Closing the Care Gap in Autoimmune Disease
Closing the Care Gap in Autoimmune Disease
This article was published by Medscape you can read it here
Miriam E. Tucker
October 04, 2018
A new, first-in-kind center in Pittsburgh is addressing a major gap in medicine: the complex needs of patients with one or more autoimmune conditions, who typically see numerous specialists in an uncoordinated fashion and often remain undiagnosed and untreated for years.
The new $30 million Highmark/Allegheny Health Network (AHN) Autoimmunity Institute offers a distinct alternative by providing comprehensive multispecialty care in a one-stop setting, and also by conducting research into diagnostics, treatments, and care delivery.
The institute comprises four “centers of excellence” for the treatment of lupus, rheumatoid arthritis, inflammatory bowel disease, and celiac disease. But the facility’s many specialists—including those from rheumatology, allergy/clinical immunology, pulmonary, dermatology, gastroenterology, nephrology, endocrinology, and cardiology—all work together to address the needs of patients with a wide variety of common, not-so-common, and sometimes unlabeled autoimmune conditions.
It’s the design of the future, in my mind. It’s getting doctors out of their offices. We consult with each other…
“What we’re doing is unique. You will not find this kind of institute that has this kind of multidisciplinary, comprehensive approach to patient care along with research,” says rheumatologist Susan Manzi, MD, MPH, chair, AHN Medicine Institute and director of the Lupus Center of Excellence.
Housed at Pittsburgh’s West Penn Hospital, the Autoimmunity Institute fills about 48,000 square feet, including clinical, laboratory, and administrative space. There are 16 exam rooms surrounded by a large corridor, dubbed the “huddle hall,” where the specialists, along with nurses, pharmacists, nutritionists, and other staff, meet to discuss management of individual patients. There are no private offices with shut doors.
“It’s the design of the future, in my mind. It’s getting doctors out of their offices. We consult with each other…Doctors don’t typically do it because it’s not convenient. We’ve made it convenient,” Manzi says.
“It’s designed as a new model of team-based care,” says Autoimmunity Institute chair Joseph M. Ahearn, MD, who is also chief scientific officer for Allegheny Singer Research Institute at AHN and professor of medicine at Temple University’s Pittsburgh branch.
Ahearn notes that the multiple individual specialists who timeshare within each of 14 specialties “aren’t just token physicians. They’re all interested in autoimmunity.”
Open since February 2018, the Institute now sees between 1000 and 2000 patients a month. Most are outpatients who typically see two or three specialists in one day. The majority are local to the tri-state area around Western Pennsylvania, although others have come from farther away in the United States and from other countries, Ahearn notes.
Manzi adds that the patients “love the fact that they see the same faces when they walk in. There’s a comfort there.”
‘People Had No Place to Go’
According to the American Autoimmune Related Disorders Association (AARDA), there are about 100 known chronic autoimmune conditions, affecting about 50 million people in the United States, of whom about 75% are female.
Since 1996, Autoimmune Association has conducted surveys of patients with lupus, multiple sclerosis, Crohn disease, rheumatoid arthritis, and Sjögren syndrome to determine the circumstances surrounding their diagnoses.
In the most recent survey, conducted in 2017, the 1423 respondents reported seeing an average of about four different physicians and waiting about 3 years before receiving a diagnosis. That’s better than the six physicians and 5 years reported in 1996, but it still leaves much room for improvement, says Autoimmune Association President & Executive Director Virginia T. Ladd, for whom the concept of autoimmunity centers of excellence has been a goal since she founded Autoimmune Association in 1991.
“People had no place to go. If they didn’t have a diagnosis, they could call us, but we’re not doctors. We could try to get them in the right queue, but autoimmune diseases can mimic each other…I was always very surprised that in the whole USA there was no institute of excellence where patients could see multiple specialists. Patients are left to coordinate their own care, and that’s after they’re diagnosed. It’s worse when they’re not diagnosed,” Ladd says.
Indeed, that was the thinking behind Manzi and Ahearn’s establishment of the Lupus Center of Excellence in 2002, then housed at University of Pittsburgh Medical Center. The two rheumatologists—who are married to each other—relocated the lupus center to AHN in 2010.
Lupus is tricky to diagnose because there’s no specific laboratory test for it, Manzi notes. Diagnostic criteria from the American College of Rheumatology and the Systemic Lupus International Collaborating Clinics are used clinically but were actually developed for research purposes. Sometimes symptomatic patients don’t exactly meet the criteria, while others have concurrent autoimmune conditions with overlapping symptoms.
Manzi points out that even patients with “textbook” lupus cases require multiple specialists because the disease affects several different organ systems. “So even within a diagnosis, people still get lost navigating their specialists. They see their neurologist over here, their cardiologist over there, and they’re lucky if [the two] communicate. There’s a disconnect even within one disease. That’s why we originally created the Lupus Center of Excellence. The concept was multispecialty care under one roof for one disease.”
