Advocacy & Public Policy
Our Role in Advocacy
- We impact policy and legislation through personal patient experiences, collaborative support, and innovative programs that aim to increase the number of patients who have a voice in public policy. Everything we do at our organization is based on listening to our peers (patients and caregivers) and identifying what they say needs to happen to improve their healthcare journey. Through programs such as RANT!, our grassroots, patient-led policy education classroom, and the Patient Inclusion Council (PIC) - a patient/caregiver coalition addressing drug affordability and access issues, and peer-to-peer social media campaigns, we are elevating patient voices past the traditional advocate who is used to being "at the table".
- Research Advocacy. We strongly believe that credible research can influence policy. We aim to use data collected through our peer-to-peer conversations - and associated quantitative research - to advance legislation that impacts quality of life, access to treatments, and continuity of care.
Contact Your Legislator (USA currently) OR Send Your Story to AiArthritis and We Will Help Make Sure Your Story is Heard!
Our Advocacy Team
"We don't represent the patient voice, we are the patient voice."
The following individuals all play a key role in managing our public policy department at AiArthritis.
Mark Hobraczk, JD, MPA
Director of Public Policy
Person living with Ankylosing Spondylitis
Mark leads the advocacy department and is responsible for federal coalition participation and is the legislative lead for the Ensuring Access through Collaborative Health (EACH) and coordinating Patient Inclusion Council (PIC) government drug affordability review coalition led by AiArthritis.
Brian DuVal
Patient Advocacy Manager
Person living with Hemophilia & Crohn's Disease
Brian has built out and manages the AiAdvocates and works with Mark to execute patient/caregiver guidance and connecting them to opportunities to have a voice in policy efforts.
Ray Patnaude
Project Manager - Advocacy
Person living with Psoriatic Arthritis
Ray manages all public facing programming associated with our Knowledge = Empowerment patient-led classroom and participates in the program as an educator.
Tiffany Westrich-Robertson
CEO - Research Advocacy
Person living with Non-Radiographic Axial Spondyloarthritis
Tiffany leads the EACH/PIC coalition and all efforts related to precision medicine, Health Technology Assessments (HTA's), and data to drive policy through our AiArthritis Research Database. As a former college teacher, she is also an educator in the Knowledge = Empowerment classroom and as a focus group moderator she leads innovative efforts to increase patient engagement through patient-led conversations.
Policy Priorities for 2025
Precision Medicine/Biomarkers
Since 2015, we have worked tirelessly to ensure therapies match the right patient at the right time - as we are all individual and require different treatments to ensure high quality of life.
Research Advocacy
We are launching our NEW AiArthritis Database, housed within FORWARD: National Data Bank for Rheumatic Diseases, which will focus on precision and personalized medicine/therapies and early diagnosis. This data will be used to influence public policy.
Utilization Management (UM)
Includes step therapy, prior authorization, non-medical switching, as well as AI (artificial intelligence) in association with UM practices. We strongly advocate that treatment decisions be made between the patient and their practitioner and to maintain continuity of care (access).
Value Measurements/Health Technology Assessments
We believe patient input, perspectives, and priorities should guide discussions about the "value" of treatments and practices associated with institutional assessments should be curbed.
Biosimilars
As biosimilars enter the marketplace on a broader scale, AiArthritis plans to help our peers through education and fighting for both access and consideration for those who their doctors feel are not candidates for switching.
Drug Affordability Initiatives
As groups such as the Centers for Medicare and Medicaid Services (CMS) and Prescription Drug Affordability Board (PDAB)s emerge in efforts to curb drug costs, AiArthritis will work diligently to include patient voices and ensure access to treatments is uninterrupted.
Transparency/PBMs
We believe in transparency for Pharmacy Benefit Manager (PBM) practices, including associated prescription drugs costs, to ensure patient access to affordable treatment. USA issue
Alternative Funding Programs
As third-party groups create schemes that appear to save therapeutic costs, AiArthritis will remain diligent to protect patients to ensure they are able to access the therapies they are prescribed. USA issue
Copay Accumulator/Maximizers
With the rise of USA insurance copay diversion programs, patients may be at risk of losing coverage for their treatments mid-year. We aim to educate patients about the risks associated and teach those impacted by them to help us change this practice.
340B Program
A USA program meant to help patients connect to more affordable medications, yet it is unclear if patients are getting all the benefits from these programs - profits may be passed through to hospitals & for-profit pharmacies.
Grassroots Program
Knowledge = Empowerment is an online, classroom style, multi-dimensional learning and engagement experience led by people affected by AiArthritis diseases. Through a range of participation options available - patient-led video library, classrooms (webinars) led by patient teachers/discussion guides, FIELD TRIPS, and elevated experiences for those who want to get more involved in public policy (writing letters to and sharing stories with legislators), we have something for everyone!
As a result of this program, we hope to help patients and their loved ones:
- Better understand important healthcare issues that may be affecting their access to therapies;
- Identify if one of these issues are happening to them, then provide tools to address it;
- Feel confident and empowered to share their stories with people making laws that impact their healthcare.
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International Foundation for AiArthritis
6605 Nottingham Ave.
St. Louis, MO 63109-2661
Tax ID: 27-1214308
Toll Free: 1-877-609-4226
Email: info@AiArthritis.org
Copyright 2024. All rights reserved. Information on this site is intended for informational purposes only Our foundation does not engage in the practice of medicine. Please consult a physician to obtain personal healthcare and treatment options. 501(c) 3 Nonprofit Tax ID: 27-1214308.
