Most of us have had to deal with health insurance companies for one thing or another. I envy the lucky few who have never had to deal with them. Overall I have been blessed with good health. The only thing I have had to deal with are sinus issues. 

Before I get into the disaster that is Premera, I need to provide some background. 

When I was a kid I had my tonsils and adenoids removed and also had sinus surgery. I had allergy issues growing up in New Mexico. I remember a doctor sticking dozens of small needles into my back to try to figure out what pollens or grass I was allergic to. 

Not long after moving to Alaska in 2004 (I was 19) I developed nasal polyps. If you don’t know what they are, consider yourself lucky. They are basically benign growths in the sinuses that make it very difficult to breath through your nose and almost impossible to smell. 

I ended up taking a trip back to New Mexico in 2005 to have my ear, nose, and throat (ENT) doctor surgically remove the polyps. I had been seeing him since I was a kid so he was familiar with my sinus issues. I was told that surgery was the only way to get rid of them. 

The surgery required full anesthesia and lasted a few hours. The recovery took a week, but when I finally got the packing out I could breath and smell a bit. Not long after I could breathe and smell great! The relief was incredible. I was fixed — or so I thought. 

Several years later the polyps returned, causing the same breathing and smelling issues. I was in college at UAA and did not have health insurance. I went to see an ENT in Anchorage, Dr. James Kallman, who recommended surgery. But it cost something upwards of $30,000, which I could not afford.

He gave me oral steroids, which helped in the short term but only for a few weeks. Taking oral steroids long term isn’t a good idea because they can cause serious side effects. 

So I just dealt with a pretty miserable quality of life for years. Until a trip to Russia in 2011.

My friend’s mother-in-law and father-in-law are both doctors in Cheboksary – a city 450 miles east of Moscow. One night at dinner his mother-in-law asked me if I had a cold because I kept blowing my nose and sounded congested. I explained that I had been dealing with nasal polyps for years. His mother-in-law, who was the head doctor of a local hospital, immediately declared that she would get me in to see a Russian ENT. I figured I had nothing to lose. 

I went to go see the doctor right after the New Year. Things shut down in Russia for ten days before the New Year, so the hospital was very busy. After a brief wait (I was amazed how quickly I got in compared to American doctor offices) I was taken to see Dr. Galina Mihailovna. She came into the room wearing a kind of cyclopes eye mirror device on her forehead. It was a bit jarring, especially in the Soviet style building the hospital was in. 

She was nice but classically Russian. There was no small talk, just straight to the point. She asked what the issue was. I told her. She then used a device to spread my nostrils apart and looked into my nose. She immediately said, “You have polyps. I need to remove them!” I spoke Russian fairly well, but was not very comfortable with my abilities in a medical setting. The friend I was visiting, who speaks Russian and English fluently, hadn’t been able to come with me. I was on my own. 

I thanked Galina Mihailovna, but told her I was not in a position to get surgery in Cheboksary, Russia. And I had a 12 hour train ride back to Moscow in a week. She laughed and said, “What surgery? This is not America. I will just take them out.”

I was not sure I understood her correctly and asked her what exactly she meant, and that how could she remove them without putting me to sleep. She started to get frustrated and told me if I wanted her to help me she would, but if not she had other patients to see. I thought about it for a few seconds and said to myself, “Fuck it, what do I have to lose.” After years of not being able to breathe properly or smell, I was willing to try anything. 

She came back with a nurse and a cart with lots of medical equipment on it. She took out a long needle and a vile of something with Russian writing. Written on it was “Дикаин,” which says dicaine. I figured it was like lidocaine. I was wrong. She injected the dicaine directly into the polyps in both nostrils. This stuff was extremely strong. After a few minutes my nose and face were both completely numb. 

She then grabbed a medical device called a snare. It’s something you hold with your your pointer and middle finger and thumb. The end has a wire that constricts when you pull your fingers and thumb together. She put the snare deep in my nose and started yanking the polyps out! The nurse had given me a bowl to hold to collect the blood, which there was a lot of. I told Galina Mihailovna that it felt uncomfortable and asked her if that amount of blood was normal.   

