Gail Porter - Lung Cancer Survivor

Meet Gail - Lung Cancer Survivor Community of Courage - Moffitt Cancer Center
Gail is truly inspirational and her story is touching.
Here's what you should know about Gail's daughter, Celia. She is an amazing mother, daughter, community leader and firefigher/paramedic in Tampa, FL.

If Celia has any time for herself, it's spend serving her community by raising awareness and leading fundraiser for cancer.

We concluded that it's improbable that Gail or Celia would ask for help since their lives revolve around giving. So as her loving friends, we decided we should ask for them. Please read their story and help if you can. 

This was posted  and shared on Facebook and Instragram by Celia Merritt on 9/15/17. 
(few minor edits)   

This is my mom, Gail Porter.
She was diagnosed with Non-Small Cell Lung Cancer (NSCLC)  with an ALK5 mutation (causes cells to grow and spread) back in 2010. November 2017 will actually be 7 years after she was given a terminal diagnosis and 6 months to live.

She has endured, she has fought and Moffitt has provided the best care we could have asked for.  

This amazing story has recently taken a sad turn.  One month ago, my mom was prescibed a new target therapy by her oncologist and her insurance approved the payments . We have yet to start therapy.

Why you ask???

Alunbrig is a new target therapy and has been manufactured by Takeda for over a month now. Her insurance approved the payments of over $5000 per month, so you would think that should cover the cost of the drug. We even applied twice for assistance through your OnePoint; each time she was declined assistance because she has insurance.

Takeda is demanding a $3,100 copay per 30 day cycle of pills before they will give her a single dose. Our goal is to cover the copay for one year.

My mom taught special needs kids until the month she was diagnosed with cancer. Her retirement is less than $500 per month.

I am a firefighter/paramedic and she has lived with me since she fell ill. My mother will die without this medication. Takeda decided that they will not give her Alunbrig until they receive $3100 per month from my family.

[Takeda] I can tell you right now she doesn't make even close to that each month. I am a single parent who spends every extra penny I have to support my mom and my daughter. I have even participated in at least 7 fundraisers for the American Lung Association to help support the development of these new drugs and raise awareness for lung cancer patients. In fact, I am currently training for 2 fundraisers and if you look at my profile I'm sure it will be pretty clear how involved my family has become since her diagnosis.  Check out I'm the team captain for Hillsborough County Firefighters. Or you can look at I'm the 2nd dancer, when you scroll down.

When she was initially genetically matched with Xalcori we contacted Pfizer and within a week we had the insurance worked out and Pfizer was willing to take the insurace payment, a $25 copay from me and write off the rest so she could have the drug and live a bit longer with her family. Each time a therapy failed, we've always been able to find a way.  We've always fought to find a way to fund a comfortable treatment for my mother's cancer.

Over the last 7 years of drugs, trials and research, never once have I been met with a company [Takeda] that is so unwilling to support a patient. I am currently working to find out the cost to manufacture your medication, Alunbrig. I cannot fathom a person or a company so hooked on profit that they would allow a patient to go without a medication that is needed for survival. You [Takeda] are currently sentencing her to death.

-Cancer doesn't ever take a break. 24 hours a day, 7 days a week her cancer is growing.-

She is becoming weaker and in more pain. And yet, with each passing day we haven't gotten any closer to finding a resolution to get her this medication so she can continue to fight. Shame on you Takeda!

In an article published back in May of this year you stated you were going to price the drug in the middle of the market and yet today it is the highest costing drug in this family ever! $14,250 per month or roughly $171,000 per year. The mean survival rate before failing off this drug was 14 months in the trial phase. This is outrageous! This is unfathomable! Please explain to me how I'm supposed to look my mother in the eyes at the end of the day and tell her she is going to die because I can't afford $3100 per month! Better yet why doesn't the president of your company give us a call and personally tell my mom she is going to die in a couple months. Tell my 5 year old daughter her grandmother isn't worth your company assisting a woman who has insurance that cannot afford the copay.

I have dedicated my life to helping others and my mind should be on my community, my home and my family.

Instead, it's reeling with the helplessness; each and every day my mom is closer to losing her battle with cancer because every road we look down circles back to Takeda. And all we've heard back from you is "I'm just doing my job by informing you that there is no medication until we receive $3,100. When we receive $3,100 you can start the medication."

#takeda #cancersucks #lungcancerawarness #alunbrig #moffitt #targettherapy #turquoisetakeover #americanlungassociation

Thank you for helping us share their story.
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Organizer and beneficiary

Celia Merritt 
Gail Porter 
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