Austin, TX. October 26, 2021. In a bright sunlit atrium, on an unusually breezy day, the winds of change blew through a group of individuals just yesterday were strangers. Traveling across the country, these patient advocates entrust their stories with the Infusion Access Foundation (IAF) team as they share their journey of strength, spirit, chronic disease, and treatment gaps. Although IAF technically launched a year ago, most will remember this as the day IAF’s vision materialized.
To understand the origin of the Infusion Access Foundation, it is necessary to begin 10 years ago with the inception of the National Infusion Center Association (NICA). As a non-profit dedicated to improving access to provider-administered medications, NICA’s team of experts and advocates worked together to support more efficient and cost-effective alternatives to hospital care settings for infusion treatments.
It quickly grew apparent patients needed a dedicated support community to share their stories to amplify their collective voice and collaboratively drive change. While infusion providers required a separate organization to champion their trade and professional interests so they could continue providing high-quality care to their patients in a safe environment. Thus, the Infusion Access Foundation (IAF), as a patient-focused public charity, was born.
Chronic disease pain is only the tip of the iceberg for these patients. For many, these stories begin far before diagnosis, and their battles continue indefinitely. In fact, the journey to diagnosis for many autoimmune disease patients takes 5-10 years, or more. During this time patients experience pain, frustration, self-doubt, and massive medical bills.
Furthermore, although most people understand living with chronic pain must be extremely challenging, the reality for many chronic disease patients is that when their pain is invisible, it is implicitly easy for others to ignore. Regina, recent masters graduate, busy mother, and multiple sclerosis (MS) patient explains, “You don’t have to look sick to be sick.”
Therefore, like the disease itself, the camouflaged policies impacting treatments for these diseases are likewise – invisible. Policies masquerading as beneficial, such as “step therapy,” and “utilization management” slip past the public eye without second thought. However, for these patients, living with chronic disease means grappling with trauma. Not just from the pain, but to feel powerless over your health outcomes when treatment is available, is one of the most infuriating experiences a patient might go through.
So what do we do? Any person living with chronic disease understands the trauma of loss and disempowerment. Therefore, we put the power and voice back where it belongs – in the patients’ hands. We create a safe and supportive platform to amplify the collaborative voice of these patient advocates because “alone (we) are the underdog, but together we topple Goliath,” as patient advocate, Jarrad Berman proudly proclaims.
Jarrad, an outspoken, loyal husband and father from New York, uses the unjust barriers he faces to fight for others. After maintaining a stable treatment protocol for over a decade, he was switched from his Crohn’s disease medication. Not by his doctor, not by the FDA, and not by his own choice – but by his insurer.
I was furious to discover with only seven days’ notice that I was being forced into a different treatment plan for reasons unrelated to my health or safety, and there was nothing I could do about it. I have not yet had any luck fighting back against what I believe to be the wrong decision for my health and Crohn’s treatment journey. Even though I am a well-educated and capable person who has experience pushing back against industry professionals and having tough conversations, the health insurance industry has proven to be a wall I cannot climb alone.
It disheartens me to think of all the other infusion patients in this country who do not have the education, the ability, or even the energy to protest or appeal unjust decisions that undermine their health for the sake of increasing health insurance profits. I am tired of being manipulated by my health insurance provider, but I will not give up and I will continue to fight for my treatment in the hopes that it will one day allow other patients to gain access to their prescribed medications that help them stay healthy. (Berman, Jarrad)
When Regina’s medications were switched without the approval of her or her doctor, she reached out to the IAF team for help. After some speedy advocacy work and letter writing, Regina’s insurance company allowed her to stay on her prescribed medication. In fact, the IAF team even uncovered that her insurance was not in compliance with the state’s nonmedical switching policy for biosimilars. Regina believes, “Consistency is key! Fight for your health like your life depends on it!!” (because it can ).
However, treatment gaps are not the only thread weaving this community of champions together. Compassionate patient advocates – sisters, Estela and Juana, founded Looms 4 Lupus after Juana was diagnosed with lupus and Estela with fibromyalgia. The sisters “knit” a community of hope, providing an outlet for therapeutic relief through mindfulness and creation. Juana and Estela flip the script by explaining, “We are the CEOs of our bodies. We know when something isn’t right.”
Likewise, vibrant Amanda uses her MS treatment journey to inspire her community to never give up and live their best life. When Amanda walks into a room, one cannot help but hope, like glitter, a little bit of her sparkle will rub off on you. Amanda confidently proclaims, “I wear MS well.”
With each story the IAF community discovers an important truth. Our interwoven strength can fix the loose thread barriers to treatment threatens to unravel. When we work together to tighten this thread, we stitch a network of support much stronger than ever before.