Allen Doederlein, Depression and Bipolar Support Alliance
Among people who advocate for any health issue, there often exists a dynamic tension between championship of the perfect treatment scenario for each individual with a particular condition and, on the other hand, the desire to meet the most important and frequently occurring needs of as many people as possible within the total population affected by the same condition. Philosophically and idealistically, many advocates (myself included) believe that both the individual and collective needs should and also could be achieved with the right combination of will, persistence, and strategic, thoughtful allocation of resources. However, in the real world—a frustrated world where public resource direction and privately achievable access tend towards scarcity rather than abundance—we all too often find ourselves forced to choose between exactly the right interventions for a small, usually privileged group and generalized, frequently suboptimal care for a broader, more diverse and inclusive population.
With increasingly sophisticated technology that allows for intensive analysis of not just the cost, but the true value of available treatments, we can theoretically move away from the frustrated world and closer and closer to achieving the right care for the right person at the right time. A leading organization at the frontlines of determining and advising about the actual value of and appropriate resource allocation for various health-related tests and treatments is the Institute for Clinical and Economic Review, or ICER. Founded in 2005 by Steven D. Pearson, MD, MSc, who remains its President today, ICER is a nonprofit based in Boston, MA, that has a national scope and two comparative effectiveness advisory councils (CEPACs) that operate from the Midwest and New England and a technology assessment forum based in California (CTAF).
ICER has over its 12 years in existence created comprehensive reports documenting the efficacy and pricing of various medical tests, devices, therapies, and medicines and then presenting an assessment of their value to the public. ICER’s methodology and process attempt to be rigorous, data-driven, transparent, and inclusive of people affected by the health conditions targeted by the interventions on which they report. In 2011, ICER’s New England CEPAC completed a report about nonpharmacologic interventions for treatment-resistant depression and this year looked at previously existing (off-label) and new (as of 2017) treatments for tardive dyskinesia (TD), a movement disorder precipitated by use of antipsychotic medications that, while primarily used in schizophrenia and psychotic disorders, are also sometimes used to treat mood disorders.
Based on TD’s connection with mood disorder treatments, and especially because of its often quite debilitating effects on people’s well-being, to convey its real-life impact upon our affected constituents was incredibly important to the Depression and Bipolar Support Alliance (DBSA). ICER’s commitment to working with people who experience the conditions for which treatments are being evaluated was evident in their willingness not only to hear from DBSA and other colleague organizations, but also to welcome DBSA as an expert reviewer of their TD evidence report and to invite us to present the findings of our Experiences with Tardive Dyskinesia survey at their December 5, 2017 TD public meeting in Newton, MA. (See pages 11-28 of the TD evidence presentation materials for DBSA’s portion of the proceedings.) New England CEPAC members and others in attendance were complimentary and appreciative of DBSA’s articulation of the lived experience of TD, and points made within our presentation were referenced several times during the daylong meeting. ICER President Dr. Pearson, together with his key colleague Celia Segal, MPP, ICER’s Program Manager, shared, “Your presentation…was spot on, and you really helped to frame the full day by creating a clear picture about how patients with TD have been treated in the past—before these new therapies came into play—and the impact of TD on patients and their caregivers. We appreciate the energy and insights you brought into the mix and have enjoyed working with…DBSA throughout this whole process.”
DBSA was proud and honored to represent our peers who experience TD within ICER’s TD evaluation process, and we will continue to seek forums in which we can highlight the unmet needs, challenges, perspectives, and contributions of people with mood disorders. Through such first-person sharing, DBSA—alongside Families for Depression Awareness (FFDA), our wonderful CFYM partners—will continue our vital efforts to transform the conversation about, and treatment of, mood disorders.
- How important is understanding the experience of people living with a condition when determining the economic and clinical value of treatments?