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American Autoimmune Related Diseases Association: 'Small but Mighty' Voice for Awareness
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Only about one-third of Americans can name a single autoimmune disease, despite the fact that approximately 50 million of them have been diagnosed with one, according to Virginia T. Ladd, president, founder and executive director of the American Autoimmune Related Diseases Association.
That remains a problem, she said, one that was much worse in 1991 when she founded the group, also known as AARDA, to attract more attention to autoimmune conditions as a disease category, as well as increase awareness, education and opportunities. It is currently the only national nonprofit that addresses autoimmune disease as a category of disease, according to Ladd.
“It is very important, because if only close to 33% of Americans can even name an autoimmune disease, then they don’t know to tell their doctor that they have a family history,” Ladd said. “That question is usually not asked. There might be a question about arthritis, and there might be one about diabetes, but the person seeing the doctor may not understand the disease category of autoimmunity. They could be having symptoms that might point to rheumatoid arthritis, but they have no idea that their father’s Crohn’s disease is an autoimmune disease.”
Filling the Research Pipeline
Ladd said AARDA is “small but mighty,” a characterization that is perhaps best illustrated by the fact that it often dedicates more than 20% of its small annual budget toward research.
“Approximately 23% of our funds go to research, including scientific meetings,” Ladd said. “That is out of a budget of about $1.3 million.”
According to Ladd, AARDA funds basic autoimmune research, with a specific emphasis on sending young investigators to “fill the pipeline” with more researchers interested in autoimmunity.
Currently, AARDA is working in partnership with Allegheny Health Network’s new Autoimmunity Institute on several studies regarding the cost of autoimmune disease, and whether coordinated care can lower those costs. The two organizations announced that AARDA had provided the seed money for the studies last May.
“Often the doctors order all the same tests and it becomes very expensive for the patient in the health care system to see all these different specialists,” Ladd said. “Also, the patient ends up coordinating their own care, which is not necessarily good.”
In addition to funding research, AARDA will also use its budget to supplement or bolster scientific meetings, and sometimes host its own colloquia with the aim of furthering the spread of knowledge and research.
According to Noel Rose, MD, PhD, professor emeritus at the Johns Hopkins University Schools of Medicine and Public Health and senior lecturer at Harvard Medical School, this is what truly sets AARDA apart from other disease advocacy nonprofits.
“I think AARDA is unusual among these advocacy groups,” he said. “They do what most advocacy groups do — they will send literature, and will refer people who contact them to specific associations, and they will represent various autoimmune diseases collectively in front of Congress. However, they have been unusual in using its very, very meager budget to support research in many different ways.”
Advancing Knowledge
AARDA currently sponsors a series of very small, but very high-level, scientific colloquia, hosted whenever funds are available, according to Rose, who also served as the first chairman of AARDA’s scientific board. Each colloquium will focus on a “hot topics of research,” which the organization thinks could further the understanding of autoimmune disease.
“The idea is to bring together scientists who are leading investigators in what is new and are receiving attention in immunology, but haven’t yet directed these new advances or ideas toward the problems and challenges in autoimmune disease,” Rose said. “That is unique to AARDA. Very few organizations do this sort of thing to really promote novel research in a field.”
According to Ladd, the next AARDA colloquium, scheduled for November in Washington, D.C., will cover resident memory T-cells. There, 18 leading investigators in the field will spend the day discussing their work and looking for new areas of research.
“AARDA uses its own funds to do this,” she said. “So, once we cover a particular topic — and it is always published in a major journal — that initiates interest on that particular aspect. One recent example is fatigue. It is a major symptom of multiple autoimmune diseases. However, there is very little research into the mechanism of fatigue, and yet it is one of the most devastating symptoms of autoimmune disease. It interferes with life and work, and is the reason for divorce and disability.”
Another recent AARDA colloquium focused on the possible connection between checkpoint inhibitor therapy for cancer and autoimmune disease.
“Some of the new treatments for cancer are causing autoimmune disease, and some of the new therapies for autoimmune disease are causing cancer,” Ladd said. “That situation we think needs to have much more research, rather than just have all autoimmune research in its silo and have all cancer research in its silo.”
In addition to hosts its own scientific forums, AARDA will also support other meetings, Rose said. This includes sponsoring lunches and coffee hours, which provide a place for meeting attendees to socialize and share ideas, he added.
“They have been very helpful to the NIH in providing additional support for meetings that the NIH cannot use its funding for, to promote or enhance the meetings,” Rose said. “Specifically, they will provide lunches, coffee hours and social parts of meetings that are, in a sense, critical because they will bring people together and have them meet and talk to each other. They have used their funds very wisely to help promote other organizations that are doing good research.”
Referrals for Patients and Investigators
According to Rose, another way AARDA often supports other organizations is through research referral. They accomplish this using a central registry of various disease advocacy groups, he said. When a researcher reaches out to AARDA for information on patients with a specific condition, AARDA uses its registry to refer the investigator to the appropriate group.
“We have developed a registry at AARDA that I call the registry of registries,” Rose said. “There are many registries out there, with every disease group having one. They are very specific for the disease. What AARDA does is work with these disease-oriented registries, so that a researcher can call, and AARDA can refer them to an individual society and say you can get information on lupus patients here, and scleroderma patients there. No one else has thought of doing anything like this, and they have done this to great effect.”
Rose added that this could only be possible through the cooperation with other disease advocacy groups.
“The reason they have been uniquely successful, is that Ladd has been super careful in working with other disease societies,” he said. “She makes sure that all of the players know what AARDA is doing. Things can sometimes be competitive out there, so she is careful to respect the turf of the other societies.”
Regarding patients, AARDA is working to provide triage services for individuals with autoimmune symptoms who contact the organization seeking information.
According to Ladd, patients often are at a loss regarding where to seek a diagnosis, or whether to see a rheumatologist, a dermatologist, a neurologist or a nephrologist based on their symptoms.
“A very high proportion of people who call us are patients who are trying to find a diagnosis, and they really don’t know where to go because autoimmune disease can affect multiple parts of the body,” she said. “They may have had joint pain last week, but gastrointestinal problems this week.”
Ladd added that she hopes AARDA’s partnership with the Autoimmunity Institute can lead to developing a diagnostic triage there, which could better serve patients seeking answers.
“That is one of the things we hope the Institute can provide — a diagnostic triage, where we can triage people who don’t know what they have and refer them to the correct specialist,” she said. “It is very difficult to triage someone over the phone. We listen, and we try to get them to the right people, but we are not physicians and it can be difficult.” – by Jason Laday
Disclosure: Ladd and Rose report no relevant financial disclosures.