Have insurance cover Radicava for ALS for my dad and others.

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My father Joe was diagnosed with Amyotrophic Lateral Sclerosis (ALS) March of 2017. Insurance is denying coverage to the drug(Radicava) that is helping slow down this awful disease and allowing him to live his life to the fullest.

The news of ALS was devastating to him, his family, and his friends. ALS is a disease that causes death to the neurons. It is a terminal disease and most patients live 2-5 years after diagnosis. ALS takes away your ability to swallow, walk, eat, breathe, speak, etc. ALS does not mess with your mind (cognitive capabilities).

July of 2015 was the last time I saw my father while he was still in complete control of his body. I wish I had known that the next time I saw him it would be different.

You see, I lived across the country but I would call my father every day and we would talk for hours. That fall, family began to notice something was different about his speech. At first I was worried it was a stroke or some other horrible issue.

Over the next few months he had many appointments and different tests run but the doctors could not figure out the cause of his declining health. In March of 2017 he was admitted to the hospital so doctors could determine what was wrong with him. At this time he was losing his balance and repeatedly falling.

Then, March 13, 2016, I was driving home from a nine month pregnancy check when I saw the text, it read "I have ALS". A flood of tears came down my face. I couldn't breathe. The next few days were a blur for me.

A few weeks later I gave birth and when my daughter was five days old I drove across the country to see my dad. He was walking but he was wobbly. He could talk but people had a hard time understanding him. My heart broke into a million pieces so I can't imagine how he must have felt or how scared he was. Progression was very quick!

By June if I called my dad I could not understand him. That was hard. We would spend hours on the phone. By July he was using a wheelchair and a walker. In August he was in a wheel chair, his speech declined dramatically, and his fine motor skills were weak.

Last spring, shortly after he was diagnosed it was announced that after 20 years there was a new drug to help slow the progression of ALS. This drug was an infusion called Radicava. Before Radicava came along the only other drug on the market was Riluzole. Riluzole can help patients live a few months longer but is nowhere near as powerful as Radicava.

People using Radicava have seen their disease progression slow down by 33%. The initial infusions require you receive them for 14 days then rest for 14 days. Every cycle after that initial infusion 10 out of 14 days are required then 14 days rest.

It took several months for the drug to hit the market and when it did it came with a big price tag. Radicava is $146,000 a year or $1000 per treatment. It seemed like insurance was going to cover it.

My father started in October and we were all excited to see the results. It didn't take long to see that he had more energy and his speech had become clearer. On his second cycle of infusions he was able to grasp objects and pull himself up to stand. We were all amazed because we hadn't seen him be able to do this for a couple of months.

Now it is January and he has been on Radicava for three months. We haven't seen any progression with his ALS. If not for this medication he would have gotten worse. Just two weeks ago I noticed his speech was even a little more clear and he rolled to his side in bed. That was huge news for us.

Then we found out the insurance company is now stating they will not cover the Radicava infusions. We pressed for the reason why it wasn't covered and were told his breathing test isn't at 80%.

In order to have coverage his test much show greater than 80%. This is ridiculous. Mostly because ALS patients usually cannot even close their mouth around the mouth piece used in the test.

Many pulmonologists will not do this test because it is highly inaccurate for ALS patients. In the end, why does this test matter? He is breathing on his own. They want to take away his quality of life because of an inaccurate breathing test?

What does that mean for someone who has asthma and develops ALS? What about someone who is on oxygen and then contract ALS?

I understand this medication is expensive but there are many that are more expensive. I understand that this is a new drug. The truth is that he has been on it for months now and clearly it is helping. The research is there to show that it helps slow progression by 33%.

I need blue cross blue shield to approve this medication for my father and any other person who has ALS because they deserve to be able to fight ALS. They deserve the best quality of life they can get.

I understand this isn't a cure, but Radicava helps those with ALS live life to the fullest for as long as possible. Today Radicava is our best option, maybe tomorrow we will have a cure, a reversal, or something that slows progression even more.



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