AiArthritis logo showing stylized infinite loop symbol in red with black dots, above organization name for International Foundation for Autoimmune & Autoinflammatory Arthritis.

"We don't represent the patient voice, we are the patient voice."

AiArthritis is an organization founded by people living with Autoimmune Arthritis and Autoinflammatory Arthritis (AiArthritis) diseases, and all our staffed and volunteer leaders are also impacted. In addition to having the ability to bridge lived experience with patient organization expertise, we excel in designing and implementing creative, peer-led education, guidance, and resources.


Traditionally, coalition members are not patient community members, they are representatives of patient organizations and other similar groups. But AiArthritis has realized with this new era of patient engagement - where ALL patients, not only those currently considered advocates, are being asked to share their perpectives - a PATIENT VOICE coalition is necessary. 


The Patient Inclusion Council (PIC) coalition aims to empower patients to advocate for their own care needs through a long-term recruitment, education, and advocacy program. Membership is open to anyone but will most benefit individuals with one or more chronic conditions that are managed through prescribed treatments or doctor administered therapies (not only AiArthritis diseases). We encourage caregivers of these individuals to also join.



If you are on an expensive treatment to manage your disease (or someone you love is), and are in the United States, please join the PIC today!

Interested in Joining? Complete this Form!

Drug Price Reviews: What is this all about?


There are new government efforts in the United States - both nationally, like through the Centers for Medicare and Medicaid Services (CMS), and at the state level - to address drug costs by conducting reviews to determine if they are too expensive for patients and the healthcare system. At the state level, these are done by Prescription Drug Affordability Boards (PDABs). At CMS, it is done as part of the Inflation Reduction Act (IRA).


AiArthritis is led by people living with the diseases we represent, so we understand the importance for affordable and accessible treatments. While we support lower drug costs, we are concerned how governments are going about addressing this issue. Several states have already started the drug price review process, but not one is going about it the same way - including how they consider the perspectives and needs of patients. We need to be "at the table" so the government hears from us directly about affordability and access issues (which often is the result of insurance company/Medicare plans and protocol limitations) and so they understand the importance to ensure we do not lose access to the treatments that work best as a result of their reviews.



  • What is a Prescription Drug Affordability Board (PDAB)?

    These are government appointed boards who are tasked with developing and overseeing a complex process to identify the most expensive drugs in the state and then conduct reviews to determine their affordability to patients and the healthcare system. 



  • What is the process the PDAB follows?

    Since these reviews only started at the end of 2023, no two states have designed the same process for reviewing drug affordability, including the inclusion of patient/caregiver testimony. 


    Partly as a result of rushing, AiArthritis and other organizations have identified issues with the way they are collecting data that will result in faulty information. For example, one question we have seen on patient/caregiver  surveys is: "Have you ever skipped a dose or stretched out a dose of your medication due to affordability issues?" For many, yes, we have stretched out a dose or skipped a dose, but the reason is the insurance company forced prior authorization or step therapy - not because we could not afford the drug (if on a manufacturer assistance plan). 


    It is vital patients/caregivers weigh in so it's clear IF we have affordability issues WHY that is, as well as any concerns about their actions to address affordability once a decision is made (i.e., ensure we do not lose access to our medications).

  • What is the CMS/IRA drug review?

    Similar to the PDABs, CMS - through the government initiated Inflation Reduction Act (IRA) - in 2023 they were tasked with identifying the 10 most expensive Medicare Part D drugs. Pending their review, CMS will have the authority to cap the drug price if determined to be too expensive. 


    While this sounds wonderful, there are some concerns, including 1) how will this impact our access to treatments, including the potential those doing well on a treatment will be forced off of it and 2) how will this impact the future of new drugs?

  • Why should I care?

    1. Since these processes are new, and both CMS and states with PDABs are figuring out how to do these as they go:

    • The process is often very rushed and not well thought through
    • The way patients/caregiver testimony is being collected and used is questionable
    • True affordability issues (like if it's due to insurance companies) may not be included in their investigations

    Thankfully, CMS and many of the state PDABs are willing to listen to patients/caregivers - including to our advice about the processes they are designing. So this is one reason patients/caregivers should care about getting involved in our coalition - the more experiences around affordability and access we capture, the better the outcomes of these drug reviews.


    2. We simply do not know how the results of these reviews will impact our access to existing or new treatments.



Addressing the high costs of prescription drugs is important. But the way the government is going about it is very concerning to patients and caregivers.


High priced drugs - like those used to treat AiArthritis and other chronic diseases - are under review, largely to determine if patients and the healthcare system can afford them. If it's determined these drugs are not affordable, actions may be taken to try and reduce the costs. This sounds like a great plan, but we have concerns about the process and possible unintended consequences.



It is critical that government officials hear directly from patients about: 


The drugs they need to maintain their help

The next drugs they will turn to if/when their current treatment stops working

Their current costs and assistance received through coupon or rebate programs

The impact effective treatments have on their daily lives

Patients & Caregivers - Make Your Story Count: Join the Patient Inclusion Council

Mission of the Patient Inclusion Council (PIC):  The PIC aims to empower patients to advocate for their own care needs through a long-term recruitment, education, and advocacy program. 


By joining the PIC, patients and caregivers will have access to education programming led by fellow patients. Members will have access to online classes about how regulations impact their care, how to reach out to policymakers, and more. Additionally, online resources will include a video and document library. 


The curriculum will equip patients and caregivers with the tools and confidence they need to share their stories directly with policymakers through meetings and testimony, provide regulators with critical feedback on patient perspectives and priorities, and evaluate patient focused materials for effectiveness. 


Membership is open to anyone but will most benefit individuals with one or more chronic conditions that are managed through prescribed treatments or doctor administered therapies. We encourage caregivers of these individuals to also join. 

Interested in joining? Complete this form!
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