Autoimmune diseases affect more than 23.5 million Americans, according to the National Institutes of Health. The prevalence of some of the most common autoimmune and inflammatory disorders, such as rheumatoid arthritis, Hashimoto’s, type 1 diabetes, lupus, multiple sclerosis, Crohn’s, and Sjogren’s, is predicted to increase.
The symptoms of autoimmune disorders can be debilitating and make it difficult, if not impossible, to perform everyday tasks. I’ve seen this first-hand; my own partner has been in and out of hospitals his entire life due to Crohn’s disease. Today, he’s able to manage his condition and has even become a successful social worker—all thanks to biologic therapy.
He’s not alone. The rise in biologics prescriptions over the past few years has resulted in a dramatic increase in quality of life for thousands of patients worldwide, but can the pharma companies creating these treatments do more to help patients.
Are biologics manufacturers doing enough to help immunosuppressed patients cope with the emotional challenges of treatment?
Biologics manufacturers have learned and attempted to address what patients need most when they are considering a biologic therapy—transitioning from a non-biologic treatment; getting started with a specialty pharmacy; getting improved financial access to treatment; joining support programs for staying compliant with dosing; and, even traveling with treatment if the patient self-administers.
While all of these support systems are crucial in assisting patients to get on and stay on a biologic therapy for maximum effectiveness against their disease, they are all focused on the drug itself. What’s less addressed, however, are the personal stresses and social implications that affect how patients navigate their lives and interact with their communities.
For example, a biologic can give you the ability to do something as simple as go grocery shopping and walk around the store without pain, discomfort, fatigue—but it can also make you fearful of the germs on the shopping cart, of the person coughing next to you in line.
It’s intimidating to explain to a co-worker that “swinging by” your desk with the sniffles could be potentially dangerous for you, because you’re on a biologic. There’s social anxiety around having to ask close friends and family if they’ve washed their hands before interacting with you. There’s pressure and worry about not wanting to be perceived as a hypochondriac.
All this adds up to a lower quality of life for many immunosuppressed patients that physicians and biologics manufacturers may not be aware of, much less understand.
Patients may be missing out on life (avoiding concerts, parties, crowds, malls, etc.) as a result of not fully understanding the status of their immune system. They need to understand which measures they should absolutely be taking as a precaution, as well as which ones are unnecessary. Their fear of getting an infection may affect their quality of life, but do patients realize this is something to bring up at their next doctor’s appointment?
In what ways can biologics manufacturers help patients get ahead of emotional side effects, while directing responsibility to the physician and healthcare team?
The “higher risk of infection” is certainly included on biologics manufacturers’ websites and package inserts, but it’s listed along with other side effects under important safety information as a necessary legality. Patients need help getting past the list of symptoms to communicate to their doctor should they occur, and instead need to be empowered to learn how to get in front of those symptoms (in this case, infections) and be proactive in order to lower their own risk.
Biologics manufacturers need to be a catalyst for conversation, creating support programs that address these hidden emotional symptoms. That requires encouraging patients to engage in open, candid dialogue about their lowered immune defense with their physicians and their social circle.
It’s also crucial that patients have a firm grasp on the current state of their immune system. When patients understand the proper healthcare maintenance and appropriate lifestyle modifications they need to make in order to live with their suppressed immune systems, they will be healthier and safer. Engaging in appropriate healthcare maintenance minimizes complications and results in better compliance and, thus, efficacy of the biologic.
Posting “thought starters,” “key questions to ask your physician,” and “discussion guides,” can go a long way.
What about partnering with resources that help patients navigate challenging conversations about their new immune system status both at work and at home? Biologic manufacturers can continue to grow their support programs by understanding the specific areas of being immunosuppressed that pose a challenge for both patients and the physicians who treat them.
So much of autoimmune disease is outside the control of the patient; biologics manufacturers can help patients identify opportunities where they can be in control—by being informed, by being safe, and by practicing positive health maintenance habits.
Source note: All information in this blog post is based on the personal observations of Hanna Rose Alex, supplemented by secondary research.