I Get Hate Mail?

To some this might come as a shock but I actually get quite a few hateful messages from people who are upset that I was able to get access to Nurown while others were not.

In pre-op

Here is why I don’t let it bother me and you shouldn’t either. It’s not based in rational thought and comes from a place of either suffering or ignorance. Either way, these people are in need of compassion. So why are they upset? Did they ever direct anger towards the few people who have accessed experimental treatments through the Expanded Access Program? Or against people of means who have been able to travel and access treatments in foreign countries? Of course not. In the dialogue I have had with angry people I have been able to identify a few common themes. I will share them here so it makes more sense. 

Anti Semitism

I know this is hard to believe in 2020, but the majority of angry messages I get involve some language that reveals resentment for Brainstorm simply for being an Israeli company. Sadly it is not only an issue of education. I have heard it as much from college professors as I have from uneducated social media trolls. Often they don’t even realize their own biases, and they fly into a rage when you ask them not to use hurtful and discriminatory language. This is a problem that is beyond our ability to resolve, but I think we all have an obligation to stand up against it. 

Politics

It’s no secret that there was significant opposition to the Right to Try law and there are people who were disappointed that they were not able to block passage of the law. To the credit of some of the strongest voices of opposition, many of them put the arguments behind them and have actually reached out to collaborate on ways to make the law practicable. I have tremendous respect and gratitude for these people. Unfortunately there are always spiteful people. People whose identities are so interwoven with their opinions that they view being proven wrong as an existential threat. In their fear, they lash out at anyone or anything that might put them in a position of cognitive dissonance. What can be done for these unfortunate souls who live in constant fear of diversity of thought? Love them anyway. Anger has never been a cure for fear. Keep participating in open dialogue and hope that one day we’ll all realize that we want the same thing. 

Envy

At some point every single patient or caregiver struggles with this. Early on in my disease, when I realized that I was already symptomatic too long for FDA trial participation, it seemed so unfair. I might have looked at another patient who was not diagnosed until after they watched their kids grow into adults and think, “why couldn’t that have been me?” I’m sure anyone who also wanted to access Nurown thinks it is unfair that they have to wait for now. The hardest part is, they are right. There are treatments out there that are going to be effective for people that they won’t be able to access because our system is not nimble and well financed enough to make it possible. The even harder part is that we don’t have a consensus on how to get there. It is devastating. Of course most people don’t use me as their target of resentment, but for the ones who do, I understand. I am sorry. I hope that one day we won’t have to look at each other and wonder why everyone seems to have different treatment options. We will all have the right therapy for our unique conditions. 

I want to end this on a positive note. I’m grateful that Brainstorm is doing the right thing and working with the FDA to make Nurown available for everyone. I believe their top line data will be available this year and I believe it will be overwhelmingly positive. I don’t have any information that you don’t, but based on my experience and other accounts from trial participants, this is something special. I am also really optimistic about the direction patient led organizations like IAMALS, Team Gleason, and Augie’s Quest are driving research. Precision Medicine Programs, Platform trials, and outside trial access are all about respecting you as an individual, and they are going to lead us to a better tomorrow.

11 thoughts on “I Get Hate Mail?

  1. Matt, excellent job at identifying the root of misplaced anger… fear. Any acces to potential therapies has the potential to provide insight to researchers. Patience and understanding allow us to live peacefully. Continued prayers for all involved, much love to your familt.

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  2. Hi Matt, something I wanted to do was thank you for taking on this steep task of being a sort of beacon of hope for those of us with this awful disease. You were one of the first people I found online after furiously searching the Internet for answers even before I received my fateful diagnosis in September 2019.
    You had only the kindest and most encouraging words, and you put me in touch with some wonderful people. Thank you for documenting this experience and providing your unique perspective.

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  3. Matt, I called through a navy buddy of yours for my brother diagnosed. What I found is some try a fight using all possible means an others (my brother) choose to accept their fate and not fight it.
    I commend you and thank you for not giving up and fighting not only for yourself but also for everyone that has this affliction and any other that are willing to try experimental trials. Right to Try was worth fighting for and the right thing to do.

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  4. Matt: You are an Inspiration to all. Dont ever let the negative people bring you down. They are the ones with the problems. I believe anyone in trials or going overseas for treatments are only helping find what may work for so many others. I know it is frustrating to PALS, because we are all on a short timeline. But the shown Positive results for NurOwn gives me hope, and makes me Fight harder so ,hopefully I can also get Nurown. KEEP ON FIGHTING AND BLOGGING 👍👍

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  5. Matt have nothing to had to an incredible blog. My only observation is you are truly an American hero. We feeling blessed to know you and your remarkable family.

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