I was diagnosed with multiple sclerosis in 2012, and thanks to “step therapy” requirements by my health insurance company, I still have not been able to take the medication my doctor believes will best control my symptoms and disease progression.
It all started shortly after I graduated law school. I woke up one morning with such extreme vertigo that I had to be carried to the hospital.
The doctors initially thought I had a stroke, then were suspicious I had a brain tumor.
The next symptom I developed impacted my eyesight, and I finally heard the diagnosis doctors had been searching for: “Sheldon, you have MS.”
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Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body.
Symptoms vary from person to person and range from numbness and tingling to blindness and paralysis.
Immediately following my diagnosis, my neurologist prescribed an oral MS disease-modifying drug that had been recently approved by the Food and Drug Administration.
Unfortunately, my health insurance company refused to authorize my doctor’s first choice for treatment and required me to try and fail on an older, injectable drug before they would cover the oral therapy.
We appealed the step therapy requirement but were not successful.
The first injectable drug I tried came with the side effect of severe flu-like symptoms. For 10 weeks, I had fever, chills and nausea — every symptom associated with the flu.
Eventually it was so bad that I could no longer go to work, and both my doctor and I knew that I had to switch medications.
Unfortunately, I had not been on an injectable medication long enough to switch to my neurologist’s first choice for me, so I started another injectable medication.
I am still taking that injectable drug. It has prevented a major relapse in my MS, but it has not effectively managed my disease progression.
Since my diagnosis and even while on the medication, I have lost function in my right hand, right arm and most recently my right leg.
I now walk with a limp on top of the incredible fatigue and weakness often associated with MS.
In addition to not effectively preventing disease progression, the injections also have side effects.
Every injection is painful, and I develop hard, raised welts that can last for weeks before eventually fading to a bruise.
These injections also cause muscle atrophy at the injection sites, especially in my stomach and legs. That means I lose muscle mass around the injection site and am running out of unaffected areas of my body to give myself the shots.
My hope is to eventually switch to the drug my doctor believes is the best choice for me, but there are risks and costs associated with each new drug.
My wife and I recently had a baby, and we have not been able to afford the deductible for an MRI and extra appointments that would be required to switch drugs.
I do not want to have to put my body through the unnecessary stress of shots and severe side effects just because my insurance company refuses to cover the drug my doctor knows is best for me.
This year, state Sen. Kelly Hancock, R-North Richland Hills, and Rep. Greg Bonnen, R-Friendswood, have introduced identical bills in the Texas Legislature that would ensure that step therapy protocols are based on sound medical research and practice and create a clear process to protect patients from being required to try or stay on a step therapy medication if is not in their best interest.
The bills would also prevent patients who are stable on their medication from being forced to try a new medication if step therapy protocols are added as a requirement and prohibit insurers from requiring patients to fail a medication more than once, even if the patient switches to a different health insurance company.
These commonsense protections are good for all Texans.
This legislation will ensure that consumer protections for step therapy are transparent and reasonable for Texas patients and their healthcare providers.
You’ve heard my story. Now let the members of the Legislature hear yours.
Sheldon Metz of White Settlement is a non-practicing attorney and teacher.