Patient Advocacy a Vital Aspect of Clinical Practice

Laura Arenschield

November 11, 2019

ATLANTA — Twenty years ago, Kim Schofield was a single mom with a successful career. She was active in her community and her church, she drove her daughter to dance practice, and she'd just bought a house near Atlanta.

She had never heard of lupus.

That changed one day when her left eye turned red and her vision got blurry. She went to her ophthalmologist, who sent her to a primary care physician, who, after evaluating her joints, sent her to a rheumatologist.

The rheumatologist diagnosed Schofield with lupus, but offered her little support. "He basically handed me a brochure from the Lupus Foundation and a prescription for about eight medications," she explained here at the American College of Rheumatology (ACR) 2019 Annual Meeting.

"I was left wondering how I was going to tell my daughter, who was just 8 years old at the time, that I had this disease and that I might not be there for her, that I might not survive," she said.

The disease, which often caused pain, drained her energy; one day when she was driving home from work, she fell asleep at the wheel of her car.

"I knew something had to change," said Schofield. She told her bosses that she needed to take some time off, but because they couldn't see her disease — "I didn't look sick on the outside" — they didn't believe that she was really ill and they fired her. When she lost her job, she also lost her health insurance.

"I had no way to support my daughter, no way to support myself," she said. At the time, lupus was not covered by the Americans with Disabilities Act.

In 2001, she started a support group for people with lupus. She connected with the Georgia chapter of the Lupus Foundation. She saw how people needed to share their stories, but she also saw a gap.

"We were giving people space to be heard, but we were not having any impact. We weren't making real changes that would protect them," she said.

Need for Change

So Schofield started calling Georgia's state legislators and visiting the Georgia State Capitol. She started Lupus Awareness days at the statehouse, and convinced a state legislator to add a line to the budget for lupus awareness and educational funding. She connected with a lupus research team at Emory University, eventually going to work with them as an engagement coordinator.

And in 2017, she ran for a seat in the Georgia House of Representatives — and won.

Schofield is now working on legislation that she hopes will reduce or eliminate surprises in medical billing for patients and on a bill that she hopes will add job protections for people when they get sick.

It's time to wake up; political lines are bleeding into healthcare. They are affecting your patients.

"I hope to inspire you to not sit on the sidelines of advocacy, but to get in the game," she told those gathered to hear her speak. "It's time to wake up; political lines are bleeding into healthcare. They are affecting your patients. It is time for the medical profession to embrace advocacy as a new part of medical practice."

Sam Lim, MD, who was moderator at Schofield's talk, said that he wanted physicians, researchers, and students who attended the ACR to hear Schofield's story, in part, to encourage them to become more vocal advocates for their work and their patients.

"To me, it is an important part of caring for my patients," Lim told Medscape Medical News. "As physicians, we can give our patients all the medications we want, but when they leave our offices, they are going back into the world, the environment, that might have made them sick or might be interfering with their wellness. Being an advocate intertwines with the healthcare we provide them."

Schofield's talk was inspiring, said Avery LaChance, MD, a dermatologist who works with patients with autoimmune disease.

"As physicians, we need to be having our voices heard and we need our patients to be having their voices heard," said LaChance, who is director of health policy and advocacy at Brigham and Women's Hospital in Boston. "If we aren't at the table, someone else is. Policies are a powerful tool to help improve outcomes for our patients or to improve their access to healthcare."

Schofield said advocacy gave her a purpose and set her life on a better path.

"I did not deserve to lose my job and my income because I did not look sick," she said. "And I don't want that to happen to anyone else."

American College of Rheumatology (ACR) 2019 Annual Meeting. Presented November 10, 2019.

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