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Conference Coverage

Advocating for Rheumatology Patients to Improve Care Access

In a session at the National Organization of Rheumatology Management’s 2021 Annual Meeting, speaker Brian Nyquist, president and CEO, National Infusion Center Association (NICA), presented to attendees on the importance of driving positive change through patient advocacy and the challenges associated with specialty pharmacy mandates.

Mr Nyquist began by explaining the differences between three primary drug acquisition models:

  • Buy-and-bill: the provider pays for the drug and the distributor ships the drug to the provider

  • White Bagging: the insurer pays for the drug and the specialty pharmacy ships to provider

  • Brown Bagging: the insurer pays for the drug and the specialty pharmacy ships the drug directly to the patient

The significance of each of these acquisition models lies primarily in the assumed risk, which Mr Nyquist emphasized to attendees, “If you’re brown-bagging, stop. I can’t express how much risk there is in this area.”

Brown-bagging restricts flexibility by having no assurances of pedigree, appropriate storage and handling, or safety. Both white-bagging and brown-bagging carry the risk of change in dose or medication which can cause waste and increase delays. Mr Nyquist also noted that specialty pharmacies typically do not run cost-share assistance before billing the patient for both of these models.

Buy-and-bill acquisitions offer the most flexibility and providers take full ownership of a drug, and infusion centers maintain inventory as a whole, creating much less risk.

Further challenges lie in the form of specialty pharmacy mandates, explained Mr Nyquist, under which insurers require the acquisition of one or more medications through specialty pharmacies.

These mandates present a number of challenges, specifically for rheumatology patients. The “core” issue being infusion center economics, volatility in the reimbursement landscape, and associated waste/cost/delays, said Mr Nyquist.

For example, when a specialty pharmacy insists on sending an entire loading dose at once and the treatment ends up not working for the patient, the remaining doses often go bad before a patient can use them, thus creating waste and costing the health care system countless dollars.

Mr Nyquist shared an anonymous quote from an infusion center director: “Each time we waste a specialty pharmacy drug, it costs the health care system thousands of dollars, and the patient —who is already struggling with affordability—has paid for a drug they didn’t receive in addition to the drug they do receive.”

Navigating these complicated mandates can also cause a patient to have delayed access to treatment which causes added burden.

“When patients can’t get their medications due to the restraints of inefficient systems, patients suffer,” said Mr Nyquist.

The key to solving these challenges is resisting specialty pharmacy mandates and advocating for what is best for patients, emphasized Mr Nyquist. He offered ways providers can advocate now including:

  • standing up for your patients and your practice;

  • championing access to care in cost-effective settings;

  • support clinical stability for your patients;

  • understanding when to be reactive vs proactive;

  • collaborating with powers that can make change, like local officials; and

  • help your patients avoid restrictions, disruptions, or delays in accessing care.

Using the analogy of a squeaky wheel, Mr Nyquist underscored that the squeakiest wheel gets the grease—or those in need will get the help/change they need—so in order to make lasting, positive change, providers must prompt engagement from stakeholders, create meaningful human connection with patients and stakeholders, conduct outreach, and sustain these efforts to create momentum.

The greater the magnitude of these issues the more likely they are to be addressed,” concluded Mr Nyquist.

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