Getting Health Care Right: A Conversation with Joseph Ahearn, MD

• By:  Bill Toland
• Posted:  September 24, 2019
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NOTE: An earlier version of this article appeared in AHN Network News. As of February 2021, the AHN Autoimmunity Institute includes 17 specialties and has now had patients come from 34 states across the U.S.

Dr. Joseph Ahearn leads Allegheny Health Network’s one-of-a-kind Autoimmunity Institute. One of the nation’s top rheumatology experts, Dr. Ahearn has co-written or published more than 100 reports in research of lupus and related diseases.

In our interview below, Dr. Ahearn discusses the inner workings of the Institute, the broad range of autoimmunity conditions that the Institute treats, and one of the first patients he ever cared for — a 16-year-old girl who died of lupus complications.

AHN Autoimmunity Institute: “unique in the world”

Bill Toland (BT): Since the new centralized AHN Autoimmunity Institute location opened in West Penn Hospital in 2018, have you been surprised by the demand?

Dr. Joseph Ahearn (JA): In our first 15 months, we’ve cared for patients from, remarkably, 29 different states, including Alaska and Hawaii, and across the continental U.S., from California to New York and from Montana to Texas. As our patient from Alaska left, she told us, “I’m coming back for my next appointment.” And this obviously isn’t their first stop. They’ve been to the named institutions, and haven’t been satisfied.

So they’ve come here, because this facility is unique in the world. It's unprecedented. We’re also talking with a patient from Lebanon who wants to come here.

BT: What makes the facility so unique?

JA: We modeled this Institute after our Lupus Center of Excellence. The idea was that patients with autoimmune diseases typically need multiple specialists, because they have so many health care issues. So we have 16 different specialties — and that number is growing — practicing here together, in the same place.

There are more than 100 autoimmune diseases. And we are able to care for patients with any of them. And that’s unusual. Typically, patients with many of the autoimmune diseases will be seen by a rheumatologist, but some — with multiple sclerosis, or myasthenia gravis — would need to be seen by neurologists in another location. Here, we can do it all for patients — with autoimmune diseases that may be common, such as rheumatoid arthritis, or with those that are ultra-rare, such as relapsing polychondritis.

BT: Why is it a big deal to have all of AHN’s autoimmunity specialists, as well as specialists in related fields and support staff, under one roof?

JA: Let me explain it this way — when a patient comes to us for the first time, particularly from another area or another health system, the first thing we ask for is their records. And collecting all of their health records can take weeks, even longer, just because they have no one quarterbacking their care. The physicians are dispersed geographically, and they have no common EHR. And their various doctors don’t necessarily talk to one another regularly.

Here, the specialists can all talk to one another, at the time of the patient’s appointment. They can see multiple specialists at one time, and they don’t have to wait for a phone call, or an electronic health record to be shipped back and forth. The specialists can then huddle, talk about the proper course of care, and set up future appointments while the patient is still here.

BT: This makes so much sense, intuitively. Why aren’t more institutes set up this way?

JA: It requires insightful leadership, across the enterprise — leaders who listened and realized that these diseases are common, they’re chronic, there’s no cure for most of them, there’s a lot of comorbidity and associated mortality, and they’re expensive.

So one of the missions of Highmark Health — improving value and improving outcomes while decreasing cost — was a guiding light. We knew if we wanted to accomplish all of that, in the field of autoimmunity, we had to change the way we delivered care, now and especially in the future.

But you’re right. This design makes great sense — it makes sense to the patients, it makes sense to the providers, and it makes sense to the enterprise as an integrated delivery and financing system. This has been several years in development. And we have been very fortunate that Allegheny Health Network has invested more than $30 million in creating this Institute.

Treating Autoimmune Diseases

BT: When people think of the most expensive diseases or chronic conditions, cancer, diabetes and heart disease are often top-of-mind. Autoimmunity conditions don’t seem to generate the same concern, from a cost perspective.

JA: Autoimmune diseases are very common, relative to cancers and heart disease. And they are expensive, yes. Some of the newer medications — what we call the biologics — are extremely expensive. But the real driver of the expense is the chronicity of these diseases. Patients might have these conditions all their lives. There’s also a lot of misdiagnosis in this area, so costs can compound when patients are misdiagnosed and therefore head down a rabbit hole of erroneous therapy.

Also, many of the traditional medications used to treat autoimmunity, like steroids, have profound side effects — bone loss, diabetes, hypertension, and so on. The bottom line is we need to get the diagnosis correct first, then we need efficient multispecialty care, and prevention.

And ultimately, we need to put ourselves out of business with cures.

BT: How can you mitigate the cost of treatment or drug therapies, either as a field or within AHN?

JA: We are starting to partner with pharmaceutical companies. Historically, we’re not in the business of developing drugs, and they’re not in the business of caring for patients. In the past, we’ve stayed clear of each other. But now they have started to realize they can learn from us. They’re not going to determine how we care for patients, obviously, but we can generate data that can help develop the standard care pathway — what drugs to use, at what time, on which patients. Getting the diagnosis right and the therapies right the first time can help mitigate downstream costs later, here and across the industry.

