One of my biggest fears is fainting and falling onto the train platform of the city’s public transportation system while running errands or on the way to work.  Lately, this fear is becoming closer and closer to reality as symptoms of my chronic health conditions have gotten worse and my insurance carrier, Aetna, is partly to blame.

I suffer from Sjögren’s Syndrome, an autoimmune disease that attacks and damages my moisture producing glands and other organ systems in my body.  Along with complications and damage to my eyes, mouth, joints, lungs, and GI tract, I also suffer from nervous system damage.  Specifically, I suffer from small fiber neuropathy that causes pain and numbness in my legs and dysautonomia.  Dysautonomia is a term for medical conditions that cause a dysfunction of the autonomic nervous system, which controls the “automatic” functions of the body that we don’t think about. These include heart rate, blood pressure, breathing, and temperature control.

Extreme fatigue, sinus congestion, salivary gland pain, jaw pain, dry eyes, dry mouth, ocular migraines, severe joint pain, tingling and numbness in legs and feet, bursitis, involuntary leg movements, nausea, vomiting, acid reflux, fevers up to 101 degrees spiking multiple times a day, night sweats, dizziness, lightheadedness, rapid heart rate, shortness of breath, graying out and fainting.  In the last few months, I have suffered from approximately 30 symptoms daily.

Unfortunately, there is not a “one size fits all” treatment for my chronic conditions.  I see more than ten specialists that work together to create treatment plans that work, however recently those treatment plans have been unsuccessful.  I was receiving risky Rituximab infusions, to help kill the cells in my body that cause inflammation however, my body reacted poorly to each infusion even after receiving a wealth of pre-medications to mitigate a reaction.  Furthermore, after approximately a year of treatment, it seemed that the complications outweighed the benefits.

This is when my rheumatologist decided that another treatment called Intravenous Immunoglobulin Therapy (IVIg), may be the next best course of treatment. IVIg is traditionally used to treat people with immune system disorders and evidence has shown both clinically and anecdotally that this treatment helps with nervous system damage.  This treatment is my one shot at getting my life back, because I have exhausted my treatment options.  Originally this treatment was recommended and prescribed by my neurologist in 2015, however after multiple attempts and a peer to peer physician review Aetna decided to deny this treatment on the basis that they consider it experimental for someone with my conditions.  Now, a second doctor is suggesting this treatment.  We have multiple 10-page research articles as evidence of effectiveness, my extensive medical history of multiple symptoms and surgeries, and the records of hundreds of failed medications and treatments to prove to my insurance carrier why they are in the wrong.  After a peer to peer review and two appeals, the decision holds that Aetna will not approve my IVIg treatment.

Two physician recommendations, multiple research articles as supportive evidence, physical symptoms that have left me homebound and out of work for three months, and the potential of risking my life every time I leave my bed, is not enough for Aetna to approve this treatment.  They approved the Rituximab infusions, which happen to be more toxic than the IVIg.  Without treatment, I will continue to be unable to work, will lose my job and a career that I have worked hard for, lose my apartment, and completely lose my independence at the age of twenty-six.  I am close to having two master’s degrees, have traveled around the world, am a published author, and own a business, but currently am currently function at a quality of life that so poor that it is almost unbearable.  It is ridiculous that someone can be at the point where they are losing the will to live and are at the mercy of an insurance company who won’t approve the treatment that is a chance at survival.

Is this fair?  How bad does my condition must become for a necessary treatment to be approved?  Do I have to continue to let the stress of not being able to get a necessary treatment, wreak havoc on my immune system?  Do I have to be dead?  Or is Aetna waiting for me to faint on the train tracks to realize that it would be cheaper for me to receive this treatment than the temporary “Band-Aid” of individual symptom treatment and emergency room visits?  Is Aetna waiting for me to get a complication that will kill me so they no longer have the “burden” of paying for me?

Insurance companies are a business and money is at the pinnacle of that business.  In my public health profession, I spend my career advocating for people to reduce health disparities but here I find myself working in a professional where the system is broken and people cannot receive lifesaving treatment.  I refuse to let my insurance company dictate my life, and will continue to fight to get the treatment that I deserve.

~Natasha