Restoring the Patient’s Voice Act will provide necessary guardrails to consumers

I love being a gastroenterologist, a specialist who cares for patients with digestive disorders. Every week, some of the most challenging patients I see are suffering with Crohn’s disease or ulcerative colitis — inflammatory bowel diseases (IBD) that cause chronic, painful inflammation of the digestive system.

I started my career in the 1980’s when therapy for IBD consisted of steroids and immunosuppressive medicines with potentially terrible side-effects. Hospitalization and debilitating surgeries were not uncommon. 

Fortunately, I can now prescribe a spectrum of effective medications to address the diarrhea, bleeding and abdominal pain that can be so severe that IBD patients stop working or can’t attend school. Research is making strides toward understanding the cause of these illnesses and the newer generation of medications allow patients to avoid hospitalization, surgery, and to live more normal lives.

Patients rightly expect me to use my best judgement when deciding what medications to prescribe. Unfortunately, insurers often mandate that I “step” a patient through medications I know will not work before paying for the drug I judge to be most effective.

The newer medications are more expensive, a lot more expensive, but when alternatives are more dangerous or unlikely to work, and the patient’s disease is progressing rapidly, then we prescribe these newer options.

These insurance step therapy protocols are anathema to physicians who pledge to do no harm. While it may seem logical to start at medication A, then move to medication B and so forth, I can often assess a patient’s symptoms and medical history and know that medication G is the best place to start.

But instead of prescribing a medication that I judge best, from a clinical standpoint, insurance mandates that a patient fail first on what they judge, from a cost standpoint, to be the best initial therapy. The patient usually has no recourse.

That is why I support the Restoring the Patient’s Voice Act , legislation introduced by Reps. Brad Wenstrup (R-Ohio), and Raul Ruiz (D-Calif.), both physicians. The bill provides a clear and timely appeals process when a patient has been subjected to step therapy.  

The American Gastroenterological Association, the largest society of digestive health physicians, supports this bill because it establishes a process for physicians to appeal a step therapy protocol for their patients. It also grants exceptions to step therapy in critical circumstances and expedites care by requiring a timely decision for appeals — three days, or 72 hours, or within 24 hours, if life threatening. This

bill is also supported by many other patient advocacy organizations, including the Crohn’s and Colitis Foundation.

Although step therapy is used by insurers as a cost-containment mechanism, it does not save money in the long run. Unchecked, inflammation can progress rapidly. Patients often suffer complications during the wait for the right medication. These complications can require additional physician visits, emergency department visits, hospitalization and even surgery.

The physical costs to patients are significant. Their immune system mounts an attack on their digestive tract. Once the IBD patient’s immune system is “turned on,” it does not know how to properly “turn off” at the right time. As a result, inflammation damages the intestine and causes the symptoms of IBD. The damage can lead to scarring and permanent loss of normal functioning.

This issue hits close to home for me, not only because I have a responsibility to my patients, but I feel a responsibility to my family. My younger sister has ulcerative colitis, which was diagnosed at age 31 during her third pregnancy. And my son, during his second year of college, began experiencing colitis problems so severe he could not attend classes and dropped out of school. He is now 31 and his illness is controlled, thanks to timely care and access to the right medications.

The gastroenterology community supports the Restoring the Patient’s Voice Act, because it will help all patients get the medications they need quickly. This is ideal, because the sooner immune system dysfunction is controlled, the sooner the patient can return to a more normal life and avoid permanent complications.

Medical advances continue to provide me, as a gastroenterologist, more options to improve a patient’s quality of life and treat IBD patients in a more personalized way. Restoring the Patient’s Voice Act will give me and my patients the necessary guardrails to appeal step therapy protocols, if medically appropriate, and ensure that my IBD patients receive the right therapy at the right time.

Michael L. Weinstein, MD, is writing on behalf of the American Gastroenterological Association and the Digestive Health Physicians Association.