Three things are getting in the way of accessing good autoimmune disease treatment: Cost Burden, scarcity of specialists, and lack of patient education.
According to a 2022 National Institute of Environmental Health Science report, autoimmune diseases affect over 24 million people in the US. Perhaps more alarming is that an additional eight million individuals have auto-antibodies, which are biomarkers indicating the chance of developing autoimmune disease now or in the future. In other words, the population needing good autoimmune disease treatment will inevitably grow in the coming years.
Symptoms of autoimmune illnesses can be debilitating when left undiagnosed, or arguably worse, diagnosed but untreated. The impact on quality of life can’t be overstated.
As the basic premise of this website implies, self-care is a necessary component to an overall medical treatment plan: key words being “overall medical treatment plan”. For many living with autoimmune diseases, getting that treatment is not as simple as it sounds to an outside observer.
From the physical effects of the disease itself, to lack of access to medical care and proper treatment, it becomes clear that there is a complex picture of hindrances for patients in getting the help they need.
In this article we’ll touch upon three of the most significant things getting in the way of getting the treatment they need: Cost burden, scarcity of specialists, and lack of patient education. We’ll also discuss how access difficulties impact some patients more than others due to social factors. The scarcity of specialists and cost burden will, for some, certainly be difficult obstacles. But for others, these things are complete barriers to getting care.
The scarcity of specialists and cost burden will, for some, certainly be difficult obstacles. But for others, these things are complete barriers to getting care.
Finally, we’ll talk about possible solutions for patients and practitioners.
Obstacles and Barriers to Healthcare
As it happens, one of the social factors that can impede an individual’s entry into the healthcare system is their disability. For many with autoimmune disorders, limited mobility is a fact of life. That immobility becomes either an obstacle to getting medical treatment – or even worse, a complete barrier to care.
Research by the University of Calgary demonstrated, for example, that Rheumatoid Arthritis (RA) can significantly limit movement in individuals, thereby decreasing their ability to work.
The effect here is twofold: First, they can’t earn a living, so finances are strained. Secondly, getting to and from appointments becomes much more difficult when symptoms are so severe that independence suffers. For those with means, it’s an obstacle – they can find someone to help them into a car and drive them (possibly paying them). For those without the means, they simply can’t get to their appointments – it becomes a barrier.
Cost Burden Affecting Treatment
For those who are able to access treatment, managing their diseases is often very expensive. The cost for many autoimmune disease treatment medications can be upwards of $300, for example. Each. Per month. Most patients require at least one medication.
With many patients living on tight budgets, it’s a common practice to try to stretch that medication as far as possible by taking lower doses, and less often in order to delay prescription refills. Not adhering to the prescribed dosage and frequency can make the disease harder to manage, thus creating more of a vicious cycle. The illness requires more treatment, adherence suffers, and so on.
Lack of Rheumatology Specialists
If and when a patient receives a diagnosis of an autoimmune disease, primary care physicians most often refer out to a rheumatologist. This is often a huge relief for a patient who has gone through the stress of not knowing what was wrong, or worse, being told their symptoms were “in their heads”.
But then, the waiting period to be seen starts. According to a 2016 study, 83% of Canadian patients are seen by the specialist within one year. Wait times for that 83% varied by geographical location and diagnosis, but overall average wait was 74 days for an initial rheumatology appointment. For someone suffering with no treatment, another 74 days can seem like an eternity. What about those other 17% of patients? The data doesn’t even address how long they had to wait beyond that first year.
The long waits, however, can be mitigated with the expansion of telemedicine.
Connecting patients to telemedicine providers for autoimmune disease treatment
Telemedicine for patients with autoimmune illnesses can facilitate better care options. A study on SAGE Journals shows that teleconsultations for autoimmune rheumatic diseases, specifically, have been a great substitute for in-person clinical visits. Many patients have shared that teleconsultations helped them attain a proper diagnosis. Apart from that, teleconsultations allow those who struggle with RA or lupus to avoid feelings of distress due to crowded clinics and long queues.
Providing patient guidance through educational tools
Once the patient is seen by a provider, often a patient will leave the appointment with very little information about the diagnosis and what additional steps they can take to help themselves. This is understandable given the pressures on medical providers to see a patient, give them a plan, and get to the next patient ASAP.
Patients require education on their autoimmune illness so they can cope with its many symptoms and understand that what they’re experiencing is normal for the situation they’re in. Feeling alone in their experiences adds an extra and completely unnecessary layer of distress.
For example, patients with many autoimmune diseases experience a wide range of psychological symptoms including cognitive difficulty, depression, fatigue, and pain. The Global Autoimmune Institute writing on Nature explains that addressing the psychosocial needs of these individuals is an urgent matter.
Global Autoimmune Institute: Addressing the psychosocial needs of these individuals is an urgent matter.Tweet
This can be done by disseminating timely articles on diet and nutrition, both of which can improve coexisting autoimmune conditions and neurological disorders. Notably, the Global Immune Institute provides educational podcasts, books, and apps. These are uniquely tailored tools that can assist autoimmune patients who wish to improve their health.
Disease-specific websites are particularly helpful, as connecting patients with supportive communities.
As anyone with an autoimmune disease will tell you, it’s hard for any patient to fight their battles alone. Being there to support them means you also understand the need for quality care and social connection.
This article was written by Amelia Anthony. Edited by Susan Masterson
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