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#MyLifeMatters Repost

Prepare yourself for a rant...and then a great article. Today, I opened up the CF Roundtable Newsletter. This newsletter is for adults with CF and covers all sorts of different topics that are new and unknown in the CF world. Because people are living longer, CF adults are dealing with issues like GI problems, cancer, work-related stresses, getting married, and having children. This is all pretty new territory when it comes to how to handle adult life with CF because for most of CF history, people with the disease never made it to adulthood. It's incredibly exciting to read this newsletter every few months and see all the great things people with CF are doing.

However, one article I read in this fall newsletter absolutely broke my heart and brought me to anger. It's entitled "#MyLifeMatters" and is written by a young woman with CF who has recently been in the fight of her life to receive the new, potentially life-changing drug called Orkambi. This drug is supposed to target the underlying cause of CF and has given great hope to the CF community.

Unfortunately, as you'll read in her post, insurance and money reign supreme to health and humanity in today's society. And you know what? I'm sick of it! I understand that potentially life-saving drugs are expensive, and I get that the CF population is small. But the fact that insurance companies can put a price on someone's life is despicable. To think that Klyn could be able to breathe deeply for once in her life and run and climb mountains and work and become a productive member of society once again without her current health constraint in its full capacity, and yet she is denied the medicine she desperately needs is sending a message that she is too costly and her life is not worth the value of saving it. Obviously, this does not apply to all insurance companies, but this is an issue we need to think critically about and evaluate within our society. One day (hopefully soon), I may be able to be on some of these life savings drugs. When that day comes, will my life be worth saving, according to my health insurance? I sure hope so.


By Klyn Elsbury

A few nights ago, I was wrapped in a blanket, lying on top of an RV off of a scenic overlook in Utah, staring up at a sky full of endless, scintillating stars. The air was cool and crisp, delightfully tickling my lungs as they adjusted to the altitude. A handsome man with a beautiful soul was holding my hand and pointing out Venus to the south. Together, we were dreaming about the future. Something that, until Orkambi came, I had all but given up on.
I dropped out of college because I started getting hospitalized several times a year and I believed I would never live long enough to pay off my student loan debt.
I moved to California from Florida for a career in biotech/pharmaceutical recruiting so I could be closer to the companies that were developing the very drugs that would keep me alive. That would give me hope. When I started getting hospitalized every four months, I made the choice to leave my corporate career and preserve my lung function via exercise, diet and adherence to prescriptions that managed the symptoms. I tried to get in on every clinical trial for Orkambi, before it was even called Orkambi, but time and time again I was denied because my lung function was too unstable.
He squeezed my hand excitedly, “did you see that?” referring to a shooting star that emblazoned an almost pitch-black night. My heart skipped a beat. I shut my eyes and made a wish that one day. Someday soon, I would be on this drug. I opened my eyes to see him smiling back at me.
For the first time in a long time, I believed I would have a future again. I was the first person in clinic the day after Orkambi was approved. However, they couldn’t write a prescription because I needed to go on IV antibiotics first. My lung function was around 50%. It was my third round of IVs this year alone.
Meanwhile, one of my girlfriends locally who got approved for the drug posted on Facebook that for the first time in years, she woke up without coughing. I can’t imagine a morning where an alarm clock wakes me up instead of a violent coreshaking, gut-busting cough.
“Wow!” We both said in unison at yet, another shooting star. Who is lucky enough to see two of them in one night sky — just moments apart? Surely this means there are good things to come. Waking up without a cough became my second wish.
I finished my IV round just before taking off on this week-long road trip. I went to clinic and my blood tests revealed that despite three weeks on intense IVs, my kidneys and liver were strong enough to start Orkambi. I just had to fill out two simple forms and they had to fax it in. Simple.
The first fax was never received. I called clinic. They sent it again. This continued seven times. Finally my form went through. I had my initial phone call with Vertex somewhere between Vegas and Utah, where I was assigned a case manager and promised they would send the information to my insurance.
He squeezed my hand, bringing me back to reality. “What are you thinking?” he asked, with his goofy smile and wide, bright eyes. We heard an animal off in the distance and turned our faces to the right, just in time for the third shooting star. “I once heard that it’s bad to wish on a shooting star,” I started, “because we are wishing on something that is already dead.”
He immediately interrupted with an enthusiastic tone, “Actually, that dead star carries in it all sorts of bacteria and cells and other scientific stuff that is the perfect culmination to create new life. It just needs to land in the right environment.”
I thought back to the day my dad had to rent a wheelchair and push me around 6 Flags on a family vacation. It hurt my lungs too much to walk. I hated everybody having to stop enjoying their time because I had to take “breathing breaks.” Maybe soon I will be in the right environment. Maybe my lungs are that perfect combination of bacteria, cells and scientific stuff waiting for the right environment to thrive. My third wish was that he was right.
He kissed my forehead. Marilyn Monroe once said, “The real lover is a man who can thrill you by kissing your forehead or smiling into your eyes or just staring into space.” I smiled and turned towards him as shooting star #4 lit up our little world. Wish number four was for my heart, not my lungs.
It was just after 3:00 a.m. and we decided to climb off the roof and go inside. Just as I stood up, I saw the final shooting star streak across the Northwest. Joyously dancing, as if a message from the heavens to tell me my life is worth living and everything I could possibly imagine, would come true. Now I’m not sure on how this whole shooting star, wish thing actually works. But I’ve had four amazing wishes, so I decided to save my final wish for if I ever needed it.
When I returned from my weeklong trip, I was interviewed by KPBS about athleticism, cystic fibrosis and the hope Vertex gave me. The reporter asked, “Have you thought about what happens if you are denied the drug because of cost?”
I have spent a lifetime overcoming obstacles. I have found my greatest strength in the midst of insurmountable weakness. Yes, I have thought about being denied several times. The only thing I haven’t thought about was, how I would tell my daddy that the drug I mentioned two years ago while he was pushing me around 6 Flags in a wheelchair, to fill his heart with reassurance and hope, I can’t actually have. But then again, a drug company can’t really do that. An insurance company can’t really put a price on my life. Can they? Will they?
I left the interview and checked my voicemails. “Hi Klyn, this is Chris, from Vertex…” the message began. What followed was a 42-second scripted speech. I was denied. Some executive, somewhere, decided my life is not worth the cost of Orkambi. Little do they know, I still have my fifth wish. And I know this great spot in Utah if I need more…

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