Richard Seiden, retired attorney and patient advocate, is a member of the IVI Patient Advisory Council, where he provides valuable insight into IVI’s work. In a recent conversation, Richard shared how psoriatic arthritis has impacted his life and why he works with IVI to center the patient within the health technology assessment process.
Richard, thank you so much for taking the time to speak with us today. Can you begin by explaining the background of your medical journey?
My symptoms first started as a young adult and led to a series of diagnoses since that time. During my first year of law school in 1972, I experienced severe scalp flaking. Upon visiting a community dermatologist, I received a diagnosis of psoriasis at the age of 23. In 1976, after overexerting myself during a law firm tennis tournament, my left knee was left stiff and swollen. Following x-rays, AN orthopedist referred me to a rheumatologist, and in my late 20s I was diagnosed with psoriatic arthritis. Between 1999 and 2018, my knees, both hips and both shoulders were replaced. In 2012, after taking epidural cortisone injections into my lumbar region to reduce leg pain, my blood glucose score skyrocketed, and I was diagnosed with diabetes.
In 2021, I began to experience severe pain in my left thigh and hip and was diagnosed with hip bursitis. This resulted in 18 months of suffering and walking unsteadily with a cane, until I finally saw a physiatrist, who diagnosed it as greater trochanteric pain syndrome. An MRI confirmed a muscle tear in my gluteus minimus and an adjoining tendon, with the pain being exacerbated by spinal stenosis in the lumbar region.
Richard, you were fortunate enough to have minimal economic and professional impacts, how did arthritis effect your personal life?
In my late 20s, I was married and working as an associate at a law firm, and a few years later my children were born. Psoriatic arthritis had a significant impact on my family life. With limited mobility, I was unable to play sports or even just get down on the ground and interact with my kids. My wife assumed most of the household chores, including the heavy lifting. Arthritis continues to impact my personal life, and I’m unable to lift or carry my infant grandchildren.
Have you had any professional or economic impacts from your medical diagnosis?
In this way, I have been lucky. I’ve had minimal economic impacts from my recent hip and thigh pain – my physical therapy was covered until I reached Medicare limits, but I had enough savings in an HSA account to pay for out-of-pocket costs, including a platelet rich plasma treatment. As a retiree, I had planned for reduced income and there were no travel expenses to obtain medical care. While working, my law firm’s health insurer had never balked at any of my treatments or prescribed medications, and since I retired, I have been adequately covered by Medicare and supplemental policies. As a partner, my law firm was exceptionally accommodating with my post-surgical absences from work, and I was able to work remotely. After my shoulder replacements, they arranged a driver to drive me to and from work.
Did you experience any mental health impacts from your diagnosis?
Fortunately, I am an optimist and realist with a sense of humor. My “darkest hour” was the night after my diabetes diagnosis, when I experienced a major “why me?” moment. It was difficult to witness my father’s quality of life deteriorate with diabetes – dietary restrictions, medical implications, and his eventual death due to complications from diabetes. My current physical situation is frustrating, because I can’t walk or stand for more than 10 minutes and it’s incredibly self-limiting when it comes to activities I used to enjoy, such as attending concerts and lectures, visiting museums, and sightseeing.
How and why did you get involved with IVI?
For several years, I served on an ICER panel and grew increasingly disappointed with their reliance on quality adjusted life years (QALY), which clearly discriminates against people with disabilities or serious chronic conditions. When Richard Xie, the director of research at IVI, spoke during a video conference about the patient-centered nature of IVI’s work, I thought it was much more consistent with my personal philosophy and goals. I joined IVI and the Patient Advisory Council (PAC).
Why is it important to center the patient in health technology assessment (HTA)?
HTAs must consider the outcomes that patients experience when using a medication or treatment prescribed by their physician. As a patient representative on the patient reported outcomes working group of the American Academy of Orthopedic Surgeons, I believe that pre-surgical patient questionnaires must be answered by the patient, reviewed by the surgeon, and become a primary source of information for the shared decision-making before proceeding to an orthopedic surgery.
Additionally, I participated on a patient panel evaluating 2019 proposed ACR/NPF guidelines for the treatment of psoriatic arthritis with the National Psoriasis Foundation and American College of Rheumatology.
In all my involvement, I try to put my experience as a patient at the center of my engagements.
Richard, as a patient, why do you think cross-stakeholder collaboration is important?
Cross stakeholder collaboration is important because healthcare decision-making must consider a variety of perspectives for a complete picture, including patients and caregivers, clinicians, researchers, drug, and device manufacturers, and both commercial and government payers and intermediaries. IVI represents a neutral forum where all perspectives can be voiced, heard, and considered. Anyone interested in understanding and assisting in policy making decisions relative to societal healthcare could make a meaningful impact as a participant in IVI conferences and deliberations.
Thank you, Richard. We are so appreciative that you took the time to sit down with us. By sharing your experience, you are reiterating the importance of centering the patient in health technology assessment.
