Spotlight on Debra Lappin - Patient, Advocate & Volunteer

Calling upon her background in law and policy, Ms. Lappin chaired the national government affairs committee, leading the successful advocacy campaign to have an institute created at NIH with a primary focus on arthritis: the National Institute on Arthritis and Musculoskeletal Diseases. In the late 1980’s she joined the Board of Trustees; by 1996 Ms. Lappin became our national chair, leading the organization through the celebration of its 40th anniversary. During her tenure, the Arthritis Foundation entered into its first public private partnership with the NIH, contributing $1M to launch a $7 M federal investment in the North American Rheumatoid Arthritis Consortium, dedicated to identifying the gene(s) that triggered susceptibility to rheumatoid arthritis.
Volunteer work gave meaning to Ms Lappin’s journey and brought a valuable return to the Foundation. Ms. Lappin says “being involved with the Arthritis Foundation allowed me to create a new path forward in my life as I learned to live with a very serious disease. Never could I have imagined that one day I would be able to return to work and in doing so would draw on every experience I was offered as a volunteer with the Foundation.”
In 1999, Ms. Lappin began taking one of the first biological drugs brought to market and the change in her health was nothing short of the miracle everyone with arthritis hopes for. Ms. Lappin returned to the work force in 2000. Today, she is counsel to the law firm of Faegre Baker Daniels and leads the Health & Biosciences consulting practice at FaegreBD Consulting. She is dedicated to advancing health and science policy, with a large part of her practice dedicated to working with patient groups to advance their missions in relation to the NIH, the CDC and the FDA. She says, “I consider myself one of the most fortunate people alive. The work with the Arthritis Foundation over two decades gave me purpose, and allowed me to grow as an individual, despite the devastating illness that I was battling. Today and every day, I get to give back.”
Currently Ms. Lappin is the Arthritis Foundation’s representative on the Accelerating Medicines Partnership (AMP) which is a novel private-public partnership with the NIH, the FDA, 10 biopharmaceutical companies and multiple non-profit organizations. The purpose of AMP is to transform the current model for developing new diagnostics and treatments by identifying and validating promising biological targets for therapeutics. The ultimate goal is to increase new diagnostics and therapies for patients and reduce the time and cost of developing them. AMP focuses its efforts on three disease areas, one being autoimmune disorders of RA and lupus. We chose Ms. Lappin to represent us because she isn’t a scientist – she’s a real person with a real disease. Including the patient voice is vital in creating the next generation of diagnostic and treatment solutions. Her voice is the voice of our constituents, your voice!
We asked Ms. Lappin if she had any words of wisdom for someone newly diagnosed with arthritis. She said -
- Take advantage of science and the recent medical advancements – be bold in combatting arthritis, don’t let it win.
- Insist on a partnership with your doctor – be empowered in that relationship and make it work for you.
- Own your disease and your life; don’t let the disease own you.
Thank you Ms. Lappin for everything you’ve done and everything you are doing now. You are truly a Champion of Yes!