She responded, “Are you a man or a girl? Stop crying. I am almost done.” If you don’t speak Russian there is really no way to translate into English the tone of what she said. She was done in about ten minutes. One of the polyps she pulled was nearly the size of my thumb. 

She then grabbed another vile, which had “адреналин” written on it. This one was easy: adrenaline. She took out another long needle. Before she injected the adrenaline inside my nose, she quickly mentioned that my heart might start beating fast. That proved to be an understatement. My heart immediately started beating like I had sprinted for a minute straight. But it worked to stop the bleeding. 

The experience was intense, but I could immediately breathe through my nose. She sent me home and told me to come back in a few days for a follow up. I walked back to the apartment I was staying at and went to sleep for several hours. When I woke up I could smell. I could not believe it.

I immediately wondered why this kind of procedure was not done in the United States as it was much easier and cheaper than a full surgery.

When I got back to Alaska, I went to see my ENT to tell him what happened in Russia and have him take a look. He could not believe the story I told him. He said American doctors stopped doing those kind of polypectomies in the 70s. I told him it worked great, and asked why they stopped. He basically said liability as it’s more risky. I think it has more to do with the fact the surgery costs a lot of money while the in office procedure does not.

Fast forward a year.

Galina Mihailovna’s procedure had worked, but the polyps had started to return. Believe it or not I went back to Cheboksary and had the same procedure done. Both times when I offered to pay I was told payment was not required because I was a guest. I tried to give her money but she absolutely refused. I did get her a lovely bouquet of flowers.

Later, a mutual friend connected me with another ENT in Anchorage: Dr. Jerome List. Dr. List, who is half American and half Costa Rican, studied medicine in the Soviet Union and speaks Russian. This seemed like a good fit for me. 

By 2014 the polyps had returned. Going to Russia once a year was not an ideal solution. Dr. List recommended surgery. At that point I had a job with good insurance. I still had a fairly high deductible but at least it would not cost me tens of thousands of dollars. I had another surgery to remove the nasal polyps like I did in 2005. Once again, after a week of recovery I could breathe and smell. 

Around four years later, the polyps has returned. I really did not want to have another surgery. Dr. List was able to somewhat manage the symptoms by giving me injections of Kenalog, a synthetic corticosteroid, directly into the polyps. That worked for a few months for breathing and somewhat for smelling. Getting Kenalog injections every few months was not great but it was better than nothing.

Dr. List even agreed to do an in-office procedure somewhat similar to what Galina Mihailovna did, but under stricter conditions. It also was not the Russian price. Just like in Russia, that worked for about a year. 

During all these years I always wondered why there was no cure for nasal polyps. I read dozens of medical studies to no avail. The only thing they seemed to agree on was that nasal polyps are the result of some kind of inflammation problem. But there was no fix other than surgery. 

I spent countless hours on online forums reading how others have struggled with nasal polyps. Many had had surgeries like me, only for the polyps to return. Some had strange remedies, like applying castor oil to the polyps or going to desert climates. Others suggested not eating gluten. I tried everything. Nothing worked to fix the problem. 

That is until 2021. I went to go see Dr. List for my normal Kenalog injection. He told me about a new drug called Dupixent that might help. Dupixent is a monoclonal antibody originally developed for moderate-to-severe dermatitis (eczema). But doctors soon realized it was also helping people with nasal polyps and chronic sinusitis. I had never heard of it.

Dupixent is expensive, but Dr. List had some samples for me to try. Dupixent is directly injected into the leg every two weeks. I took my first shot with not much optimism.

To my utter disbelief, I woke up the next day and could breathe and smell. I could not believe it. I was almost in tears. For 16 years I had been dealing with oral steroids, surgeries, trips to Russia, Kenalog injections, and more. None of those things was a permanent solution.  

