For roughly half my life, I have suffered from debilitating joint pain and inflammation that left me drained, fatigued, and, eventually, struggling to walk. At first, no one knew what was wrong with me. Then I was misdiagnosed. Finally, just as I started my sophomore year in college, my doctors told me I had a severe case of rheumatoid arthritis (RA), an incurable, progressive, and ultimately crippling illness. I was forced to drop out of school for a while. For a long time I could not work full time.
That happened more than 15 years ago. Now, after three surgeries and countless medications, I am able to live what resembles a normal life. But my journey to this long-sought destination hasn’t been easy. Even though I have always had health insurance, I have nevertheless spent years battling my insurance company to get coverage for the treatments my doctors said I needed to stay as healthy as I can be.
I trust my doctors to do the right things and prescribe the medications that allow me to live with rheumatoid arthritis. My insurance companies don’t. They insist on “step therapy” instead.
Step therapy is a practice that requires patients to first try and “fail” an insurer’s preferred treatment before being able to access the therapy their own doctors have prescribed. It’s essentially an insurer’s way of saying, “We know more about drug therapy than your doctor and we need to protect you from his or her prescribing the most expensive drug first.” The insurers’ agents who make these decisions, by the way, are not always doctors.
Step therapy once delayed my ability to get effective treatment for more than a year. As a result, the debilitating effects of my disease continued to worsen while I also suffered the side effects of a drug that did not work for me.
As is common for those diagnosed with rheumatoid arthritis, I was first prescribed methotrexate. It did nothing to stop the pain, fatigue, stiffness, and swelling my RA caused, but it did make me violently ill every time I took it, gave me terrible headaches, caused my hair to fall out, and left me with a skin condition that has never been cured. Because methotrexate didn’t ease my symptoms, I was prescribed others drugs for them, including steroids to combat the inflammation caused by RA.
My condition deteriorated so much that I had to drop out of college and move in with my parents in a different state. I was then assigned a new set of insurance agents who refused to approve the medication my doctors prescribed. I had to repeat the methotrexate “failure” all over again.
It took years before I was prescribed a biologic drug that actually helped manage my disease. The toll that time lag took on my body included (but was not limited to) needing three major surgeries on my knees.
So I can sympathize with the millions of Medicare beneficiaries currently enrolled in Medicare Advantage plans who may soon face access issues of their own because of a new policy allowing plan sponsors to implement step therapy for certain Medicare Part B drugs.
It’s a bad policy, lacking even the most basic safeguards to ensure that step therapy policies are used appropriately. It also fails to provide an accessible process for patients to get an exception to step therapy when their doctors deem it necessary.
Insurers use step therapy as a way to control costs. Requiring patients to first try alternative (meaning cheaper) therapies, they argue, cuts down on unnecessary treatments and helps lower premiums. But that line of thinking doesn’t acknowledge that no two patients are alike and that each person’s body responds to treatment in different ways. That’s why treatment must be carefully tailored to a patient’s individual conditions and needs.
Patients with rheumatoid arthritis, for example, often must try multiple drugs before finding the one that works best for them. While this trial-and-error process has long been part of health care, and is often unavoidable, step therapy unnecessarily draws out the process by forcing patients to try drugs their doctors already know will not be effective. And while patients are trying these ineffective drugs, they suffer. This can even cause permanent damage. For those of us with rheumatoid arthritis, as I can personally attest, this policy can mean irreparable joint damage.
The delays caused by step therapy, not to mention other insurance practices such as prior authorization, have forced me to make hard choices about how to get the treatment I need. I’ve split pills and rationed medications, sometimes skipping doses for a day or two. My family and I have spent hours on the phone with insurance companies — once for nearly eight hours straight — trying to get them to reverse their repeated rejections of my rheumatologist’s recommendations. My doctors have written countless formal letters on my behalf and made countless phone calls to my insurance providers. All the while, my condition worsened. For prolonged periods of time I struggled to walk because my knees were so swollen. I had to wear braces on both of my wrists. I even feared I was going to have to leave my job because the pain, fatigue, and physical restrictions were becoming so severe that I did not think I could continue to be productive.
I am not alone in my struggle with step therapy. According to a survey from the Arthritis Foundation, for which I am an advocate, more than half of all patients reported having to try two or more different drugs because of step therapy before getting the one their doctor had originally prescribed. And, like me, nearly a quarter of them had to repeat step therapy when they switched insurance plans.
In short, step therapy undermines doctors’ professional and clinical judgments in the name of protecting insurance company profits and at the expense of their patients.
Congress needs to step in and ask the Centers for Medicare and Medicaid Services to remove this dangerous policy from Medicare. I join a broad coalition of patients and health care providers in urging Congress to pressure the Trump administration to rescind this policy and ensure adequate guardrails are in place to protect patients from insurers’ overzealous use of practices like step therapy, which are designed to bolster their bottom lines at the expense of people in need of effective medical care — the people they’re meant to serve.
Elizabeth Krempley is a patient advocate for the Arthritis Foundation.