Advocating for Better Care: Virginia Ladd on AARDA and Patient Advocacy

The American Autoimmune Related Diseases Association (AARDA) partnered with Allegheny Health Network (AHN) Autoimmunity Institute on a public forum, “What Every American Needs to Know about Autoimmune Disease.” The forum is free to everyone and will be held on September 28 from 10 am to 2:30 pm at the AHN Autoimmunity Institute at West Penn Hospital in Pittsburgh, PA. Speakers include Robert H. Phillips, PhD, founder and director of The Coping Counselors at the Center for Coping, Long Island, NY, and Susan Manzi, MD, MPH, chair of the AHN Medicine Institute and director of the AHN Lupus Center of Excellence. Topics will cover holistic treatment, nutrition and exercise, mental health, and coping with autoimmune diseases. 

In an interview with the Interdisciplinary Autoimmune Network (IAN), Virginia T. Ladd, executive director of AARDA, discusses the forum, patient advocacy, and AARDA’s “Let My Doctor Decide” campaign, which seeks to change step therapy legislation.

IAN: Why did you create AARDA?

Ladd: I was diagnosed very early with an autoimmune disease and have managed to live through several autoimmune diseases since. For many years, I was president of the Lupus Foundation of America. From that perspective and that of my family members, who are also affected by various autoimmune diseases, I began to wonder why we did not look at these diseases as a category but rather separately in research, awareness, and advocacy.

I founded AARDA because I thought there should be more information sharing among the different specialties, and patients needed to have a place where they could get information regardless of which autoimmune disease they had. Also, as a disease category, there is a larger number of patients for whom we can advocate for. After about 29 years, autoimmune diseases are now thought of as a disease category. It has taken a long time for a paradigm shift in how we address these diseases, but we are getting there.

IAN: Why did AARDA decide to focus on holistic patient care at this year’s forum?

Ladd: Almost all patients who live with long-term, chronic conditions will follow their traditional treatment plan. However, they will also want to be an advocate for themselves and want to feel like they are doing something for themselves, which sometimes includes holistic approaches. The AHN Autoimmunity Institute, where we are holding the forum, does incorporate some alternative or holistic practices, such as meditation, into their treatment plans. We encourage patients to take control and to discuss with their doctor what they want to do so it can be incorporated into their traditional care.

IAN: As a patient yourself, what do you wish providers knew more about holistic care?

Ladd: It is such an open field now, with some ‘quackery,’ so to speak, and there are a lot of over-the-counter options that people can be talked into trying. I think it is important for physicians to know about these options so that they can discuss the pros and cons of such treatments in a way that patients can understand and trust. I know many patients who think the doctor will not go along with what they are trying and as a result, do not tell their doctor about alternative therapies they are using in addition to their traditional medications. However, some alternative therapies may interfere with some medications, or patients could experience an adverse effect, but their doctor will not know it. This is especially common among patients under 35 years of age. Clinicians need to understand what is out there so that they can actually coach the patient.

IAN: In your opinion, what is the value of holding a public forum where patients and providers can interact and learn together?

Ladd: Patients with autoimmune diseases live a long time, and their diseases usually last a lifetime with periods of remission and flares. It is a lifelong journey, and very few people will have complete remission of their disease. With that in mind, it is imperative that you learn as much about what is going on as possible, research your disease, learn what is new in research, and what new approaches are available. It helps to know about the different therapies because sometimes people get stuck on a treatment when there might be something out there that could help them more, but they have not learned about it yet. Our forums do not really go too much into specific treatments. Instead, we concentrate on helping people understand the disease and the common thread for all autoimmune diseases.

The secondary benefit of this forum is patients learn about other autoimmune diseases. It is common for patients to have more than 1 autoimmune disease as the longer they have an autoimmune disease the chances of developing more can increase significantly. Understanding the difference between diseases, what connects them, and how these diseases run in families can help family members get a diagnosis as well.