A part of me thought that maybe it would only work for a while and, like the other treatment options, the problems would return. I was wrong. My quality of life drastically improved. After some back and forth with Premera, they approved the Dupixent. I have been self-employed since 2018 and buy insurance through the exchange, so I was not sure if they would cover it. 

Since then, every year when I renew my insurance I always make sure to choose a plan with Premera that covers Dupixent. I get Dupixent through a specialty pharmacy called Accredo. There have been minor issues, sometimes with the prescription and sometimes with the insurance. But I was always able to solve these by making some phone calls. It could take a week or two to resolve, but it was something I could navigate.

That all changed in May. 

When I called Accredo to get an order shipped to me (this is something I need to do every few months) I was told my prescription had expired. They said they could not get me the medicine until the prescription was renewed. When I called Dr. List to let him know, he informed me that he had recently retired. He gave me a few names of ENTs in Anchorage he recommended. One of them told me it would be a month before they could get me in. Another was not taking new patients.

I was eventually able to get into Geneva Woods Ear, Nose, and Throat Specialists. I saw Dr. Todd Parish. He was nice, attentive, and sympathetic to my situation.

I explained my medical history and that I needed a prescription for Dupixent, which was a miracle medicine for me. Based on my history, he wrote me a prescription. But the prescription is not something I can directly give to Accredo. Someone in his office told me they could send it in if I got them the information. I called Accredo and got a fax number that the prescription could be sent to. The office told me they would take care of it. 

By this point I could still breathe ok but my sense of smell was fading. 

I called Accredo two days later. They told me they had not received the prescription. I went back to Geneva Woods and explained that Accredo had not received the prescription. Gloria from Geneva Woods called me the next day and told me she would call them and take care of it. I thanked her. 

A few days later I called Accredo again to see if they had received the prescription. They said they did but that my insurance was now requiring something called a prior authorization. I explained I had been on Dupixent for four years. There was nothing they could do. I called Gloria back and told her what Accredo said. I then figured out that this was not on the doctor’s office, but Premera. 

I called Permera and explained my medical history and told the person I spoke with how much I relied on Dupixent. I also said I always choose a plan that covers it. The woman I spoke to was nice and said it should not be an issue. A week later I got this letter from Premera denying the approval, saying it was “not medically necessary.” 

By this point my sense of small was 90% gone. 

I called Gloria back. Their office had also received the denial from Premera. I asked what could be done. She told me I needed to get a costly CT scan so they could show Premera I needed the Dupixent. I got that scheduled with Providence Imaging, and then had to get another appointment with Dr. Parish scheduled. Gloria also told me she would see if she could get me a sample of Dupixent while I waited. 

It was maddening dealing this. Knowing there is medicine that works and allows me to smell but that may as well be on Mars was driving me nuts. I have some other friends who have gone through similar nightmares with Premera. The only logical explanation is Premera, and other insurance companies, do this because some percentage of their customers just give up, which saves the insurance companies money.

Gloria later called with good news. She was able to get me a sample that lasted a month. Just like in 2021, not long after taking the injection I could smell again. 

I went back to see Dr. Parish after the CT scan. He said it was clear there was some nasal polyps and that he would send this information to Premera. A week later Gloria called me with good news: Premera had approved the Dupixent.

But of course it’s not that simple. I called Accredo to see if they received the prior authorization so I could schedule an order. I was told they had not received it and that it was under review. 

I have been trying to solve this for four months. I have probably made 30 calls between Accredo, Geneve Woods, and Premera. Geneva Woods has been extremely professional and helpful. The Accredo people are nice but can’t do anything without a prescription and authorization form insurance. Premera is the problem. 

I can’t imagine how people with limited resources or that lack the skills to navigate the elaborate maze of doctor offices, insurance companies, and specialty pharmacies deal with problems like this. It’s incredibly frustrating knowing that our entire society recognizes how utterly screwed up our healthcare system is yet it never gets fixed.