Thursday, January 21, 2016

A Letter to Joe Biden

I just received an email from a brain tumor caregiver about a post he wrote and it is the most eloquent explanation as to why our clinical trial system is failing us as patients. He precisely explains everything I think, and exactly how I feel. It needs no further introduction.


If you haven't seen Surviving Terminal Cancer the documentary, as he references in the letter, please, please click to see it: WATCH THE DOCUMENTARY HERE. And Logan, you are a rockstar! Thank you!



Patients, people, are dying! Until we find a way (and I'm guilty of not figuring out how of solve this problem) to take control of the system of how we treat brain cancer, we will continue to die at a 99% death rate. I may not be a good organizer, but I am willing to do whatever I can to get the message out. To work for the cause in a meaningful way. There is so much money wasted on things that don't help us right now, in this moment. I'm sick of wasting money on awareness, on talk. We need to push legislation through to give patients the opportunity to try promising drugs and treatments. We are given no hope, because the things that could help us are tied up in bureaucracy and it will take years even decades to have access. And during that process, many treatments get dropped because they won't make enough money - not because they don't have efficacy.

I am sharing this Letter to Joe Biden to help spread the word of Logan Lo, about his courageous wife. I don't know how to do it, but we need to mobilize the brain cancer movement in order to gain traction. The AIDS activism, with ACT UP, effectively stopped the requirement of Phase 3 trials for AIDS cocktails, getting the drugs to patients immediately.

Nothing will change until we take our frustration, our fear, and anger, and start being heard. We need the equivalent of the Day of Desperation.

5 comments:

  1. Hi Jess,

    I've been periodically checking this since reading your story a few years ago in the Greenlake blog (I think? I read it somewhere. I actually used to live just down the street from your cute little house on the corner there. I ran by it every day and admired the garden!). You are such an inspiration to everyone, not just those suffering from cancer. My uncle was just diagnosed with GBM, and the first thing I thought of was to share your blog with him and my aunt. They both found it incredibly helpful, so thank you! It has been almost a month now, and they finally found a doctor who is compassionate and truly interested in helping, rather than just writing him off as a statistic. I could not agree more with this letter you posted, especially because of how frustrating the last few weeks have been. Brain cancer is one of the worst kinds of evil, and I can't help but wonder how many people could have more time if they had access to all potential treatments from the start rather than having to jump through hoops just to get a second opinion.

    Anyway, I was thrilled to read about your latest MRI results, and I wish you all the best!

    Happy Friday,
    -M

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    1. M, What an honor! Thank you so much for checking up on me all this time! (I do miss GL.) I am so sorry about your uncle's diagnosis, if there is anything I can do, please let me know! I'm so glad the blog has helped them. You're right, the problem is you get diagnosed with GBM and there just isn't enough time for trial and error. Or trying things one at a time. It's just impossible. There's this legislation gaining traction throughout the states, many have already adopted it, it's called Right to Try. I don't know where your uncle lives, but maybe it could help him? http://www.raps.org/Regulatory-Focus/News/Databases/2015/06/24/21133/Right-to-Try-Legislation-Tracker/ I'm sending so much love to you and your family, and I'm sorry they had to join this club.

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  2. Jess - thanks for the repost and thanks for having this blog.

    I reached out to you in some of the darkest moments of my life and you responded with positivity and warmth, two things I desperately needed at the time. I am forever grateful.

    You must beat this thing, just as my wife must, because the world needs people like the two of you.

    Logan

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    1. Logan, I am so glad that I could be of some help! As you know, if we are going to have meaningful change in how these patients are treated, we have to band together. There is strength in numbers. I will do whatever it takes to help! Your wife, you and your newborn baby are all in my heart, but I know that is not enough. We need change now.

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  3. Wow. That's all I can say is wow. Poor guy!

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