‘There’s No Typical Patient’
Manzi and Ahearn decided to expand the concept to all autoimmune diseases after moving to AHN. “We found that many of the people who were coming to the lupus center didn’t have lupus. They had other autoimmune conditions…It’s common for someone with one autoimmune disease to have another, or to have family members with the same or other diseases. We wanted to be there not only for somebody with one disease but for when they have more than one, or for their sister or their mother,” Manzi says.
In addition to the four conditions that fall under the centers’ umbrellas—lupus, rheumatoid arthritis, inflammatory bowel disease, and celiac disease—there are other conditions commonly seen among patients: Sjögren syndrome, myositis, scleroderma, and various forms of vasculitis, some of them very complicated and serious. Other patients have psoriasis, thyroid disease, and a variety of autoimmune lung conditions.
But, Manzi explains, some patients exhibit such symptoms as joint pain, profound fatigue, rashes, and gastrointestinal issues that suggest autoimmune etiology—often along with a family history of autoimmunity—yet don’t fit neatly into specific diagnostic criteria.
“People are not textbooks…Many people in these families have a sprinkling of things. They don’t meet criteria for this disease or that disease, but they have features of autoimmunity. We tell people, ‘You don’t need a label. We can still help you.'”
Indeed, Ahearn adds, “Even just lupus patients are like snowflakes; everyone is different. Some have been diagnosed with lupus but treatments aren’t working and it turns out that they don’t have lupus. Or they’ve been told that they have fibromyalgia or it’s psychological, and it turns out that it’s lupus or myositis or another autoimmune disease. There is no typical patient. It takes time and effort and compassion to listen to their stories.”
The Research Side
Along with patient care, the institute’s research currently is focused on identifying better diagnostic testing—particularly “liquid biopsies”—for diagnosing autoimmune conditions, as well as improved treatments. In lupus specifically, Ahearn notes, “There are no tests that are 100% accurate. It’s not like cancer, where you look at a piece of tissue…A big area of our research is looking for better blood tests.”
To date, Manzi and Ahearn have licensed and commercialized a platform of biomarker lab test panels under Exagen Diagnostics’ AVISE series, based on cell-bound complement activation products. These tests provide clinical information from a single blood draw to help establish diagnoses of several different autoimmune conditions. But, Ahearn says, “Liquid biopsies such as the AVISE tests are not yet 100% precise. That is our goal.”
Other research, with funding from AARDA, will investigate the costs of autoimmune diseases and the potential cost-effectiveness of this type of coordinated care model.
“Autoimmune disease is a giant hole in healthcare cost accounting. Nobody knows how much it costs,” Ladd says, noting that “when we do talk about costs, we’re talking about people who are diagnosed. But how much did it cost to get a diagnosis? How many repeated tests? Visits? How many different specialists? How many years? We don’t have those data.”
Despite that current dearth of information, Highmark/AHN saw fit to invest about $30 million into the Institute. At first it wasn’t easy to convince executives of the need, Manzi says, but “[once they] recognized all of the referrals we’re getting and the patient satisfaction and the uniqueness, they love it now.”
Indeed, Ahearn says, just in the past few weeks they’ve received referrals from several US states, including Alaska, and from foreign countries, including Trinidad and Lebanon.
“[Patients] are reporting a broad range of autoimmune diseases, including some of the less common conditions such as IgG4-related disease and relapsing polychondritis. A common theme…is that they are struggling to quarterback their own healthcare, trying to coordinate many different specialists and an armamentarium of medications.”
The plan now, he says, is to open satellite centers around the Pittsburgh area and beyond. “We will go geographically to where the patients are.”
Ladd is hoping that the Institute will serve as an example for other institutions nationwide. “We’re working with them until it solidifies…to build it out so it can be a model. When they are successful and they make enough money to support it, it will be attractive to other major medical centers in other states. That’s what we would like to see.”
Manzi and Ahearn hold patents for several of Exagen’s AVISE tests. They also receive research funding from more than 20 foundation, pharmaceutical, biotech, and federal sources, including the National Institutes of Health, Department of Defense, Arthritis Foundation, Lupus Foundation of America, American Heart Association, Pennsylvania State Department of Health, American College of Rheumatology, Foundation for the Lupus Center of Excellence and, most recently, the American Autoimmune Related Disorders Association.
Ladd has disclosed no relevant financial relationships.
Medscape Rheumatology © 2018 WebMD, LLC
Any views expressed above are the author’s own and do not necessarily reflect the views of WebMD or Medscape.
Cite this article: Closing the Care Gap in Autoimmune Disease – Medscape – Oct 04, 2018.
Join our email list
Receive the latest blog articles, news, and more right to your inbox!
Related articles you might be interested in
Breaking Barriers: Empowering Women of Color Living with Autoimmune Disease Through a Pilot Support Group
Find more resources on autoimmunity
Learn more about autoimmunity, diagnosis tips, how to find a physician, and more.