For-e-ver: The long and winding road to effective care

by Emil DeAndreis

The term “chronic” brings to mind the scene from The Sandlot, when nerdy Squints repeats with theatrical slowness: “For-e-ver. For-e-ver.” There is such weight to the permanence of autoimmune illness. It can be disorienting, even claustrophobic, especially upon first diagnosis. 

At the same time, our worst anguish can come before the diagnosis, when for months or years we writhe in unknown discomfort. A diagnosis can represent clarity, and hope, but it’s not always that easy. The process can take months, years, and in some cases, decades. But why? And once we are diagnosed, why is successful treatment yet another riddle?

Unclear symptoms and fragmented treatment  

Many factors can contribute to the delay in diagnosis. One reason is the symptoms that present are not immediately linked to autoimmune activity, which can lead to misdiagnoses and unsuccessful referrals to symptom-specific specialists. People with skin problems are referred to dermatologists and receive a cream. Back problems lead to chiropractors, physical therapists, acupuncture, and muscle relaxers. This superficial approach, treating symptoms only, can go on for months or even years. Meanwhile, the root condition remains wholly unaddressed. It solidifies, it blooms, it worsens. 

My personal experience followed this pattern. When I went to my general practitioner with swollen joints, I was referred to a sports doctor. Why? Because I was a 22-year-old professional baseball player. My sports doctor thought: “How could he have RA, a disease that often targets older women?” I underwent months of cortisone shots before I was referred to a rheumatologist. 

The thing is, our conditions don’t always fit into one diagnosis. They can often become multisystem diseases. Since my diagnosis, my RA has branched out, so to speak. I’ve had red and dry eyes, and when I bring it up as possibly RA-affiliated, I’m met with an eye drop prescription. I’ve had alopecia areata, as well as eczema, and for each case I’m given ointments, shampoos, injections.

The symptoms are treated as singular, unrelated. Doctors don’t seem to be interested in discussing the possibility of their interconnectivity or that there could be a comprehensive treatment. Perhaps others can relate to this runaround experience and can agree that it would be helpful to have elevated autoimmune awareness, as well as more communication and collaboration across medical fields. This would open up the possibility of an effective autoimmune drug being prescribed more quickly, rather than critical months or years passing by, seeing different and disconnected specialists, before a diagnosis is reached and treatment is established.

Atul Deodhar, MD, MRCP, a rheumatologist and professor of medicine at Oregon Health and Science University, says that a condition called central sensitization—increased responsiveness in the central nervous system, which results in hypersensitivity—can further complicate an autoimmune condition. 

“What this means is our pain is not just related to immune system dysfunction,” says Deodhar. “If I pinch you, it hurts, but it is not because of the trauma but because you’ve stimulated a nerve that the brain tells you is painful. In the case of autoimmune conditions, your immune system sensitizes your nervous system such that everything is perceived as pain. And often when patients come to me, this is already established in their body, at which point suppressing the immune system will help some of the inflammation. But it will not effectively erase the pain.”

The battle to afford treatment

Insurance companies also play a role in the complications of autoimmune treatment, when they should be patients’ allies. 

According to Deodhar, scientific research has gotten us closer to being able to “determine what drugs could be most effective for a specific patient based on their phenotype. But our hands are tied by insurance companies. For example, I may think [I know] the correct drug for you based on your activity, your tests, looking at your phenotype. But the insurance company says, ‘No. Try [this biologic] and [this immunosuppressant] first, not [the prescribed biologic].’ It is a financial incentive for them, and I cannot fight them every time.” 

This practice of forcing patients to fail on cheaper drugs first is commonly known as step therapy or “fail first.” People with autoimmune conditions are more likely to be subjected to it, as specialty autoimmune medications tend to be costly. It’s one of only several cost-savings strategies insurers employ—leaving patients needlessly floundering, hoping the drug they’ve been instructed to try by their insurer, not their clinician, might still work.

Even if science advances us to the possibility of individualized treatment, as Deodhar hopes, will insurers allow it to be affordable? That seems uncertain. With or without good insurance coverage, health care remains incredibly expensive. You might identify the right treatment for your condition only to find you simply cannot afford it. 

Added challenges for BIPOC

In a country where health care access and quality is demonstrably lower for members of Black and brown communities, it is no surprise that these inequalities permeate the autoimmune world.

For some conditions, such as lupus, BIPOC (Black, Indigenous, people of color) and lower-socioeconomic populations are at higher risk. A study in 2009 found that out of 100,000 women, 210 Black women and 138 Hispanic women had lupus versus 68 white women. Like many autoimmune conditions, the variety of symptoms can lead to many misdiagnoses, and crucial years can pass before a correct diagnosis. This, along with language barriers and some populations’ wariness toward the health care system, encompasses some of the obstacles standing in the way of effective treatment. 

Despite the prominence of lupus in BIPOC communities, a study in 2012 revealed that 74% of Hispanics and 50% of African Americans knew little or nothing about it, meaning those populations most vulnerable to these conditions are least equipped with the knowledge and resources to manage them. 

Melodie Narain-Blackwell, founder of Color of Crohn’s and Chronic Illness (COCCI)—a nonprofit organization designed to improve the quality of life for BIPOC who are affected by irritable bowel disease (IBD), digestive disorders, and associated chronic illnesses—notes other systemic factors interfering with proper treatment.

“I’ve talked to several Black doctors who studied at different schools who were told not to study IBD [ulcerative colitis and Crohn’s disease] because ‘Black people don’t get those diseases,’ despite studies from Howard University in the ’50s and ’60s and ’70s showing Black patients with clear symptoms of Crohn’s,” Narain-Blackwell says. 

“For the longest time, Black culture did not know about IBD and Crohn’s because they were being labeled ‘white’ diseases, so we were disqualified from the knowledge of the diseases and were therefore disqualified from the disease space,” she adds. “They were told, ‘Here, take a couple Motrin, take some Tums, and you’ll be fine.’ Meanwhile, people keep deteriorating until eventually they are intimidated and hopeless, not to mention wholly put off by the health care system and their experience.”

She adds that even today, media depictions of people with IBD rarely show BIPOC, furthering the idea that its challenges and treatments are not for them.

Despite taking advocacy into her own hands with the founding of COCCI, Narain-Blackwell is rightfully wary of statistics that imply growth in acknowledgement and awareness of these issues:

“I’ve heard the statistic that Crohn’s has risen at the rate of 141% in the Black community. No, my dear, it’s on the notice now.”

The long road

The obstacles are complex and varied. But they don’t have to be. I’d like to imagine a world where someday, autoimmune conditions are challenging only in the inherent pain and symptoms they cause—not the barriers we add on top of them, like fragmented care, high costs, and unequal treatment.    •