disease, from symptoms through diagnosis and treatment, and life today, followed by real-time Q&A. Typically one hour in length, we are very flexible and work with each school’s desired date and time.
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1b) Pre-taped patient video presentation. If more convenient, we’re happy to share one of our pre-taped patient speaker presentations where our speakers take the audience through their early symptoms, diagnosis, treatment, and “new normal” life today, offering their perspective as a patient with a rare disease. Schools are able to send a video link to your cohort and they can view on their own time, offering maximum flexibility.
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2) Informational video titled “Amyloidosis Awareness,” narrated by Michael York and developed in conjunction with amyloidosis experts.
3) Access to our curated Educational Library which contains Powerpoint presentations by leading medical professionals about the disease. One excellent example is “Diagnosing Amyloidosis: From Cardiology to Neurology” by Dr. J. Mark Sloan from Boston University’s Amyloidosis Center, including patient and pathology pictures, and clinical diagnostic information.
For curriculum course directors:
- Our speakers are all volunteers and amyloidosis patients. To prepare them, we provide extensive resources both in story development and presentation skills. Our speakers provide a personal, transparent and candid insight into their journey not found in a curriculum.
- Our speakers are flexible and can work with specific course dates/times.
- Our offering can be adapted to accommodate individual course considerations. For example:
- a live virtual presentation during the course, or
- a pre-taped 30-minute presentation students can view outside of the course, or
- a custom combination of a speaker’s 30-minute pre-taped presentation and a live abbreviated virtual presentation/Q&A during the course.
- Our offering can be customized to focus on specific types of amyloidosis (e.g., AL, hATTR, ATTRwt) and/or organ involvement (e.g., heart, kidney, liver, GI, nerves) to align with curriculum topics.
- Course directors can view speaker presentations in advance to ensure appropriateness for their students.
- Many of our speakers are willing to collaborate with course directors to share selected clinical data/results with the students.
- We do not, nor do our speakers, advocate for industry interests, specific drug treatments, healthcare providers, politics, or religion. As such, we are able to maintain a conflict-free focus.
- There is no cost to you.
We believe, and feedback confirms, our offering provides a compelling alternative that advance students’ knowledge of amyloidosis while sharing valuable insights from both the patient and clinical perspectives. If interested, please contact us at asb.mm713@gmail.com.
Our Impact – What Medical Experts Say
In view of the non-specificity of its symptoms, amyloidosis is frequently diagnosed late in the course of the disease. In spite of the fact that therapies are available for virtually all forms of amyloidosis, delays in diagnosis result in end-organ failure which is generally irreversible. There is a major educational gap leading to the late diagnosis of amyloidosis. Thanks to the Amyloidosis Speakers Bureau, providers across the country are being instructed on techniques to suspect and recognize amyloidosis and how to efficiently make the diagnosis in a timely fashion. Incorporating testing for amyloidosis into the work flow of patients with cardiomyopathy, proteinuria, peripheral neuropathy, unexplained weight loss, and smoldering multiple myeloma has been successful. I strongly support incorporation of a member of the Amyloidosis Speakers Bureau into the curriculum of all medical students, all medical residents, and subspecialty fellows in Cardiology, Nephrology, and Neurology.
Comprehensive education remains the best strategy to save lives for this rare disorder and I am strongly supportive and actively participate in the speakers bureau program.
Morie A Gertz, M.D., M.A.C.P., Mayo Clinic
There has been a paradigm shift in the diagnosis and treatment of systemic amyloidosis. Tomorrow’s doctors need to learn about this. I am a hematologist with three decades of clinical experience and research, and deeply involved with amyloidosis, developing a center of excellence at Tufts in the diagnosis and treatment of patients from around the world.
Without question, a major challenge with amyloidosis is its complexity and the subsequent delays in diagnosis. Moreover, there are different types of amyloidosis, including hereditary and non-hereditary. Symptoms vary, as do the organs affected by the amyloid protein. This unpredictable and multi-faceted presentation often delays the diagnosis and therefore the course of treatment. Today we have effective treatments for the common types of systemic amyloidosis, making the delays in diagnosis more tragic in many cases. One of the most important objectives to improve patient survival is earlier diagnosis. With modern tools, this can be accomplished in less than a month. Charolotte Raymond, who developed the original idea of the ASB, has been my patient. Her passion and intensity sparked this initiative, and the partnership forged with Mackenzie’s Mission in early 2019 helped to refine the idea and bring it to fruition. The ASB is well-organized and supported by dozens of expert advisors. The ASB is designed to make a durable impression on medical students – those who will be diagnosing this disease in the not too distant future – because of the quality of their speakers, who are real-life patients, and the up-to-date nature of their extensive educational packet.
I strongly encourage you to integrate the resources made available by the ASB into your first/second-year medical school curriculum. It will make a difference.
Raymond L. Comenzo, M.D., Professor of Medicine, Tufts University School of Medicine
Excellent way to introduce students not only to a rare disease but also to patients’ perspective.
Maria M. Picken, M.D., Ph.D., Director of Surgical Pathology, Loyola University Medical Center
Our Impact – What Medical School Professors Say
By making patient speakers and educational materials curated by ASB’s medical advisors available to medical schools, it is my hope that the Amyloidosis Speaker Bureau will help form durable impressions on medical students and physicians that will translate to more widespread awareness, faster diagnoses, earlier initiation of treatment, and ultimately better survival for amyloid patients. I encourage you to integrate the resources made available by the ASB into your annual curriculum, as it has the potential to significantly alter the course of this disease.
