Sunday, October 2, 2016

Crowdfunding - The Thin Veil Between Life & Death

Did you ever take part in the school fundraisers your junior high might have put on? The ones where you would go around and ask your neighbors, your coaches, and your parents friends to give you money for overpriced items such as magazines, wrapping paper, or cookie dough.  You were embarrassed, but you really wanted that hamburger shaped phone you would win at 30 items sold! Now imagine the stakes were a bit different: you are asking for money with nothing to give in return, and the prize for receiving the right amount - is your life. That is what it's like running a crowdfunding page such as GoFund Me, YouCaring, or GiveForward.

I cannot tell you the cringe worthy, slimy feeling that shivers down your spine when you must crowdfund from those that already do so much to love and support you in order to simply afford necessary medical treatment. My failing body asks much physically and emotionally from those around me, and now I must drain them financially as well? How is begging the community to open their wallets because I became unexpectedly ill and do not want to die fair to me, or those donating? It leaves me conflicted knowing they are sacrificing so I can live. I feel a bit like a panhandler begging to receive others hard earned money with nothing to give in return. I know that when someone donates to a crowdfunding site they genuinely want nothing more than to see your treatment succeed and for you to lead a happy life lacking disease. However, it still eats me up knowing I have no way to repay their kindness - They are literally giving me life, and all I can do is say, "thank you." 

I am a patient living the reality of not being able to afford life saving treatment because of its incredible cost. I am a patient who relies on crowdfunding, and the grace of others to keep me alive. You see, I am losing a battle against an aggressive autoimmune disease known as Systemic Sclerosis and unable to work. I am on oxygen, a feeding tube, and receive weekly visits to my home by a nurse for infusions - I am only twenty-five. Rare disease patients like myself often require expensive medical interventions in their lifetime but, over 95% of rare disease have not one FDA approved treatment. Insurance has deemed almost every life altering procedure, treatment, medication, and surgery that would benefit me, "off label," and "experimental." Therefor, the burden of the cost lays solely on the patients shoulder - our lives literally depend on crowd funding, which can deffer our treatments by months. I find myself in this situation currently, instead of receiving immediate treatment, my life saving Stem Cell Transplant will be delayed, simply because insurance doesn't want to invest in a rare patient; I must fundraiser the immense cost on my own. It not only is overwhelming for me, but for my family who has to watch as I slowly deteriorate while awaiting the, "Goal Funds" to be raised.

High treatment costs, and health insurance inequalities force patients into situations such as bankruptcy, eviction, and even death. These are devastating epidemics that plagues patients throughout the country. We live in a society where lower and middle class individual pass away from treatable illness even though we have advanced medical technology available - they simply cannot afford it. Crowd funding has changes the lives of an uncountable number of patients; it has literally saved many of them from death. However, the fact that crowdfunding is the deciding factor to which patients live or die is a terrifying thought. That being said, thank you to anyone who has ever donated selflessly to help a patient in need. You made a serious difference in someones life that may have otherwise been lost.  

 Chanel's Youcaring can be found at

1 comment:

  1. Thanks for talking about this, Chanel. As many affected people as possible need to put this out there: many patients' lives have, or may at some point, pivot on crowd-funding. We need a better answer in this country. That said, don't even think about what you can or cannot offer people who come through to support your funding effort. Giving is good medicine. Receiving is good medicine.
    All people need in return is for you to be yourself. We all know you do that very well. John Saul