Health surveys do not usually ask whether a patient may have a family history of autoimmune diseases. One barrier to asking this question in surveys is many patients would not necessarily know which diseases are considered autoimmune diseases and the connection between these diseases. For example, a patient may not realize their brother’s psoriasis is connected to their rheumatoid arthritis. Many times, a patient’s family member may be having a difficult time getting a diagnosis, which is typical in cases of multiple autoimmune diseases. Thus, it is important to educate everyone about the connection between autoimmune diseases because that could help someone with a diagnosis. We encourage patients to share what we call their “Autoimmune Quotient” (AQ), which is the number of family members with autoimmune diseases in their family history, with the doctor. The first step to diagnosing these conditions is to think of these conditions as a possibility, and if a patient can prompt the doctor to consider these conditions, the chance the patient receiving the correct diagnosis improves.

IAN: What are the key takeaways you want patients and providers to leave your event with

Ladd: I would like them to leave the event with better knowledge of the autoimmune disease category and know what are the common threads are, how they can cope with their disease(s), how they can talk with other patients and learn from each other, and how they can become a better advocate for themselves so they can improve their quality of life and conversations with their doctors.

IAN: What else is AARDA working on?

Ladd: One of the issues that is important to us right now is the curtailment by insurances companies of access to many of therapies that patients are prescribed. Patients sometimes do not know they are going through step therapy, and if the patient does not know they cannot appeal the process that could potentially be harmful to them. Our association is leading a national campaign on educating the public and patients about step therapy and making it easier for them to appeal called—“Let My Doctor Decide.”

I want to say that we do not oppose step therapy because it is good clinical practice. You do not want to use a sledgehammer when a tack hammer will do, but you do not want to use a tack hammer when you need a sledgehammer. However, we believe the physician should be the one making the decision and not insurance companies. At the moment, step therapy is designed to reduce costs for insurance companies and not for the benefit of patients.

For example, I have an employee with sarcoidosis. When she was diagnosed with sarcoidosis, she did not know about step therapy and she was put on a lot of corticosteroids. She ultimately developed steroid-induced diabetes, gained about 40 pounds, could not sleep at night, and was very jittery due to the therapy. After 6 months, her doctor said to her ‘okay, now I can give you what I wanted to give you in the beginning.’ It made her angry that she went through all of those unnecessary adverse effects because of her insurance company, even though that is not what her doctor wanted to do.

The skill and art of practicing medicine is knowing how to treat individual patients, especially those with autoimmune diseases. In autoimmune diseases, patients can experience the same autoimmune disease, but in very different ways because everyone’s immune system is different.

IAN: For providers and patients who want to advocate more, do you have any recommendations or resources for them?

Ladd: We have resources for people to be better advocates, particularly for access issues, such as step therapy and copays. The “Let my doctor decide” website has guides patients can download with questions they can ask their doctor. For example, our guides encourage patients to ask their doctor about their treatment plan and to specifically ask: is this the treatment you want me on if there were not insurances companies involved? If the doctor says no, the guide can help patients ask to advocate for themselves and appeal step therapy so the patient can receive the medication the doctors wants them on.

We are trying to encourage patients to ask more about their treatment plan, particularly why their physician prescribed a medication and what the physician expects the medication to do for the patient. In a focus group, we found that doctors who spend an extra 30 seconds explaining why they are prescribing a medication and what they expect it to do improves adherence to the medication. So, we try to encourage patients to ask, and we encourage doctors to take that extra 30 seconds to get better compliance by telling their patients what the expectations are for the medication and when to notify them when something is not right. Another part of treatment we encourage patients to ask about is the number of people who experience these adverse effects, because the televised advertisements can cause some fear towards certain treatments.

Better communication with the doctor is important, and to improve communication, patients need to ask questions. These include what to expect, the likelihood of experiencing an adverse event, what to do if there is no improvement, and what to do if they experience an adverse event.

Autoimmune diseases require more precise medication and the art of medicine is knowing and treating patients with what the physician either knows will work or thinks will work based on the patient’s history, preferences, and disease course.