Gordon Huggins, MD, Associate Professor of Medicine, Tufts University School of Medicine, Cardiologist, Tufts Medical Center
The ASB was such a wonderful organization to work with – they were willing to provide different options to make the experience meaningful for our students. The speaker was truly outstanding. The students had many questions and she answered them thoughtfully and graciously. We will definitely do this again for our students and are grateful to the ASB for this service.
Deborah E. Powell, M.D., Dean Emerita and Professor of Laboratory Medicine and Pathology, University of Minnesota Medical School
The opportunity for second year medical students to hear the story of a patient with amyloid is invaluable. The presentation addressed aspects of pathophysiology they are learning and the human side of medicine. This presentation format offered an excellent teaching opportunity to inform doctors-in-training about this serious disease. Our students gained insight into the patient’s journey through diagnosis, treatment and the challenges ahead. We all appreciated the patient’s generosity in sharing her experiences. Having patients teaching medical students about amyloidosis will have a lasting impact on our future doctors with increasing awareness of this disease and ultimately will help future patients.
Theresa Kristopaitis, M.D., Professor, Assistant Dean for Curriculum Integration, Loyola University Stritch School of Medicine
This organization is very well-run and professional. The speakers were engaging, well-informed and also delivered some great first-hand advice to students on how to approach patients. They were quite encouraging and the format of the panel made for a very efficient session.
Kimberly Densmore, Medical Colloquia Coordinator, University of Illinois College of Medicine
Our Impact – What Medical Students Say
The presentation helped put a human face to a disease that is often only seen in test questions. You can easily forget a question, but it is much harder to forget a face. Mayo Clinic Alix School of Medicine; Ramin Garmany, MD-PhD candidate
Amyloidosis is something we often call a “Zebra” disease. Its presentation is odd and confusing and its treatments few. Since AL is most treatable early, keeping it in your differential is so important. Having ASB talk at my school reinforced that idea. I believe that I will be a better physician for having attend this lecture. University of Illinois College of Medicine Rockford; Rachel Miller, MD Candidate
This presentation was a wonderful supplement to my medical education because it brought amyloidosis to life and reminded me that there are actual people behind these devastating diseases. During the second year of medical school, it can seem very disconnected and abstract to study disease after disease and memorize the clinical presentations, treatments, and prognoses. It is refreshing to hear from an actual patient and be reminded of why we’re in medical school. Loyola University Stritch School of Medicine, Alexis Stefaniak, MD Candidate
Being able to hear from a patient with a specific disease, whether common, rare, or somewhere in between, is so important for both our academic education as well as our development as doctors. During the preclinical years, it can be easy to get lost in the textbook descriptions of patients and forget about what real patients actually go through. Talking to real patients makes me remember why I went into medicine in the first place. Yale School of Medicine, Alexander Hirsch, MD Candidate
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Mission: “Patients Teaching Students”
The mission of the Amyloidosis Speakers Bureau is to educate the medical community about amyloidosis through patient stories which, we believe, will contribute to earlier diagnoses of the disease and lead to improved patient survival.
Vision
Our vision is a world where amyloidosis is a widely recognized disease, identification methods are established and integrated into mainstream protocols, and diagnosis happens early in the onset of the disease. In this world, there will be no need for a speakers bureau.
Advisors
We are proud to have these medical experts and influencers in the world of amyloidosis, some of whom are also patients, as advisors to support our initiative. Our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as educational development, medical school introductions, and patient speaker assessment/development. We are extremely grateful for their assistance and believe that, thanks to their contribution, the ASB will make an even bigger difference in the diagnoses of this disease.
Morie A. Gertz, M.D., M.A.C.P.
Craig C. Hofmeister, M.D., MPH
Michael Alan Rosenzweig, M.D., M.S.
Janice F. Wiesman, M.D., FAAN – In Memoriam
David Wolinsky, M.D., FACC, MASNC
History
In the summer of 2017, Charolotte Raymond was undergoing treatment for amyloidosis at Tufts Medical Center. There, she met with Gordon S. Huggins, M.D., Cardiologist and Associate Professor at Tufts University School of Medicine. After learning more about Charolotte’s story, Dr. Huggins invited her to speak to his second-year medical students. He explained that medical school’s second-year curriculum focuses on illnesses and diseases, and hearing about a rare disease directly from a patient would have a lasting impact on the audience of future doctors. In fact, the feedback from Charolotte’s presentation was so meaningful that it inspired her to develop the concept of a speakers bureau, comprised of patients, whose focus was to reach out to the medical schools across the country and raise awareness of the disease. After much searching, Charolotte approached Mackenzie’s Mission, whose purpose was strongly oriented towards raising awareness, about bringing her concept to fruition. In February 2019 the Amyloidosis Speakers Bureau was launched.
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Disclosure:
Neither Mackenzie’s Mission nor the Amyloidosis Speakers Bureau endorse any company, product or treatment. Patient speakers are unpaid volunteers who may, at their own discretion, mention specific treatments, healthcare centers, and physicians while sharing their personal journey.
The Amyloidosis Speakers Bureau is supported predominantly by Mackenzie’s Mission through all facets of program management, fundraising activities and general donations, and to a lesser part by directed donations and grants from Akcea Therapeutics, the Amyloidosis Foundation, Amyloidosis Support Groups, Alnylam Pharmaceuticals, Eidos Therapeutics, Pfizer Inc. and Southwest Airlines. No donors or grantors have any influence over any facet of the ASB operations.
