On Advocacy and Privilege #Insulin4All
I write a lot about prescription drug pricing. I post on social media a lot about the cost of my daughter Lily’s insulin and my wife Cindy’s chemo and other breast cancer treatment. I don’t apologize for my advocacy, and I don’t intend to stop. This issue is affecting so many Americans right now, and I’m so weary of reading stories about people with type 1 diabetes dying because they can’t afford their insulin.
Sometimes when I post on social media, I get feedback about discount programs or Walmart insulin or going to Canada or Mexico to buy our insulin, which tells me I'm not always doing a great job telling our story completely. As such, I wanted to clear the air a little bit about where our family stands right now and give you some insight into why this is such a passion of mine.
We are fine. We are healthy. Lily has an HbA1c that is close to that of a person without T1D, thanks in no small part to the amazing technology developed by selfless people in the DIY community as well as our ability to afford her doctor visits, insulin, and diabetes supplies. Cindy is cancer free and looks amazing, and we are able to afford all that is necessary to keep it that way. We are privileged. I make very good money, especially for a veterinarian, and I work for an amazing company that treats my family like their own. They've been by our side through every battle, and I know they will always do everything in their power to make sure we're okay.
Yes, it's expensive. Yes, I wish I didn't have to shell out over $1,000 a month in premiums and another $6,000 a year to cover our deductible/out of pocket max. I wish I didn't have to pull $275 from every paycheck to fund our health savings account. But the reality is that these costs, while they do limit our ability to purchase other goods and services we might otherwise buy, do not force us into the hard choices that many Americans face when it comes to paying for health care and other essential needs.
So if we're okay, if we're not struggling financially, if we don't have to choose between paying for our medication and other essential things, why speak out? Why tell our story? Why advocate? In short, it is because I believe that with privilege comes responsibility. Just because we find ourselves in a comfortable, fortunate place doesn't mean that we shouldn't be worried and concerned about others who may not share our circumstances. I feel a sense of duty to those less fortunate than us to speak out and try and make things better.
On a selfish note, I also know that things could change in a moment's notice. My job is very dangerous, and with one swift kick from one of my 1,200 pound patients, our lives could be changed forever. I also know that I won't always be around to take care of Lily. There will come a time, and it won't really be that long, when she will be on her own and will be responsible for figuring out her health care and how to pay for it. That worries me tremendously. Lily is the most amazing child. She loves animals in a way that even I never have. She is passionate about caring for them and I have no doubt that if she continues to dream to be a veterinarian like her dad, she will. But I also worry about how the rising cost of her insulin and other care has the potential to slow her dreams and keep her from doing what she wants and what she loves. It shouldn't be that way just because she had the misfortune of being diagnosed with a chronic disease at such a young age.
At the end of the day, the entire issue of insulin and prescription drug pricing comes down to simple fairness and decency. I believe in capitalism. I believe in free enterprise. I believe in entrepreneurship and innovation and rewarding risk. What is happening now with the 1200% increase in insulin price and the astronomical profits that pharmaceutical companies and other players in the health care industry are reaping goes way beyond any level of appropriate business. It is gouging. It is ransom. It is holding people's lives hostage.
I have never in my life asked for a handout. I work really, really hard. I’ve been at the track since 5 this morning, and was here late last night with a sick horse. I love my job and I give it everything I have. I’m not asking for anyone to pay for Lily’s insulin. I’m not asking for anyone to pay for Cindy’s chemo. I am simply demanding that we take a serious look at prescription drug prices and demand better from industry and our elected leaders. This is not sustainable. This is not fair. This is not something that we as a society can tolerate any longer.
I hope you will join us in this fight, if you haven’t already. I hope you will support groups like T1International and Patients for Affordable Drugs and follow the #insulin4all movement. I hope you will call and write your elected officials and speak out whenever and wherever you can. I hope you will tell your stories. I hope you will ask if you need help. And if you are healthy and are immune from these issues, I can promise you that it won’t always be that way. Join us. Speak out. Speak up. For Lily. For Cindy. For us all.
May God bless and keep you always.
