Could you share some highlights from your personal and professional journey that led you to your current role and passions in healthcare, patient advocacy, and health equity?
Before my diagnosis of non-radiographic Axial Spondyloarthritis, I was a vice president at an architectural firm and a college professor. I was active and healthy, but then I experienced extreme fatigue, body pains, and low-grade fevers. No medical professional could diagnose my condition, and it took almost two years to figure out what was wrong with me. This experience led me to become passionate about helping others with chronic illness. I am dedicated to improving access to therapies and techniques that can help people like me.
What are some notable highlights about AiArthritis’s mission you can share?
AiArthritis is a patient-led organization founded to increase awareness, advocacy, and research for autoimmune and autoinflammatory diseases, including inflammatory arthritis. We are pioneers in precision medicine and have influenced legislation to benefit patients. In 2024, we are launching the AiArthritis Research Database to collect data for early diagnosis, therapeutic response, and public policy advocacy.
Tell us about your new grassroots public policy program, Knowledge Patient-Led Public Policy Classroom.
We have launched a new program covering Step Therapy, Accumulator, Precision Medicine, and Value Assessments, with two levels: learning and elevated experience. Our public-facing classroom offers interactive webinars led by staff, volunteers, and guest speakers. We also have a patient-written glossary and video library, with IVI as a Library Collaborator. Our elevated experience sector launches in January with opportunities for public comments, writing legislators, coalition participation, and AiAdvocate volunteerism.
What are the key challenges in patient advocacy and arthritis community access to therapies and equity issues? How can organizations better address them? The value of educating patients on HTA and its impact on their health journey?
The patient community faces the threat of losing access to effective treatments. Our diseases are heterogeneous, but formulary creators assume a homogenous group. Non-medical switching and other utilization management issues further complicate the situation. Health Technology Assessments, Prescription Drug Accessibility Boards, and Government Price Setting strategies add to our struggles. Patient voices must be heard now more than ever. AiArthritis is committed to educating patients about why they should participate more actively in HTA and other economic endeavors through peer-to-peer learning.
You sit on several health technology assessment (HTA) patient advisory councils to offer the patient perspective; from your experience, how could these assessment organizations/ agencies improve their processes?
Here are some ways you can improve patient advocacy and the AiArthritis community access to therapies and equity issues:
- Raise Awareness: Educate the public about inflammatory arthritis and other autoimmune and autoinflammatory diseases to increase awareness and understanding of patients’ challenges. This can be done through social media campaigns, community events, and public speaking engagements.
- Advocate for Better Access: Work with lawmakers, insurance companies, and other stakeholders to improve access to effective treatments and therapies and address equity issues. This can involve advocating for policy changes, participating in advocacy groups, and speaking out about your experiences.
- Support Research: Encourage and support research into new treatments and therapies for inflammatory arthritis and other autoimmune and autoinflammatory diseases. This can involve participating in clinical trials, donating to research organizations, and sharing your experiences to inform research efforts. Participating is vital so we can utilize the data to influence policy.
- Empower Patients: Provide resources and support to help patients navigate the healthcare system, access treatments and therapies, and advocate for their own care. This can include educational materials, support groups, and patient-led initiatives like the Knowledge = Empowerment Patient-Led Public Policy Classroom.
As for the value of educating patients on HTA and its impact on their health journey, patients must understand the role that HTAs play in determining which treatments are covered by insurance and how they are priced. This knowledge can help patients advocate for their care and ensure access to the treatments they need to manage their condition.
What drew you to get involved with IVI? Any advice for other organizations looking to partner with IVI?
IVI shares AiArthritis’ values of finding unique solutions for patient-reported problems without prior blueprints and is making strides in HTA process innovation. If you’re considering partnering with IVI, I highly recommend it – especially if you’re interested in improving current HTA practices. IVI is already taking action and joining their group would be a step towards achieving your goal.