Keywords: Rheumatology, rheumatoid arthritis, rheumatoid autoimmune disease, cricoarytenoid arthritis, rheum, American College of Rheumatology, RA Warrior, Rheumatoid Patient Foundation, e-patient, empowered patient, patient engagement.
Citation: Young K. Present, patient, and accounted for: how and why patients are present at scientific meetings of the American College of Rheumatology. J Participat Med. 2012 Feb 24; 4:e3.
Published: February 24, 2012.
Competing Interests: The author has declared that no competing interests exist.
2009: Why Patients Are Interested in the ACR Scientific Meeting
Inconsistency of Information
Back in the eighties, I consulted psychological abstracts in the college library for research papers. During the nineties, I read dozens of medical journal articles secretly printed out by a friend so that I could learn about the thyroid disease I’d had since childhood. By the 2000s, I knew that the internet gave laypeople access to more medical information than ever before. When I became ill in 2006, the internet was the first place I turned. I wanted information about what my possible diagnosis could be, especially after my doctors told my husband that I must not be ill because there was “no illness with these symptoms.”
All my life I had loved mysteries. And treasure hunts. Now, the mystery was my illness. And the treasure hunt was for useful information. The puzzle I wanted to solve was how I could get my life back.
Finally diagnosed with a rheumatoid autoimmune disease (RAD) commonly called rheumatoid arthritis (RA), I began my online investigations using primitive methods such as marking printed articles with highlighters and writing questions on legal pads. As a patient with no medical training, I began by reading well-known sites such as WebMD or About.com. The articles mentioned medical studies, but they did not usually cite them explicitly. Before long I progressed to reading primary sources: medical journal articles, and patient stories on blogs and message boards.
Determined to make the mounting hours of research count, I bought a new laptop and a high-speed internet connection. As questions accumulated amid my own medical circumstances, I looked for answers. Meanwhile, if I noticed a patient who was looking for answers that I had found, I directed her to the place where I’d found them. Much of my time was spent in this way.
It was impossible to miss the numerous discrepancies between patient stories and official descriptions of the disease. One case in point is cricoarytenoid arthritis (CA) or inflammation of the cricoarytenoid joint (CJ) in the larynx. Any moving part of the body can be affected by RAD, including the heart and the vocal cords. In CA, the little cricoarytenoid joints that make the vocal cords work can develop rheumatoid nodules or become inflamed, stiffened, or immobilized. Patients notice unexpected hoarseness or a raspy voice. Sometimes the voice is suddenly quiet for hours or days or longer — even years in rare cases. Breathing may also be hindered. Some exploration revealed these facts:
- Rheumatoid patients frequently experience symptoms of cricoarytenoid arthritis.
- Autopsies of patients with RAD show that the cricoarytenoid joints are almost always affected.
- Numerous well-respected medical authorities state that it is atypical for RAD to affect the cricoarytenoid joints.(CA is not mentioned at all in the online pages for RA by the Mayo Clinic, Cleveland Clinic, Johns Hopkins, Centers for Disease Control, National Rheumatoid Arthritis Society, or the American College of Rheumatology).
- As a result, most CA symptoms are dismissed by doctors and not recorded in medical charts.
This process repeated itself many times: I compared academic articles, case studies, and patient testimonies. As I explored more, I noticed more contradictions. There were discrepancies between patient descriptions of RA and descriptions of RA in general medical websites. There were also contradictions between what doctors told me personally and what I read in medical journals. When I tried to resolve the differences, I realized that that I was not the only person with RA who was confused or frustrated. I met many patients whose doctors dismissed RA symptoms as non-existent or meaningless. I determined to take patients’ narratives at face value, unless there was a reason to doubt them. Whether it was a patient’s story or a medical case study, I questioned the traditional assumptions and looked for evidence and patterns.
As I collected information, I began writing. My disappointment in the general RA information on respected websites made me determined to create a website where people could access accurate and current information about RA. Patients and others would be able to ask questions and discuss RA without an atmosphere of disbelief. Current research could be considered while familiar, but incorrect, information could be scrutinized.
