Arthritis Foundation Advocate Testifies in front of FDA

Arthritis Foundation Advocate Testifies Before U.S. Food and Drug Administration

Use of her hands meant everything. It’s how she saved lives. It’s how she provided for her family.

Susan Behen, MD, trained in general surgery at Johns Hopkins Hospital and held a specialty fellowship in colon surgery. For years she used her hands to perform all sorts of abdominal and laparoscopic surgeries. Then came the diagnosis – psoriatic arthritis.

Getting a correct diagnosis was difficult. She saw a hand surgeon and physical therapist who prescribed exercise, splints and injections for tendinitis. It wasn’t until she saw a rheumatologist before things got better.

For Dr. Behen, being diagnosed with arthritis meant the beginning of the end of her surgery career – a career that she absolutely loved. Her arthritis treatment provided a dramatic response, relieving her of pain and inflammation, however, the damage to her joints and tendons had caused too much weakness. She could no longer endure the demanding and long hours of surgery.

Determined to fight arthritis and help others who are living with the disease, Dr. Behen joined the Arthritis Foundation’s Advocate program and attended the 2016 Advocacy Summit in Washington, DC. There she learned about issues affecting people’s access to care. Dr Behen also met with members of Congress to ask for their help in increasing the number of pediatric rheumatologists, and for the creation of a dedicated Department of Defense research budget to address the unusually high prevalence of arthritis in the U.S. Military.

This afternoon, Dr. Behen will take her Advocate skills to an entirely new level. She will testify before the U.S. Food and Drug Administration’s Arthritis Advisory Committee in support   of a biosimilar medication for Humira.

Biosimilar mediations are similar but not generic versions of biologic drugs. If approved, the biosimilar drug for Humira will provide people living with arthritis another treatment option at a potentially lower cost.

“I’m very pleased and excited to testify before the FDA,” said Dr. Behen. “It’s very important for people with arthritis to tell their story, helping people who are in decision-making positions better understand the challenges we face, but more importantly, how they can knock down barriers and improve access to care.”

Advocates are our most powerful voice against laws and regulations that create barriers to care for people living with arthritis. Our annual Advocacy Summit is a two-day conference that invites people from across the country who are interested in participating in the legislative process. Participants learn how best to interact with elected officials and educate these decision makers on the needs of people with arthritis. Mark your calendar and plan to attend the 2017 Summit on March 6-7 in Washington, DC.

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3 thoughts on “Arthritis Foundation Advocate Testifies Before U.S. Food and Drug Administration

  1. Please let me know how I can get involved to do the same for the drug enbral! Enbral costs people thousands of dollars of year and I had to go on Medicaid to revive it. Enbral is a miracacle for me, but I don’t know how I will afford it long term. Without it I may go on disability. With it, I can accomplish great things for the arthritis community, one of my biggest aspirations.

  2. 7 years ago my life as I knew it was over. I was diagnosed thru a rheumatologist with RA and he put me on the biological Remicade and methotrexate. Within 3 months I was getting pustular blisters on my palms, bottom of my feet and scalp losing large chunks of hair. I went of Remicade and metho and the dermatologist put me on stellar a. I was paying 900 a month for major medical but it did not pay for apps or Meds. The dr. Somehow offered it for free. The next 2 years I ran a low grade fever and when I got on Medicare I went to Mayo in Scottsdale. After 28 blood labs they could not diagnose the name of the arthritis only that it was in the sero negative category. It was determined that the Remicade and metho had started an another auto immune disease, pustular psoriasis. I came home and the rhematologist put me on what they call “the big guns”. Retuxin every 6 months 2 five hour Iv’s. So far it is helping a lot. I am not sure why I am writing this. It has been my journey and I am still on it. It is a terrible disease and I do not know where it is going. The recent thing is 3 heart stints and they think it is the arthritis closing off my arteries.

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