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How Health Insurance Led Me into a MS Relapse

By Matt Cavallo

I enrolled in the healthcare exchange insurance program which started January of this year. Before I decided on a particular plan, I was careful to research which plans had my neurologist as an in-network provider, as well as MS treatment on the formulary. Once I evaluated all of the plan options, I made an informed buying decision based on my criteria.

Around the first of the year, I made an appointment with my new PCP and got a referral to see my neurologist.  I needed to get in right away because my last treatment was in early December and I knew with the change of insurance that I was going to need extra time to get my treatment authorized. When I arrived at my neurologist’s office, however, I was informed that he did not accept my insurance at his private practice. Rather he was only in-network at his hospital-based clinic where he did not see patients. 

Because of this technicality, the insurance company would not pay for the visit without an out-of-network prior authorization. Out-of-network prior authorizations are not included in the plan. Even though the healthcare exchange website and the plan’s provider search listed my neurologist as an in-network provider, the front office staff told me that I would not be able to see my neurologist. As a consumer, how could I possibly have known this if the plan listed my neurologist as in-network?

This was devastating news to me. I've been seeing my neurologist for more than six years and the thought of getting established with somebody new after making an informed buying decision was very disappointing. However, my neurologist did see me and wrote a script for my treatment. This was the first week of January and I was sure I still be able to get my treatment on time.

A month passed and no word from insurance. I called several times inquiring on the status and letting them know that I was past my infusion date and needed treatment soon. I was told that while my treatment was in the formulary, the insurance company was not contracted with an authorized infusion suite. Dumbfounded, I asked what I could do to fix this situation and they told me I would have to wait while the prior authorization was being evaluated.

Another month passed and I had now been off of my treatment for more than seventy five days. At this point I was starting to have pins and needles in my right hand and it was extending up my right arm. I called the insurance company again, told them I was starting to become symptomatic and that I really needed my medicine, stressing that it was now a patient safety issue. There was still no response other than “the script is being evaluated by prior authorization.”

At this point, I called my neurologist office again. I had been working closely with them and they had been contacting the insurance company on a daily basis, trying to get the out-of-network infusion suite to administer my treatments. When I called in March to talk to the neurologist office, the nurse told me that the insurance company had denied the script three times as a result of not being contracted with an authorized infusion suite. 

At this point my right arm was completely numb and nonfunctional. I couldn’t do any of my activities of daily living.  I couldn't wash myself, I couldn’t eat, I couldn’t dress or undress myself and going into the bathroom was a difficult process. I started to get drop foot on the right side. So now, not only was I not functional on my right side but I also wasn’t able to walk safely. The right side of my face became numb and when I was trying to brush my teeth, I could not shut my lips tight enough to keep the water inside my mouth so it squirted all over the sink. As a result, I was slowly deteriorating at my house and losing my ability to work. I was also sustaining pain and suffering as a result of this severe onset of symptoms. 

Throughout it all, I called the insurance company again and again begging them to push my treatment through. My belief was that if they advertised my treatment as an in-network option that they would, in good faith, have to honor that commitment. I was wrong. In fact, they denied my claim three times with no notification as I continued to deteriorate. 

Finally, on April 4, after my neurologist had a peer-to-peer conversation with the prior authorization department, I was able to get my treatment. At this point, however, the physical damage had been done. I had to be given two three-day courses of IV steroids and an injectable gel to treat the symptoms. I also had to get an MRI to evaluate the newly developed brain lesions. My out-of-pocket costs were soaring. My wife who has no clinical training, had to play nurse to switch out IV bags at home and inject me with subcutaneous treatments needles. She had to do this on top of having to take care of the house and kids by herself because I was unable to help or participate because of my physical condition.

This insurance prior authorization situation levied an unfair burden on my entire family and my workplace. And it is still not over, because I am still recovering from the relapse that ensued from not being able to get my MS treatment when I needed it.  I am slowly getting the feeling back on the right side of my body and am able to walk more sure-footed.

The thing that really gets me about this situation is that I've done everything right to advocate for myself in this process. I made an informed buying decision based on my doctor and MS treatment. I bought a more expensive plan so I would have less out-of-pocket costs.  I was active in getting the proper referrals from my PCP and I submitted my prescription within the right amount of time. I made follow-up calls and I advocated for myself.  But none of my education or experience with health insurance seemed to be help this situation.  

I know that I'm not the only person who has fallen through the cracks. Your health insurance should protect you from harm and provide the preventive care to keep the costs contained in the system. In my case, the health insurance company's failure to act has caused a more expensive relapse and possible permanent disability. It also did so without notification or explanation to me, the consumer, or accountability. At the end of this month, my premium will be due, but my life will never be the same. No insurance authorization should ever lead to an MS relapse, especially when the plan says it’s covered.

Although my situation with insurance may be rare, it is important to realize that mistakes do happen often whether it is through coding, billing or preauthorization.  Your health insurance has a direct effect on your quality of healthcare.  Educate yourself on your plan and your rights and above all else, become your own advocate to ensure that you are getting the health care that you need.