Advocacy strategies: Leveraging patient testimonials, physician expertise, and Google



When an insurance coverage snafu threatened to take away a vital infusion drug for one of her patients, Julie Baak discovered that writing a letter wasn’t enough. Simponi Aria (golimumab) is the least expensive of all rheumatoid arthritis drugs for infusion, and at only six infusions a year offers a better experience for patients when compared with more expensive drugs like Humira (adalimumab), said Ms. Baak, practice manager at the Arthritis Center in St. Louis.

Julie Baak, practice manager at The Arthritis Center in St. Louis

Julie Baak

United Healthcare had drafted, then retracted, policy changes affecting and delaying access to RA drugs like Simponi Aria. Ms. Baak’s patient thrived on this drug after failing with others. UHC “kept pointing the finger at the employer, a self-funded plan,” she explained. Once correspondence efforts between the employer and payer fell through, she called a local news reporter, arranging an interview between Steven Baak, MD, the office’s medical director, and the patient, who was willing to go on the news. Through a 3-minute news segment, “we got that insurance company to allow us to get coverage for Simponi Aria on the medical side.”

Ms. Baak joined Karen Ferguson, Nilsa Cruz, and Madelaine A. Feldman, MD, at the Coalition of State Rheumatology Organizations 2020 State Society Advocacy Conference Virtual Meeting to discuss the power of advocacy in rheumatology, and impart strategies for enabling change. The Simponi Aria example underscores the importance of media and social media, Ms. Baak said. “When people do the wrong thing, you can bring light to others.”

The news spot on Dr. Baak and his patient mobilized Ms. Cruz to share it with others. “I took that interview and blasted it all over Wisconsin and to my colleagues because they needed to know what the options were for us in advocacy,” stressed Ms. Cruz, practice administrator of Milwaukee Rheumatology Center.

Nilsa Cruz, practice administrator of Milwaukee Rheumatology Center

Nilsa Cruz

Rheumatologists are master problem solvers – the Sherlock Holmes’ of the medical industry, she continued. However, not many insurance companies understand the cognitive value of what they do. “There’s a lack of communication and education,” Ms. Cruz noted. Any advocacy measures calls for research on the topic, the panel stressed. It involves looking through medical and administrative insurance companies’ policies and using Google and social media, such as Twitter, to identify topics and key decision makers, a practice Ms. Cruz favors in particular.

Physicians as reliable sources

You need good documentation to support why you’re doing what you’re doing, advised Ms. Ferguson, practice administrator of Arthritis Northwest, Spokane, Wash. When an issue comes up, she always consults her doctors and her billing staff.

Karen Ferguson, practice administrator of Arthritis Northwest, PLLC, Spokane, Wash.

Karen Ferguson

She recalled when biosimilars first came out, and one of them for Rituxan (rituximab) had not been indicated by the Food and Drug Administration for RA. “And yet, an insurance company was mandating that we use this nonindicated biosimilar,” said Ms. Ferguson, who learned about this from her billing staff. “I went immediately to the doctors and asked how they felt about this, and they said they were uncomfortable,” she continued. Ms. Ferguson found out that 45 states had legislation that prohibited interchangeability with non–FDA-indicated drugs. She was able to show this literature to the insurance company and get the mandate reversed. “One thing that’s so important is to be able to use your physicians’ knowledge and how they really feel and advocate based off of that,” using sound statutes to support your argument, she added.

“Ensuring that patients get the right medications that their physicians deem is important is critical for improved safety and efficacy,” Ms. Ferguson said. Yet, she acknowledged that facing off against an insurance company or a pharmacy benefit manager is often hard to do.

Many practices don’t have a Julie Baak or Karen Ferguson to fight on their behalf, Ms. Cruz noted. In this case, they should look within their state for high-profile advocates. “I guarantee you, every state has one. Practices should be able to reach out to those individuals, or respective state societies, or CSRO,” Ms. Cruz said. Best results are obtained when working through coalitions.


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