AUSTIN, Texas — Kathleen Arnsten, president and chief executive officer of the Lupus and Allied Diseases Association, takes 48 pills a day for multiple autoimmune diseases. After having shingles and developing glaucoma, she was given a sample medication that quickly lowered the pressure in her eye. However, when she went to fill her prescription, she was told that the eye drops were under a “step edit” and she would have to fail two other kinds of eye drops before she could get her prescribed product.
In Arnsten’s case, step therapy — or the requirement by some insurers that patients first fail less-expensive proven treatments before a costlier one is given — cost her the vision in her right eye.
The other eye drops “totally corroded the surface of my cornea” because of an allergy to preservatives, and left her ineligible for cornea transplantation, she told Medscape Medical News.
Step therapy ties the hands of providers who treat patients with complex health issues and forces some patients to undergo inappropriate treatment, said Arnsten, who spoke to providers here at the National Infusion Center Association (NICA) 2019 Meeting.
“I ask you to turn your emotion and outrage and anger into action, especially on payer-access issues, because they are hurting people like me and your patients,” she said.
Providers need to know that their patients are counting on them to be advocates for them, she added. “Please understand the faith and hope we have in you.”
Without advocacy, providers leave the decisions up to others, said Brian Nyquist, MPH, executive director of NICA.
When decision-makers are proposing reimbursement reform and they don’t hear from providers that restrictions will jeopardize their ability to treat patients, “they’re going to think they have fixed the perceived problem that we’re spending too much on medical-benefit drugs,” he explained.
Earlier this year, NICA expressed concern about step therapy in a letter to the Centers for Medicare and Medicaid Services, saying that payers should consider step-therapy drug policies only “when the cost of failure is low, the time to fail is short, and the clinical risk of failing preferred drugs is low.”
Another key issue for infusion-center and other providers is nonmedical, formulary-driven treatment switches, which can eliminate coverage of a patient’s medication or increase the cost sharing periodically to steer patients toward a less-expensive drug, often interrupting plans of care.
“When we decide the best treatment, it’s a shame that the first question after that is, ‘What’s your insurance company and then, what’s the latest formulary?,’ said Madelaine Feldman, MD, a rheumatologist in private practice in New Orleans, who is president of the Coalition of State Rheumatology Organizations (CSRO).
“It certainly takes away from shared decision-making,” she pointed out.
How to Make Your Voice Heard
Feldman and Arnsten have both testified before Congress on access to treatment, but they emphasized that advocacy can start in much smaller ways — everything from talking with a neighbor, to posting information about an issue in a waiting room or on social media, to making a case to state legislators.
Numbers matter when it comes to making your voices heard at the state level, said Adam Taliaferro, JD, from state advocacy and alliance development at Bristol-Myers Squibb, who is a member of the New Jersey General Assembly.
“In my office, if we get 15 tweets on an issue, we start looking into it,” he explained, adding that even if legislators don’t respond to the posts or tweets “they’re seeing them.”
It is also important to get to know who is on a legislator’s staff and who is reading the white papers and making recommendations to the legislator and to build a relationship with the office, he said.
And recognize that patient stories have power. Lobbyists present facts and figures, but legislators can easily tune them out. However, “when a patient tells his or her story, all eyes are on that patient,” he said.
In addition, when likeminded groups with a unifying message join forces, their strength increases. It is key to coordinate advocacy efforts among numerous rheumatology organizations, such as NICA, the American College of Rheumatology, CSRO, and lupus group, said Feldman.
Arnsten, Feldman, Taliaferro, and Nyquist have disclosed no relevant financial relationships.
National Infusion Center Association (NICA) 2019 Meeting. Presented June 21, 2019.