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May is Arthritis Awareness Month, and in observance, Bio.News asked AiArthritis to discuss how it is advancing the needs of patients with autoimmune and autoinflammatory arthritis diseases across the United States.
Globally, there are 450 million people living with one of the over 100 diseases classified as autoimmune and autoinflammatory arthritis. These diseases affect a wide diversity of people across different age groups and can manifest in a variety of ways—in fact, as many as half of all impacted patients may go undiagnosed or misdiagnosed.
The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) is working to change that. Driven by patient-identified issues and patient-infused solutions, their mission is to advance education, advocacy, and research of autoinflammatory diseases through peer-led guidance and collaboration.
“We don’t represent the patient voice. We are the patient voice,” states AiArthritis. “It takes the voice of lived experience to identify what is missing in current efforts to improve patient lives.”
Real patients, not stereotypes
AiArthritis was born of President Tiffany Westrich-Robertson’s experience navigating her own arthritis diagnosis.
In 2009, she started suffering from widespread and debilitating pain in her chest, foot, and hand, as well as fatigue and low-grade fevers. These symptoms soon spread to her tailbone area and other joints in the left side of her body. But her blood tests and X-rays were normal, so her condition was mostly dismissed as stress or unexplained injuries.
This is sadly not an uncommon story, especially for women and patients from historically underserved communities, whose pain is more likely to be dismissed by healthcare providers. Westrich-Robertson’s first rheumatologist chose a wait-and-see approach to treatment, resulting in her pain spreading, her fatigue increasing, and her fevers persisting—until she went for a second opinion.
The new rheumatologist gave the initial rheumatoid arthritis diagnosis, even without the presence of positive blood markers, and prescribed her first-line disease-modifying agents. Within days, her fever broke, she was back to a normal sleep schedule, and the pain had diminished significantly. However, due to the delay in treatment, a magnetic resonance image (MRI) of the left wrist showed inflammatory damage.
As an energetic VP of Business Development and Project Management of an architectural firm, Westrich-Robertson did not fit the arthritis patient stereotype—and she is by no means alone.
Autoimmune and autoinflammatory arthritis diseases are complex, and often difficult to diagnose and treat. As AiArthritis explains, “There are over 100 autoimmune and autoinflammatory diseases, originating from different parts of the immune system. However, only a fraction of these diseases present inflammation-driven arthritis as a clinical symptom in most patients.”
“Patients were the ones who made this realization,” Westrich-Robertson explains. “Based on hundreds of us connecting online and discussing, we realized we all shared the same ‘auto’ and inflammatory arthritis symptoms, regardless of diagnosis. It was this ah-ha moment that resulted in our forming the first and only nonprofit focusing on this group of diseases.”
This disease group can include rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis, Lupus, and many other conditions.
Policies that put patients’ health in peril
As AiArthritis explains, while patients are navigating debilitating conditions that are difficult to treat, they are often simultaneously faced with fighting a complicated and fragmented healthcare system that, at times, delays or denies the care patients need.
These delays are jeopardizing patients’ health. The autoimmune and autoinflammatory arthritis diseases AiArthritis advocates for, when left untreated, often result in irreversible damage to the body. This can range from inflammatory joint damage and limited mobility to complications in organs, like the heart and lungs, and the nervous system.
One example of these dangerous policies is utilization management, an umbrella term referring to “cost containment” tools used by health insurers that often result in delayed care and care interventions that are not driven by medical reasoning. Within this policy are a number of different tools that insurers use to delay care so they can save money.
Prior authorization is one such tool; it requires physicians to obtain approval for a prescription from the insurance company before they agree to cover the prescribed drug. This can lead to lengthy delays in care that harm patients. In some cases, insurance companies have even used artificial intelligence to make care determinations and overwrite the insights of the treating physician—resulting in a high number of inappropriate denials of prior authorization.
Step therapy, or “fail first” practices, is another mechanism for utilization management. It requires patients try one or more cheaper, potentially ineffective alternative medications before insurers provide access to the drug actually prescribed by the healthcare provider. In some cases, insurers or their pharmacy benefit managers (PBMs) actually require patients who are stable on their current medication to switch to a different, cheaper, alternative, regardless of effectiveness or the patient’s needs, among other issues. This is called non-medical switching and can have detrimental impacts on patients’ health in the short and long term.
And as Westrich-Robertson notes, utilization management issues are getting worse for patients, not better. As such, the need for a patient perspective remains as important as ever.
What good patient engagement looks like
“It is the patient and caregiver experiences that will bring issues and complexities into focus,” Westrich-Robertson said in February during a monthly coffee chat hosted by the Biotechnology Innovation Organization (BIO).
And nowhere is that more true than when addressing the issue of Prescription Drug Affordability Boards (PDABs). These boards, which vary from state to state, are state bodies that aim to cap, control, and dictate the price of drugs that manufacturers can charge. Yet, as AiArthritis and other organizations have found, the PDAB goal of bringing down the price of medicines for patients doesn’t translate, and instead may create barriers to access.
PDABs often argue that they listen to patients and ask for their feedback. Yet, when AiArthritis looked into the patient-facing survey the PDABs were offering, they realized they lacked the ability to collect any meaningful context behind patient experiences with obstacles or successes related to prescription drug affordability.
“They hadn’t thought about the questions they were asking patients regarding affordability,” Westrich-Robertson said during a panel at the 2024 BIO Convention. “It was almost like the PDABs were just ticking a box when it came to getting patients involved.”
“It is extremely challenging for a patient to respond to a question that isn’t worded correctly,” she added.
In response, AiArthritis expanded their work to lead a national, disease-agnostic, two-part coalition that addresses these new government drug affordability reviews. The Ensuring Access through Collaborative Health (EACH) (the part of the coalition for patient organizations and allied groups), and the novel Patient Inclusion Council (PIC) (the part of the coalition for patient and caregiver members), operate both together and separately to advocate for drug affordability policies that benefit patients.
The PIC side of the coalition, for example, is launching a patient-driven, patient data experience project to ensure the right information is collected to reflect the reality of affordability and access to medication and treatments. This initiative includes a robust, detailed survey, as well as opportunities for patients to submit their stories through peer-to-peer conversations and form submission.
It is important for the coalition partners to work independently, as well as in tandem, because, as Westrich-Robertson explained at the BIO 2024 Patient and Health Advocacy Summit, no two PDABs are the same. From state to state, each PDAB has profoundly different methods of operation, creating further opacity for patients navigating healthcare access.
“These different states have different processes, different ways patients can be engaged, for example, different ways they choose their drug lists,” noted Tiffany Westrich-Robertson, Chief Executive Officer and Co-Founder at AiArthritis. “It is a free-for-all. It also makes it very complex and confusing, especially for patients who want to get involved.”
AiArthritis’ patient perspective led advocacy work not only spotlights missteps in healthcare policy, it also provides policy makers the opportunity to change course.
Patients first and foremost
When it comes to healthcare, advocacy, organizations like AiArthritis remind us that there is one thing that is most important and should guide everything: patient need. And for patients with autoimmune and autoinflammatory arthritis diseases, the risk of disability from delayed care is front of mind.
“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,” the organization writes. “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. Then we ideate innovative, patient-infused (pun intended) solutions to impact change.”
And with better access and improved treatments, patients can begin to hope for a better, healthier future in the years to come.
