The Autoimmune Patient Journey (Part 2)
A Deeper Dive into the Loops

Many Convoluted Stages Along AIID Patient Journeys

The convoluted journey of patients with autoimmune and inflammatory diseases (AIIDs) has many stages. Each stage presents challenges that may cause patients to drop out before they get the care they need. Unlike cancer, diabetes, and heart disease, there are no population screening nor public health education programs for AIIDs, blocking the path to early diagnosis and preventative care. Moreover, most at-risk people are unaware of their genetics or relevant family history. Few people know that any autoimmune disease in close family members is a risk factor for all autoimmune diseases. Therefore, most people do not mention AIIDs in family histories, nor do intake forms routinely ask about family autoimmune. Other risk factors, such as obesity or poor oral health, are often overlooked. Trigger events, like infections, often precede the first symptoms, but usually go unnoticed by patients at the time. There are so many evolving pieces that contribute to an autoimmune diagnosis. These pieces can be difficult for the patient (or PCP) to connect, since symptoms may not emerge until months or years later.

To see patient journey examples and learn more about the lack of patient voices in autoimmune care, see part 1 of this blog series.

Frustrating Handoffs Between PCPs and Various Specialists

Early symptoms include fatigue, fever, aches, and rashes, as well as brain fog, anxiety & depression. As these vague symptoms fluctuate & worsen, people eventually seek help from their primary medical providers. However, scheduling an initial conventional care visit can be long delayed, especially if symptoms are not specific or alarming. Some patients resort to online research, alternative therapies, or lifestyle changes in parallel with or instead of pursuing conventional care.

During primary care visits, symptoms like fatigue, aches, or anxiety may not raise suspicion of AIIDs. This means PCPs do not order tests or conduct further investigations. Even if tested, negative lab results can support the belief that there is no physical disease. Providers too often refer patients, especially women, minorities, and people with anxious or depressed affect, to mental health care, leaving patients feeling gaslit.

Zoom in on the PCP-to-specialist referral loop in the autoimmune patient journey. This is one of the most frustrating loops for patients if they are sent to the wrong specialists or feel they are not being heard. This may go on for years, involving fruitless visits with multiple physicians.

The Specialist Diagnosis Loop

Depending on presenting symptoms and test results, the journey continues with referrals to any of a number of specialists. For example, PCPs may refer patients with musculoskeletal symptoms (and negative labs) to orthopedists or physical therapists, rather than rheumatologists. Likewise, patients with motor control or skin symptoms should prompt referrals to neurologists or dermatologists but often do not. Better would be a fast referral to a rheumatologist (the specialists who see the most AIIDs) for a diagnostic workup, followed by referrals to other specialists. However, securing a rheumatology appointment can take weeks or months. This is particularly true in rural areas; some patients cannot access a rheumatologist at all! Moreover, patients usually have to coordinate scheduling themselves, usually by phone and rarely online. Patients also bear the costs and stress of travel, childcare, and time off work.

Once they get to an appropriate specialist, patients usually undergo physical examinations. Often they must repeat their medical histories if EHR data is not shared between practices or providers. Specialists order diagnostic tests such as blood tests & imaging. This process can take weeks to months as patients secure appointments and travel to labs. Unfortunately, there are too few sensitive and specific tests, so results may be inconclusive. Even worse, the physical stress of procedures can trigger symptom flares. Once results are in, specialists strive to interpret often unclear labs and may wait for clearer indicators to emerge. Eventually, perhaps after years of bouncing from primary to various specialists, the patient receives a specific diagnosis. 

Expensive Pharmaceutical Interventions

Based on the diagnosis, specialists create initial treatment plans. There are a wide variety of treatment options. There are more than 100 drugs available for conditions like rheumatoid arthritis (RA). These include inexpensive nonsteroidal anti-inflammatory drugs (NSAIDs) and immunosuppressants. Or, they may be costly specialty medications, like biologic disease-modifying antirheumatic drugs (bDMARDs). Specialty drugs comprise only 2.5% of drug usage in the US but over 52% of pharmacy spend. Despite these high costs, more than 65% of autoimmune patients have an inadequate response to drug therapies.

