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Kathleen Torkarski’s young daughter started experiencing pain and swelling in her ankles and feet six years ago. At first, the doctors had no answers.
“We were told she had loose joints because of her celiac disease and that we would just have to get used to lots of sprains and strains. We knew something wasn’t right, and so we just kept fighting to find the right answer. At many points along the way we were told it was anxiety. It was in her head,” Torkarski said. “Finally, she was given the diagnosis, and we immediately joined the fight for a cure.”
Torkarski’s daughter Grace was around 10 when she was diagnosed with a form of arthritis—a term that refers to joint inflammation. There are more than 100 types of arthritis and related conditions. “In the United States, 21.2 % of all adults, or 53.2 million people, have arthritis,” according to the Centers for Disease Control and Prevention (CDC).
The difficulty in obtaining Grace’s diagnosis is one indication that doctors need to be more aware of arthritis. The public also needs to know more about symptoms, risks, treatments, and patients’ needs. Policymakers should be aware that patient access to medicine can be improved through legislation, including pharmacy benefit manager (PBM) reform that is supported by the Biotechnology Innovation Organization (BIO). And drug makers should be aware of the need for innovative alternative treatments.
Every May, Arthritis Awareness Month aims to broaden this understanding and serve as a reminder that there are millions of stories like Grace’s, that help is available, and that action is needed.
“Awareness stands as our strongest ally in the fight against arthritis. It enlightens, empowers, and unites us in our journey to a world where every step is free from pain. During Arthritis Awareness Month, let’s amplify our voices, share our stories, cultivate knowledge of this disease, and advance hand in hand towards an understanding future,” said Steve Taylor, Arthritis Foundation President and CEO.
Types of arthritis
The many forms of arthritis and related conditions include well-known ailments like rheumatoid arthritis—joint inflammation and pain occurring when a person’s immune system mistakenly attacks their body, according to the Arthritis Foundation. The most common kind of arthritis, osteoarthritis, occurs when cartilage breaks down, impacting the underlying bone. It affects more than 32.5 million U.S. adults, according to the CDC.
Lesser-known related conditions, like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), can follow from “immune system problems, like autoimmune forms of arthritis,” the Arthritis Foundation said. And some types of arthritis are associated with inflammatory bowel disease (IDB), including psoriatic arthritis, which can begin in childhood and occurs with the skin condition psoriasis, according to the Arthritis Foundation.
The varieties of childhood arthritis, like the kind that affected Grace, are not well understood by the public, because we tend to think of arthritis as a disease for old people. This poor understanding put Grace in a harrowing position, as Torkarski explained.
After several absences due to her condition, Grace received a truancy notice from her school, Torkarksi said. “My daughter, just 16 at the time, had to go before a family court social worker. She had her Miranda rights read to her and was told, if she didn’t sign, she would have to go before a judge and would therefore have a criminal record. A criminal record. For having an autoimmune disorder that is beyond her control.”
Policy priorities
As a general priority, the Arthritis Foundation said it is “urging recognition of arthritis as an urgent public health priority and supporting robust funding for federal arthritis research.”
More specific arthritis policy priorities include the need to address barriers to prescription drug access from pharmacy benefit managers (PBMs), through copay accumulators, and step therapy.
“Many arthritis patients use co-pay assistance, such as co-pay cards or manufacturer coupons, to pay for their life-saving medications. Pharmacy benefit managers (PBMs) and insurers increasingly use co-pay accumulator programs to prevent such assistance from counting towards patient cost-sharing, such as their deductible or annual out-of-pocket maximum,” the Arthritis Foundation has noted. “Patients may struggle to afford and adhere to their medications as insurers and PBMs seek to shift more cost-sharing responsibility to patients.”
Patient access is also negatively impacted when PBMs and insurers establish step therapy, or “fail first” policies, requiring patients to try a less expensive alternative and to see if it’s effective before they can access the original medicine their doctor prescribed. The Arthritis Foundation supports the Safe Step Act, which would allow for step therapy exceptions.
The Safe Step Act should be incorporated into congressional PBM reform legislation, according to a letter to congressional leaders from 109 patient and provider organizations, including the Arthritis Foundation.
BIO is also prioritizing PBM reform in these and other areas.
Treatments
Another Arthritis Foundation priority for federal policy includes support for research to find new treatments.
There are a broad range of treatments for arthritis, including NSAIDs and analgesics—such as aspirin and ibuprofen—and DMARDs (disease-modifying antirheumatic drugs), which help preserve joints by blocking inflammation, according to the Arthritis Foundation.
Patient advocates would also like to see a drug similar DMARDs to help the 27 million people with osteoarthritis. Research is underway on such disease-modifying osteoarthritis drugs (DMOADs).
One special type of DMARD is biologics, which are targeted to block precise pathways inside immune cells. “Biologic DMARDs are produced by living cells and work on individual immune proteins called cytokines,” the Arthritis Foundation said. But there is a need for alternatives to these drugs, to help patients who don’t react well, including Grace.
“About 9 months ago she developed antibodies to her infusion medication, rendering her unable to take any of the TNF inhibitors that so many find success with,” causing another setback in Grace’s patient journey, Torkarski said. But her daughter’s tenacity and support from others kept Torkarski fighting.
“The Arthritis Foundation and their supporters give me hope,” she said, while also praising “the physical therapists, nurses and doctors who treat patients with empathy and a real commitment to help—and the researchers, who work to find medications that will help or even cure arthritis.”
