IVI had a chance to sit down with Anna Hyde, Director of Patient Advocacy at the Arthritis Foundation to discuss the organization’s goals and how they are getting involved with value assessment.
Tell us a little bit about the Arthritis Foundation and its mission and goals.
The Arthritis Foundation is boldly pursuing a cure for America’s #1 cause of disability while championing the fight to conquer arthritis with life-changing science, resources, advocacy, and community connections. By advancing research, advocacy, and disease management support, the Arthritis Foundation helps people navigate the many challenges arthritis brings.
Our science portfolio focuses on identifying cures for osteoarthritis, post traumatic arthritis, and rheumatoid arthritis. In particular, we focus on continuity of care and access to care, especially to ensure that people are able to find and maintain the treatments that will work best for them. We also recently launched our Pain Initiative. We know that pain is a ubiquitous symptom that cuts across all forms of arthritis and helping people better manage their pain is a priority across the organization.
How did the Arthritis Foundation get involved with issues around value assessment?
We initially got involved in value assessment when ICER started a review of rheumatoid arthritis drugs in 2016. At that time, value assessment was still fairly nascent for the patient community. We got a big early education in putting together comments for the review, which focused on the value assessment principles in rheumatoid arthritis. Our purpose in that process was to highlight the heterogeneous nature of arthritis and the challenges patients have in finding a treatment that works for them. People often have to cycle through two or more treatments to find one that works; oftentimes it won’t work for someone forever. We emphasized then, and now, that you can’t put a one-size-fits-all box around arthritis treatment.
We found our materials and reports to be illuminating for the ICER team as well as in other venues where we’ve presented that data. Our crusade around value assessment has been that if your goal is to improve patient access, you’ve got to understand what the barriers are and what the patient experience is as part of your process.
What is the Arthritis Foundation’s top opportunity to improve value assessment today?
Because of the increasing emphasis on using value assessment as a lever to deal with drug pricing at the state and federal level, there’s been more emphasis and hopefully some traction around finding a methodology that moves beyond the QALY. We’d like value assessment to be truly patient centered and help achieve our collective goals –to lower costs and increase access to treatment for patients.
What do you see as the biggest threat or challenge in value assessment right now?
The fact that the QALY is still considered the gold standard: it is showing up in policy proposals at the state and federal level and is still used in ICER’s value assessments. Our fear is that policymakers will implement QALY-based models as an “off the shelf” solution to drug pricing which could have a real impact on patient access. Our hope is that they will instead work with us and other stakeholders to identify a more patient-centered way of assessing value and addressing drug pricing.
What is an example of an Arthritis Foundation project currently underway that’s related to value assessment?
The Arthritis Foundation has partnered with a large group of organizations to identify areas of alignment at the state level, where many of us have not historically engaged on this issue. We’re strategizing on how to present the patient community as a critical and unique stakeholder in any conversations around value assessment.
We are partnering with IVI and others to bring the patient voice forward as much as possible through white papers, as well as communications to members of Congress and those in the policy arena to strengthen understanding about what value assessment is and what it should be.
What would you like to see from IVI to help improve the science of value assessment?
We see that IVI can act as a convener — working with stakeholders, academia, and other institutions — to improve the science of value assessment. We see that IVI has the ability to bring people together to talk about standardizing patient preferences in value assessment and then ensuring that it becomes the standard for policymakers, researchers, and other decision-makers.
What, as you see it, are some of the benefits of becoming an IVI member?
Our principles are aligned in how IVI thinks and talks about the importance of patient-centric value assessment. Your principles reflect the work that you do and your actions speak louder than words. Because of how important those issues are to patient access and therefore to the Arthritis Foundation, we felt it important to do the same. By becoming a member, we hope to show our commitment to advancing those shared goals.