Inconsistency of Care
The website, Rheumatoid Arthritis Warrior (http://rawarrior.com/), has grown to almost 600 pages and is accessed daily by thousands of caregivers, providers, and patients interested in improving RA care. Patients especially need information about how to manage their rheumatoid disease. Currently available treatments are only effective for a minority of patients and objective tests for disease activity are extremely inadequate. Care for RA is inconsistent and depends almost entirely upon the expertise and benevolence of physicians. Patients are reliant on finding doctors who pay heed to patient outcome measures and can expertly apply aggressive and new treatments. There is a shortage of rheumatologists and few have adopted the latest “treatment to target” paradigm.
Rheumatoid disease is destructive, progressive, and systemic. Whether people are disabled suddenly or gradually, they worry about their health. The mortality rate for RAD has not improved along with that of the general population over the past four decades. When treatments are minimally effective and doctors are dismissive of symptoms, patients ask, “Is this all there is?” They need answers to basic questions and they need hope that care can be improved.
Patients like these need to know what is happening in the ivory towers of medicine. They want to read the studies for themselves. They want to know about every option for managing the disease. They want to hear about new compounds that represent potential treatments. Patients want to get better or at least slow disease progression, and they are willing to learn about their disease to help accomplish that.
2010: How I Came to Attend My First ACR Meeting
Significance of the Misunderstandings
In October, 2009, I had watched eagerly from home for reports from the American College of Rheumatology (ACR) Scientific Meeting in Philadelphia. New criteria were being revealed for the classification of the disease called rheumatoid arthritis. I had written about the inadequacy of the current criteria used for diagnosis, so the discussion was particularly important to me. Of course I believed that it was also important to other patients as well because improving diagnosis could lead to earlier and more successful treatment.
In 2010, I continued to write about improving diagnosis and care for rheumatoid patients, focusing often on the optimism of the latest research. I also began another form of research by asking patients to describe experiences with particular symptoms such as swelling and stiffness. I believed that we could create a more accurate depiction of the disease by demonstrating ways that patients actually experienced it.
As I addressed more contradictions in some medical literature, I also objected to the ways in which mass media misrepresented the disease. I began to see connections between the ways in which rheumatoid disease is often trivialized, the low level of research funding for it, and the inconsistencies in clinical care. Patients almost universally describe a lack of comprehension of the seriousness of their illness and of their needs for assistance or accommodation. The misunderstanding of the disease causes problems which may involve family, employment, insurance coverage, and the ways clinical needs are addressed.
Two steps into the future
By the fall of 2010, I felt compelled to take two steps that would eventually lead to significant change for me and other rheumatoid disease patients. I initiated some purposeful discussions about creating a nonprofit foundation for improving the circumstances of people living with rheumatoid disease. And I applied for a press pass to the 2010 Scientific Meeting of the ACR in Atlanta.
The press page on the ACR’s website did not have an option which was applicable to me, so I used a familiar avenue to appeal to them: social media. Via Twitter, I requested that they consider allowing me to apply for a press pass. Numerous others added their voices in tweets describing the relevance of my writing and size of my audience. The responses by whoever was tweeting for the ACR made several of us wish we could hear what was said in their offices. Yet, within a couple of weeks, I was buying two plane tickets to Atlanta for me and my adult daughter.
Preparing for the ACR meeting included more than purchasing new business suits and studying abstracts. I also had steroid injections in finger joints, a nerve ablation procedure on my cervical spine, and new prescriptions to deal with increases of pain and inflammation while traveling. The week itself was physically very difficult, but with a good friend to guide us, we were able to gather much valuable information. At least as important was hearing first-hand from particular researchers who held a point of view which is more accurate and compatible to what patients experience with RA. It is impossible to overestimate the effect that week had on me, and I brought all of it back to the patients I help every day.
2011: Patients at the 2011 ACR meeting
Early in 2011, I completed the process of forming a new nonprofit, the Rheumatoid Patient Foundation (RPF), a 501(C)3 dedicated to improving the lives of people living with rheumatoid disease. We have sought to directly address inconsistencies related to understanding of the disease, clinical care of patients, and research needs. As the first organization to represent the patient point of view specifically for this disease, we are educating, advocating, and researching as other organizations have for other conditions, even other rheumatic disease conditions.
