Rheumatic diseases affect an estimated 50 million adults in the United States. This chronic and debilitating disorder strikes at any age, impacts all populations, and is predicted to rise to 78 million by 2040. As such, the demand for improved patient care and treatments is more important now than ever. The Frances Hamburger Institute (FHI) is laying the groundwork to ensure that everyone with this illness will receive accessible, cost-effective, quality care today and in the future.
Founded and initially funded by rheumatologists, the FHI has the distinction of having input from a global roster of physicians and world-renowned researchers all working collaboratively on initiatives and projects to make living with rheumatic diseases easier and less frightening.
Led by executive director Michele L. Hamburger, the FHI was created to honor the legacy of her late mother-in-law, Dr. Frances Hamburger. “Fran was a force. She was smart, driven, compassionate, and loving,” recalls Hamburger. “She was a respected clinical psychologist, married to a rheumatologist, and suffered from a rheumatic disease that severely impacted her life. Having gone through her own battles with this illness, Fran dedicated the last decade of her career advancing rheumatic disease care for the betterment of community rheumatologists and their patients.”
Personal experience
Hamburger herself struggles with rheumatic maladies. “I have been diagnosed with two autoimmune diseases: psoriatic arthritis (PSA) and myasthenia gravis (MG),” says Hamburger. “My father-in-law, Dr. Max Hamburger, MD, FACP, first noticed my PSA symptoms that consisted of aching hands, swollen thumbs, and psoriasis. An ultrasound revealed visible joint damage confirming a PSA diagnosis. In 2018, a new set of symptoms emerged: brain fog, double vision, dizziness, fatigue, and muscle weakness that, after countless visits to various doctors was, to my relief and fear, finally diagnosed as MG.“Through my experience, I have learned that the journey of a rheumatic patient is extremely frustrating and lonely,” continues Hamburger. “You have no choice but to be your own advocate and fight to be heard and cared for. Mastering the art of living with a chronic illness is difficult beyond imagination. Knowing this firsthand makes me more determined as FHI’s executive director to do whatever I can to help improve the lives of patients afflicted with these illnesses.”
In shepherding FHI’s mission to improve the standard of care for rheumatic patients, Hamburger’s initial efforts were hampered by longstanding divisions between stakeholders within rheumatology. She recognized that in order for the FHI to have any meaningful impact on the rheumatic community, this needed to change. “After multiple conversations with various stakeholders, it became apparent that there was an every-man-for-himself mentality,” says Hamburger. “I noticed that they stayed in their own lane and never ventured out of their areas of expertise. There was little interest in collaboration.”
“The reason for this is that rheumatic disease is big business,” continues Hamburger. “And so, we needed to provide a safe space for stakeholders to set aside their respective monetary interests and collaboratively focus on the patient. As such, the first annual Stakeholder Roundtable was born out of the concept that we are stronger together. Only when everyone’s interests were aligned could we guarantee the success of FHI’s mission.”
A common goal
On June 19, 2020, in the midst of the COVID-19 outbreak, leading stakeholders within the rheumatology community encompassing biomedical innovation, data science, diagnostics, government policy, mental health, patient advocacy, payers, physicians, providers, and researchers came together in a virtual setting to identify ways of improving the rheumatic healthcare ecosystem. “The pandemic had a devastating effect on our healthcare system,” says Hamburger. “All of our stakeholders had understandable concerns regarding COVID-19’s impact on the rheumatic patient population given their higher risk for infection. And so we refocused our agenda to address this matter of urgency.”
From the in-depth and informative discussion, the FHI’s stakeholders concluded that their ability to effectively treat and reshape the experience of rheumatic patients, in the age of COVID-19 and beyond, depends on the integration of five key areas: access, telemedicine/telehealth, cost, patient-centered care, and mental health. “By identifying the gaps in these sectors, the FHI will foster and support initiatives and projects geared towards improving the patient’s journey from diagnosis to treatment to follow-up care to recovery,” says Hamburger. “We will also publish four white papers with detailed analysis of the Roundtable’s findings and recommendations as well as define actionable steps for the improvement of rheumatic patients’ treatment and care. Ultimately, the future of our specialty, and the well-being of those with rheumatic diseases, depends on the continued collaboration of stakeholders so that the promise of a brighter tomorrow becomes a reality.”