Advocacy & Public Policy
Protecting Patients, Not Programs: Why 340B Reform Matters for Autoimmune Care
January 15th, 2025
AiArthritis commissioned Milliman to explore hospital transparency data related to autoimmune disease drug spending. We want to make sure that hospitals who get big discounts under a federal US program called 340B pass their savings to patients - the intended recipient. Read more and download the report!
Nuestro papel en la defensa de los derechos
- 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.
¡Póngase en contacto con su legislador (actualmente en EE. UU.) o envíe su historia a AiArthritis y nos aseguraremos de que su historia sea escuchada!
Our Advocacy Staff
"We don't represent the patient voice, we are the patient voice."
Las siguientes personas desempeñan un papel clave en la gestión de nuestro departamento de políticas públicas en AiArtritis.
Mark Hobraczk, JD, MPA
Director of Public Policy
Person living with Ankylosing Spondylitis
Ray Patnaude
Project Manager - Advocacy
Person living with Psoriatic Arthritis
AiAdvocates
AiAdvocates are volunteer leaders within our organization who participate in different levels of engagement to increase patient voices in public policy. Interested in being an AiAdvocate? Sign up as a volunteer today!
Policy Priorities for 2026
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
Un programa estadounidense destinado a ayudar a los pacientes a acceder a medicamentos más asequibles, pero no está claro si los pacientes están obteniendo todos los beneficios de estos programas; es posible que las ganancias se transfieran a hospitales y farmacias con fines de lucro.
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.
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. Also included: International Pricing Reference, Drug Importation
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.
Access to Public Healthcare Plans
In the USA, several changes to the healthcare system are happening and we must ensure access to public healthcare plans is preserved (i.e, ACA/Medicare/Medicaid)
Research Advocacy
We have launched 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.
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.