While many of our goals are similar to other organizations, some of our problems are more complex. Educating the public about a disease is something countless groups have done, and it is not unusual to educate patients about options for support, treatment, and disease management. However, RA patients are also very motivated to enlighten pharmaceutical researchers and rheumatology professionals about our disease. Some reasons why:
- While top rheumatologists may pursue early and aggressive treatment, most RA patients’ physicians use a protracted diagnostic process and a gradual “step-up” treatment approach.
- While top researchers espouse “treatment to target,” typical RA patients do not have treatments adjusted with frequency.
- While investigators compare the benefits of various monitoring methods, most patients are not monitored with any regularity.
- Many doctors, including rheumatologists, admit to using a “gestalt” method of assessing rheumatoid disease activity. Since there are no reliable methods to visibly assess disease activity, some have spent decades developing reliable patient outcome measures; however, most clinics do not use them.
- Medical professionals frequently rely on resources that are incomplete or include errors about RA.
A little bit of digging can lead to correct information on almost any issue relating to RA; however, with no one to represent patients’ needs, the various inconsistencies have persisted without being addressed. The RPF is bridging these gaps.
In November 2011, the RPF presented its first exhibit at the annual meeting of the ACR in Chicago. About a dozen patients traveled from around the country to talk with doctors, nurses, researchers, and industry representatives about patient needs. The RPF published and distributed two scientific posters (referencing previously published research) presenting information critical to patient care. Another central component of the exhibit was the groundbreaking video, The Faces of Rheumatoid Disease, in which patients explain what they need from their rheumatology care.
2012: The Next Steps
Patients cannot deny their experience, but when they are told that their version of the facts is not credible, they tend to become quiet. We have seen this happen with RA, a disease which historically involved much secrecy and silent suffering. The RPF is uniquely able to present the patient viewpoint since we know it first-hand. As we educate and advocate, we will help medical professionals improve patients’ lives.
The needs which the RPF must address are apparent and numerous, but a principal means of improving patients’ lives will involve improving their medical care. Here are a few ways we know we can help:
We can increase understanding of rheumatoid disease;
We can participate in the design of research that is significant to patients;
We can promote accurate up-to-date research;
We can endorse good medical care and good doctors; and
We can expand resources for investigators.
At the close of the 2010 ACR meeting, I returned to my hotel room and recorded my thoughts. In that unrehearsed video, I said, “Next year, the ACR meets in Chicago. I don’t know how many other patients could be there, but I know I’ll be there. And I don’t believe that there will ever be another ACR (meeting) without a patient voice.” At that point, I turned off the camera and cried at the realization that history had been altered, thinking of how much we could do to help patients. In 2011, a dozen RA patients represented the patient voice at the ACR. I spent the final evening of the meeting with other patients planning next year’s RPF presentation. I was more surprised than anyone at how far we had come so quickly. And yes, I cried.
- Young K. Cricoarytenoid arthritis in rheumatoid arthritis patients. Healthcare Professionals Live. December 14, 2009. Available at: http://www.hcplive.com/articles/cricoarytenoid_arthritis_in_RA. Accessed January 1, 2012. ↩
- Kolman J, Morris I. Cricoarytenoid arthritis: a cause of acute upper airway obstruction in rheumatoid arthritis. Can J Anaesth. 2002 Aug-Sep;49(7):729-32. ↩
- Shah,RK. Acute Laryngitis. Medscape. July 22, 2011. Available at: http://emedicine.medscape.com/article/864671-overview. Accessed January 1, 2012. ↩
- Causes of Laryngitis. Right Diagnosis. Available at: http://www.rightdiagnosis.com/l/laryngitis/causes.htm. Accessed January 1, 2012. ↩
- Rheumatoid Patient Foundation. The Faces of Rheumatoid Disease .December 19, 2011. Available at: http://www.youtube.com/watch?v=BaUkvTScQ6Y&feature=channel_video_title. Accessed December 28, 2011. ↩
- Young K. Rheumatoid Arthritis Patient at American College of Rheumatology ACR 2010 . YouTube. November 12, 2010. Available at: http://www.youtube.com/user/KellyRAWarrior#p/u/21/zCUYmzoJK28. Accessed December 27, 2011. ↩
Copyright: © 2012 Kelly Young. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.