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, specifically the next generation of doctors during their first/second year of medical school, about this disease through presentations from amyloidosis patients and an online educational packet from amyloidosis experts. 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 over 170 medical schools across the country, each with classes of medical students that typically range from 50 to 250. Every year there is a new class of students for us to inform and educate. So the ultimate goal is staggering. We will be phasing in our efforts in 2019, sharpening our process and approach, and building long-term relationships with medical schools. In the ensuing years, we will be ramping up our efforts exponentially until we hit our goal of informing and educating all future doctors, which in aggregate we expect will be thousands every year. These thousands of doctors will go on to declare their specialties and spread across the country in practice. The potential to improve and accelerate the diagnosis of amyloidosis from the ASB is immense.
The ASB is directed by an operating committee of volunteers, the majority of whom are amyloidosis patients. The operating committee oversees the ASB’s program, predominantly the development of the medical school relationships and patient speakers. As ASB’s sponsor, Mackenzie’s Mission provides the operating and legal infrastructure, funding, and overall support of the initiative.
Our Mission: “Patients Teaching Students”
The mission of the Amyloidosis Speakers Bureau is to inform and 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.
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.
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.
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.
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 fundraising activities and general donations, and to a lesser part by directed donations and grants from the Amyloidosis Foundation, Amyloidosis Support Groups and Alnylam Pharmaceuticals. No donors or grantors have any influence over any facet of the ASB operations.