BT: Is it fair to say that autoimmunity medicine is poised to grow as a field over the next few decades, for the reasons you’ve just outlined?

JA: Yes. The medical field knows a lot more about autoimmune disorders than it did 30 years ago. As awareness goes up, diagnostic accuracy rises in concert.

We’ve been working with many advocacy groups, the major foundations such as the Lupus Foundation of America, to drive that awareness.

Take celiac disease — 15 years ago, you didn’t hear much about gluten-free diets. Now it’s ubiquitous. The more we learn, the more that falls under the autoimmunity umbrella.

BT: Diagnostics are still a challenge with autoimmune disorders, correct?

JA: Right. That’s where much of our research is pointing, on the diagnosis side of the equation. We have a great test for diagnosing lupus, which has been commercialized. And we have some additional patents, which are now in the process of getting to the patients.

Diagnosing autoimmune disease is both an art and a science. We have the artists, such as Dr. Manzi, but we need the science to catch up, so that not everyone needs to be an artist.

BT: Something like 75 to 80 percent of autoimmune diseases occur in women. Why is that?

JA: For some of our diseases, the percentages are even higher. Autoimmune thyroid disease, for example — 98 patients out of a 100 are women. We don't know why. It's one of the great mysteries of our field. There have been many studies looking into hormonal factors, and genetics, such as the X chromosome.

We will likely discover that the gender disparity in autoimmunity is due to a combination of genetic, hormonal, and other factors.

Growing the Model

BT: What are the priorities for the Institute for the next two years?

JA: We want to demonstrate that this investment was prudent — that it’s going to decrease costs and improve outcomes. So we’re collecting the data that will eventually show that.

Based on the feedback we’re already getting from patients and their families, and based on the traffic we’re already seeing without really even promoting this, I think we’re on the right track.

Frankly, we need to recruit. We’re nearly maxed out, given the number of physicians we have.

BT: Does having a one-of-a-kind institute make it easier to recruit?

JA: Yes, we are certainly attracting the best-of-the-best, and we are recruiting in all areas of our Institute. However, recruitment takes time. We can't just go to a website, click, and say, “I'm going to recruit you.” For example, we're not looking for just any gastroenterologist. We're looking for a GI physician with expertise and passion in caring for patients with autoimmune diseases. So we're very particular about who we hire.

And it's not just physicians. It could be a medical assistant, it could be a social worker. We wait to make sure it's the person we want. And if that means we go through a whole stack of resumes and don't find the right person, then we'll wait for another stack of resumes.

BT: What is the social worker’s role at the Autoimmunity Institute?

JA: We’re building a transformation team here, with several members — a clinical pharmacist, a behavioral health specialist, a transformation specialist, a nurse navigator, and a social worker. This team will basically coach patients individually, in their areas of expertise.

Take the clinical pharmacist. One patient came up to us and said, “My job is taking pills. I take 60 pills a day.” And they’re confused sometimes — what are the interactions? What are the side effects? The clinical pharmacist can help our patients with that.

Or the behavioral health specialist — many patients with autoimmune diseases also live with depression, anxiety and fatigue. So our behavioral health specialist can help with that.

It’s an important element of what we do here. The old model of care is that you treat the disease, and hope that the other issues go away. Well, that doesn’t work. So you need comprehensive, team-based care for these secondary health issues and disease manifestations.

We also can offer alternative therapies and integrative medicine — acupuncture, massage therapy, tai chi, nutrition coaching, and others — that can help patients better manage their symptoms.

“trying to treat them all”

BT: What was your path to AHN?

JA: I was at Johns Hopkins for 20 years, and I left for the University of Pittsburgh, where Dr. Manzi and I established the Lupus Center of Excellence.

After about 15 years there, in 2010, I came to AHN, initially as the Chief Scientific Officer and Vice President for Research for the Allegheny Singer Research Institute.

BT: Was autoimmunity always your specialty path? Did you have any other interests?

JA: In high school, I attended a lecture from a plastic surgeon. He cared for patients with burns and birth defects. So initially that was my career path. But as often happens in med school, you take a different path, and your mentors and your experiences end up steering you in one direction or another.

In my third year of medical school, I cared for a 16-year-old girl. She was the first patient with autoimmune disease I had ever cared for, and she had lupus. She was admitted to the ICU, and I was by her bed when she died. I saw how lupus affected her kidney and her brain. And I was just devastated. So that’s how I ended up getting steered toward rheumatology and lupus.

BT: Do you still see patients?

JA: No. I used to, and it’s why I got into medicine. But when I left Hopkins, there were few effective interventions at the time, and there weren’t many accurate diagnostics. We didn’t have much to offer patients. It was frustrating. So rather than treating one patient at a time, I really thought I could have more of an impact by trying to treat them all — discovery, diagnosis, drugs — and by creating care models, like our Lupus Center of Excellence and the AHN Autoimmunity Institute, that lead to more effective medicine.

BT: Is that as rewarding as seeing patients?

JA: In a different way. I was talking with a colleague from Harvard recently, telling him that our Autoimmunity Institute was still under the radar. He said, “Joe, you’re not under the radar. The whole world is watching to see what happens. We’re all tuned in.”

So we really have raised the bar. And I’m proud of that.