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From the struggle of obtaining insurance approvals to addressing the nationwide shortage of rheumatologists, Dr. Baker Frost talks about her experience treating patients with autoimmune disease.
Deanna Baker Frost, MD, PhD is an Assistant Professor at the College of Medicine, Medical University of South Carolina (MUSC). Her clinical interest focuses on autoimmune disease and fibrosis. In an email interverview with HCPLive®, she addressed important aspects of treating autoimmune diseases, as they are often accompanied by unique challenges for both the patient and the provider.
The month of March is dedicated to autoimme disease in order to spread awareness of the various conditions, the patients who live with them, and the clinicians who treat them. Most importantly, the need for paitent and provider education regarding such conditions is emphasized during this month.
In addition to the resources that Baker Frost mentioned, the US Pain Foundation published an Autoimmune Diseases Edition of their Invisible Project magazine. It's a free resource designed for patients and healthcare professionals. The print publication can be ordered and access is also available online.
Many individuals who live with an autoimmune disease also live with chronic pain and other complications brought on by their condition. Symptoms related to these diseases can take some time to properly diagnose and because of how they can progress time is critical.
HCPLive: As a rheumatologist and autoimmune disease expert, are there any conditions that are especially in need of greater awareness?
Baker Frost: In rheumatology, most diseases begin with similar symptoms which then can involve other organs. Thus, expedient evaluation and diagnosis is important so that treatment can begin. Systemic Sclerosis (scleroderma) is a disease with scarring in the skin, leading to tight skin. But, this tightening can also occur in the lungs leading to inability to breath. Because lung disease can occur in other autoimmune diseases, I urge patients to notify their physicians if they notice an inability to breathe.
HCPLive: What are the most impactful obstacles that patients with autoimmune diseases encounter?
Baker Frost: Because most autoimmune diseases are rare, most patients have a delay in obtaining the proper diagnosis and starting effective treatment. The shortage of rheumatologists nationwide also causes a delay in disease diagnosis for our patients. Often, once the patient is evaluated by a rheumatologist, the patient has developed several medical complications due to the delay. This delay negatively impacts patients physically and emotionally.
HCPLive: Have there been any pivotal breakthroughs in researching these diseases?
Baker Frost: The past 30 years have been an exciting time in the field of rheumatology because we have learned more about several autoimmune diseases. As a result, many new medications were developed that have successfully delayed disease progression and prevented lifelong disability, and in some cases, death. Based on these successes, we continue to research new therapies so patients with an autoimmune disease can experience a better quality of life.
HCPLive: How can healthcare professionals best educate themselves and their patients when it comes to diagnosing, managing, or finding resources for patients with autoimmune disease?
Baker Frost: The American College of Rheumatology (ACR) is a professional organization which has resources available specifically for healthcare providers and patients for most autoimmune diseases. These resources are available through their website and provides in depth information about diagnosing autoimmune diseases and the current treatment options. Additionally, there are foundations centered on most autoimmune diseases which provides patient support resources and information to clinicians.
HCPLive: Where are the biggest gaps in care and what should be focused on in the future?
Baker Frost: Often we find difficulty obtaining insurance approval for a number of our therapies on behalf of our patients. While this is an exciting time for rheumatology due to a greater number of FDA approved treatments, we still use some medications that are considered off-labeled. Because these therapies are not FDA approved, rheumatology providers will spend several hours appealing to insurance companies, which delays care. Therefore, our patients need better financial support so that they are able to receive important treatments timely. Also, we need more research funding so that scientists can continue to study autoimmune diseases and develop better treatment options to improve patient care. Finally, there is a shortage of rheumatologists nationwide which will make it more difficult for patients to be diagnosed and treated in a timely fashion. There is a need to train more clinicians to help meet the demand.