However, with few sensitive/specific biomarkers, drug choice usually relies on specialist experience, clinical judgment, or trial and error. Worse, practices often must navigate payer constraints such as formularies, prior authorizations, and step therapy. This limits treatment options, further delaying care, adding to cost (or pushing it from payer to patient), and frustration. Once patients receive their first prescription, they fill it at a pharmacy or schedule procedures at infusion centers, presenting more scheduling challenges and delays. Hospital infusion centers tend to be significantly more expensive than independent ones, further adding costs.

If the cost of a drug co-pay is too high, some patients may never fill their prescriptions at all. Even if they do, if patients experience side effects, they may become frustrated and discontinue treatment. If patients don’t feel better, they may choose to stop or not renew their prescriptions, often worsening symptoms. Unfortunately, healthcare providers rarely utilize genomics at any point in the patient journey. This is one of many reasons for so little personalization in the treatment of these highly personal diseases.

Finding Long-Term Relief

Medical practitioners often overlook the quality of life limitations that chronic pain, fatigue, and brain fog produce in AIID patients. Moreover, providers usually do not recognize the stress associated with diagnostic procedures, which can trigger exacerbations (flares) of symptoms. Symptoms may persist even when patients are on medications; there is little effort to predict flares or suggest lifestyle changes that could prevent them. When patients flare, they usually reach out to their rheumatologists, who often prescribe breakthrough drugs like steroids. However, obtaining such visits and filling prescriptions are also sources of friction and delays. Specialists should consider adjusting dosing or changing drugs based on patient response (disease progression or remission and side effects), but this step is often neglected.

At any point, AIID patients may discover lifestyle interventions with the help of online resources, patient groups, or even providers. They may also need mental health support, such as psychological therapy, mood management, smoking cessation, or sleep improvement. Cognitive-behavioral therapy (CBT) is a particularly helpful behavior change approach, but not enough patients get such referrals. Exercise, movement therapy, physical therapy, and other self-directed measures are often self-financed. Patients may explore dietary modifications, nutrition, supplements, and trigger identification through online information or virtual care platforms, such as Mymee.


The broken process of detecting and diagnosing AIIDS, particularly referring patients to the right specialists, leaves many untreated for years as the disease progresses. The lack of sensitive and specific biomarkers hampers diagnosis and drug choice. Treatment decisions often rely on trial and error, further constrained by payers. Managing autoimmune diseases within a siloed medical system is convoluted, contradictory, and confusing for patients. This adds frustration and a sense of hopelessness on top of disease symptoms.

Authors: DrBonnie360, Ellen M Martin, & Ellie Duvall

We approach these thought leadership posts from our multi-lens perspectives

  • DrBonnie360: Digital health consultant, clinical dentist, Wall Street analyst, patient & advocate.  
  • Ellen M Martin: Consultant, editor, life science finance/IR/marcomm, autoimmune caretaker.
  • Ellie Duvall: Digital health equity research intern, Physiological Sciences Undergraduate Student at UCLA.

Strategic Consulting & Professional Services

We provide professional consulting services to investment, emerging, and established companies. Our work bridges silos and fills gaps to help our clients improve care for AIID patients and reduce costs. Informed by patient and caretaker perspectives, we urge investors & clients to integrate the best of digital, conventional, and lifestyle medicine into AIID care delivery.

  • We help our clients leverage digital innovations into V1C for AIID patients. 
  • Our subject matter expertise includes: Oral health, microbiome, autoimmune patient journeys, competitive landscape analysis, strategic positioning & messaging, digital health, and self-hacking.
  • We have decades of experience in finance, marketing, and communications for dozens of healthcare and life sciences organizations, emerging and established.
  • Our backgrounds include clinical dentistry, osteology, biotech IR/PR, marcomm, content creation, strategic consulting, and autoimmune advocacy.

Contact us to help you map your market landscape and understand patients’ unmet needs. Also, we can help you clarify and articulate your company’s market position and differentiators. Long before COVID-19, we were facilitating virtual sessions. We also create compelling content: Articles, blog posts, collateral, e-books, web copy, and white papers. Our Autoimmune Connect/DrBonnie360 website showcases our own content.


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