3/28/2017 by Share Your Story

Myasthenia Gravis: Patients battle insurance companies to access right treatment


A Patient’s Guide to Myasthenia Gravis

After three and a half years on the right asthma medication, myasthenia gravis patient Paula McGinnis was denied her prescription.

The reason: a new step therapy policy.

“If my asthma is not controlled, then I get MG weakness including the diaphragm,” Paula shares with Conquer MG. “I went through several inhalers when I first got asthma in 2008 and failed most of them. I know what road I’m headed down if I have to start changing my asthma medication.”

Myasthenia Gravis, known simply as MG, is a type of muscular dystrophy that impacts the voluntary muscles in the body. It commonly interferes with limb use, swallowing, talking and eye movements. The weakness associated with MG is worsened when the muscles are used thus limiting the amount of activity MG patients can perform before becoming debilitated.

An autoimmune condition, MG causes the body to treat a certain part of itself as a foreign invader. In the case of MG, the immune system attacks the receptors of the neurotransmitter “acetylcholine”, thus interrupting communication between brain and muscle.

There are treatments, which can help minimize the debilitating effects of the disease. “With current therapies,” explains the National Institute of Neurological Disorders and Stroke, “most cases of myasthenia gravis are not as ‘grave’ as the name implies. In fact, most individuals with myasthenia gravis have a normal life expectancy.”

But there’s a catch: these advancements are only for those patients who gain access to the right treatment. A startling number of patients living with Myasthenia Gravis aren’t getting access to the care they need to extend their life.

Many patients living with Myasthenia Gravis, such as Paula, must battle restrictive insurance policies to gain access to the treatments prescribed by their doctor. In some cases, patients must battle even if they’ve been on the same treatment for years.

“Doctors have just have come to the conclusion that it’s easier to do what insurance wants rather than to fight for their patients,” she explains. “My perseverance has helped me become my own advocate against the healthcare system.”

As with so many rare diseases, patients living with Myasthenia Gravis lose any time health care becomes about the numbers. Rather than provide patients with the treatment they need, insurance companies force patients to go through step therapy. They know some patients won’t bother to fight. It’s all a part of the movement in health care towards cost-cutting and value frameworks.

For most patients, the thought of fighting your health insurance company is daunting. But, we’re not powerless. Regardless of where you live or which insurance roadblock you face, every patient has rights to fight back.

How to Fight Insurance Denial of Treatment for Myasthenia Gravis

To help get you started, Aimed Alliance has launched “Know Your Health Insurance Rights” — a website that offers specifics steps to take if your insurer improperly delays or denies your coverage. That can include: filing an appeal directly with the insurance company, requesting an outside review by an independent third party, or filing a complaint with the insurance commissioner or attorney general in your state.

If your insurer denies your claim, you have the right to an internal appeal. This means you can ask your insurer to conduct a full and fair review of its decision. To appeal the denial, you should do the following:

  • Review the determination letter. Your insurer should have sent you a determination letter to tell you that it would not cover your claim. Review this document so you can understand why your insurer denied your claim and how you can appeal the denial.
  • Collect information. In addition to the determination letter, collect all documents that your insurer sent to you, including your insurance policy and your insurer’s medical necessity criteria. “Medical necessity criteria” refers to your insurer’s policy for determining whether a treatment or service is necessary for your condition.
  • Request documents. If your insurer did not send you the determination letter, your policy, the medical necessity criteria, or instructions and forms for filing an appeal, call your insurer and request these documents.
  • Call your health care provider’s office. Contact your health care provider’s office to ask for help with the appeals process. Someone in his or her office might help you fill out the forms to request an appeal and draft a strong appeal letter.

Myasthenia Gravis: Signs and Symptoms

Your face is sore. Your throat feels weak, a sensation you’ve never quite been able to describe to someone else. It comes with a lingering fear that food is going to get caught in your throat, so you slow down, losing your appetite.

Your eyes droop. Your lips aren’t doing what you want them to. You are exhausted, frustrated, and just lifting your arms feels like you are carrying around blocks of concrete.

Myasthenia Gravis: Research and Innovation

Among some of the exciting developments in the field of Myasthenia Gravis is the work of Dr. Jon Lindstrom, the Trustee Professor in Neuroscience at the University of Pennsylvania. His pioneering work revolutionized our understanding of MG as an autoimmune disease. In just the past two years, his team has discovered that six weekly treatments could prevent MG symptoms for at least 6 months.

“We are developing a therapy for MG that will specifically inhibit the autoimmune response that causes MG, thereby avoiding side effects of general immune suppressive drugs,” he explains of his work.

Lindstrom’s pioneering research is in danger of being canceled due to funding issues. His lab faces imminent shutdown without funding of his current NIH grant request.

“We think our therapy will be safe and effective and revolutionize therapy for MG,” explains Dr. Lindstrom, the Trustee Professor in Neuroscience at the University of Pennsylvania. “But, if we do not get support to continue our work, no one will ever know.”

Learn More: Myasthenia Gravis Foundation of America

The Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis. MGFA serves patients, their families and caregivers through a network of support groups and programs.

Jim Sliney, Jr. is a freelance writer/editor and a student at Columbia University where he studies Creative Writing. He is a Registered Medical Assistant and writes educational and advocacy articles for patients with rare and under-served diseases. Jim volunteers for G-PACT.org where he serves on the board of directors and as Newsletter Editor. He is a native of the Bronx with strong country roots and, like most writers, is working on “a novel”. Connect with Jim on LinkedIn or follow him on Twitter.


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