Our Role in Advocacy

We impact policy and legislation through personal patient experiences, collaborative support, and research advocacy.  Our CEO, Advocacy Program Lead, volunteer program policy lead, and several volunteers have years of experience in public policy. We are experienced in communicating with legislators and regulatory officials, writing letters, and peer-to-peer mentoring and education.

Respected Professionals.  As an organization, we work to influence policy in the US and abroad primarily by speaking on behalf of fellow patients and by joining forces with other stakeholders  to advance key legislative efforts.  However, in 2015, our CEO consulted with bioethicists and a public policy advisor to author the Ethic of Step Therapy white paper, which concluded that while insurers have an ethical obligation to recommend the use of the lowest-cost therapy before approval of a higher-cost prescription, forcing use of preferred drugs is biased towards patients who meet general patient population standards and does not account for patients who present atypical or have co-morbidities. The "atypical" patient ethical argument has since been used by other organizations to influence policy. This ethics investigation launched our involvement in precision medicine (since 2015 - so pioneers, well before anyone else in our community had biomarkers on their radar), and has resulted in the launch of our AiArthritis Research Database (data to drive policy/Research Advocacy).

Cross Category Initiatives.  While we focus on improving Education, Advocacy, and Research, often our work overlaps between these pillars - as one often influences the other. Our Managers in these three areas work together to craft our message and speak on behalf of fellow patients and educate patients/care partners to speak, too.

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.

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.

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.

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.

Copay Accumulator/Maximizers

With the rise of 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.

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.

Featured Projects

Our work is based on conversations, problem-solving, and action. Our voices drive what we do - not only as a story to enhance our work, but also as the reason why we choose our initiatives and how we accomplish our goals.