Wednesday, March 29, 2017

The High Costs of Diabetes Kills: RIP, Shane Patrick Boyle

Shane Patrick Boyle has been on my mind and in my heart since last Thursday. 
I've reached out to Shane's cousin on Facebook, but haven't heard from her yet - she's got a lot on her plate. 
Still, I wanted to post the story so that we could help Shane's family - and to prevent this from happening to another person. 
Nobody should die in the United States, or in any other country because they lack the funds to pay for insulin, or don't have access to insulin.
#DiabetesAccessMatters #insulin4all
#########
This is Shane Patrick Boyle.
RIP: Shane Patrick Boyle
This is the link to Shane’s Obituary.
Cause of death: He couldn't afford his insulin.
From all accounts, Shane Patrick Boyle was a gifted writer and graphic artist, founder of ZineFest, Houstona good son and brother, a kind and gentle man with tremendous talent and a giving heart - and his artwork reflected his kind and gentle spirit.


Update: 3/30/17 - This afternoon, Shane's cousin Hannah sent me 
the above illustration and a snapshot
 of his facebook profile below.
She felt both were true representations of Shane's spirit and talent.

The family feels that Shane, who always fought for the underdog,
 would be honored to leave a legacy of motivating others to fight for 
change ~ 

This is the link to Shane’s Go-Fund-Me for insulin, which has now become his G0-Fund-Me account for funeral expenses - for Shane and his mother. 

Shane passed on March 18th, and according to his Go-Fund-Me Page, "Shane died because he was trying to stretch out his life saving insulin to make it last longer."
Shane moved back home to help take care of his sick mom, Judith (she died on March 11th,) and his healthcare was put on the line. 
Because he moved, Shane lost his Rx benefits, was between doctors and needed insulin for his type 1 diabetes. Shane was waiting for his ACA status to be approved and was stretching out his insulin until he had enough money to pay for his insulin, and see a doctor to prescribe prescriptions. 

I didn't know Shane in real life or online, but I do know that In 2017, no one should die because they can't afford insulin or diabetes supplies- Not a single person.  

In 2017, nobody in the United States should have to set up a GoFundMe account for insulin, but to date, 9,242 people have. 
UPDATE: As of 4/10/17, Go-Fund-Me has 6017 campaigns for the search term,"diabetes," and 6017 campaigns for the search term, "insulin."  

My heart breaks for Shane and his family and I am so fucking angry!

Most of us are are so lucky to be in the know, to have a computer or smart phone at our fingertips, to have others who understand, can relate, and can help us when we are need of diabetes supplies. 

I don't know if Shane was aware (-and even if he was, he might not have had the funds to do so,) that he could purchase Regular, NPH, and 70/30 at Walmart and sans RX and for $25 per bottle.
Yes, antiquated insulins and far from efficient, but they most likely would have kept him alive.  
Sidebar: Starting in May, CVS will offer  Novolin R and Novolin N and Novolin 70/30 for $25, per 10ml bottle and without a prescription. 

I don’t know if Shane knew of Insulin Companies assistance programs (Lilly, NovoNordisk, Sanofi), and other diabetes related assistance programs.
But those lifesaving programs require paperwork and time to be vetted.

Unfortunately, Shane ran out of time.  

Shane's insulin was off patent, still cost a fortune without insurance - and in many cases with insurance.
Insulin prices have increased exponentially and across the board, every quarter since 2002.

Insurance Companies and the middlemen increase the price of insulins and other drugs  because they see dollar signs and people with diabetes pay the price, financially and in some cases, with their lives. 

Around the world people with diabetes are dying because they don't have access to life saving insulin.

In the United States of America, people with diabetes are dying because while they have access to insulin at every drugstore, they can't afford the cost of the the insulin they require to stay alive.
Click HERE for a breakdown of diabetes costs around the globe.
It's beyond wrong - it’s fucked up - and it must stop.
America, WE DESERVE AND DEMAND BETTER. 

I don’t know if Shane was aware that the Diabetes Online Community existed or that there were various facebook groups like the non-profit, Type 1 Diabetics Pay It Forward, where people with diabetes give/trade with those in need, or organizations like Insulin4All - that could have helped him. 
I take it Shane didn't know that the HelpAround app for people with diabetes existed, 
but I wish with all my heart that he did
I know that if the DOC knew of Shane's struggle, we would have done our best to help Shane because we’ve all been where Shane stood. 
All  of us have received and given help to other people with diabetes in need.

When I learned of Shane's fate, I cried myself to sleep - I also sent some of my contacts at insulin companies, insurance companies, and la makers links to Shane’s go-fund-me page - and his obituary. 
And I suggest you do the same. 

Join The American Diabetes Association and sign the petition to make insulin affordable.
Advocate and call your lawmakers - your voice matters, so make use it and make noise!
 Help Shane’s family pay for his funeral (any funds leftover will go towards a diabetes charity for those who struggled like Shane
Attend the national/your local March For Health on April 1
I’ll be marching in NYC and I'm one of the speakers and I will be sharing Shane's story. 
All of us need to fight like hell and put a stop to this madness!

In a few weeks I'll be attending an Insulin Access Workshop held by Lilly Diabetes.  
A group of Diabetes Advocates will be sitting across the table from Pharma - and you can be damn sure that I/we will telling Shane's story to those at the table!

12 comments:

Rosemarie Ferrante said...

This makes me so angry and so, so sad. I know, had the diabetes community known, we could have saved his life. Instead we are helping pay for his funeral. It is insane that this is happening in the United States in 2017.

Rick said...

Kelly:

I think your suggestion about the DOC is the best. No one I know who needs insulin or test strips goes very long without. I know of the numerous people that have been helped and I only wish I had known of his plight. I am he would still be with us and yes, I hate funding funerals, when in fac t I could have helped with living.

We need a better way to let people know we exist and an even better way to help folks who need a bridge.

Ania Martinez said...

This is heart breaking. To know that you NEED insulin to LIVE and you can't afford it must be terrorizing. There needs to be laws to govern insulin companies. Insulin is a DAILY necessity there is no way around it. Someone in the GOVERMENT needs to represent us. This is wrong very wrong.

adamscm said...

The Job I have pays for my insurance.
That is why I'm there and been there for 20+ years.
Could I get better work YES but in the end it would cost me more.
Sad but true!

Brenda Bell said...

Shane wasn't the first, and won't be the last... as early as 2011, Medicaid/Medicare/State aid only allowed a 30-something friend of mine enough insulin for two weeks out of the month. In the following three years he lost one leg, then the other, and finally, his life. Unlike Ania, I believe that the current government regulatory landscape has been INTERFERING with both the cost of insulin, and access TO insulin.

Frank Kwiatkowski said...

Horrible. One time I left home on a road trip and forgot my Lantus. Little did I realize NPH could be had without a prescription at Walmart. Instead I tried to get the scrip filled to no avail. By the time I got to Boston I went to an urgent care clinic, was seen, given a prescription and filled it for a ridiculous $300. With the cost of the urgent care bill, my dumb mistake cost me over a $1000. But I am alive. I am ashamed of this country for doing this to chronically ill people. I feel bad hearing this story about Shane. It's not the first story of this type I have heard about.

Bernard said...

Kelly, please let us know what happens at the Insulin Access Workshop.

If I'd known about this I could have US mailed a bottle of insulin and I'll bet I'm not the only one. Maybe we could start a private Facebook group for folks who need an emergency help with insulin?

Shane's death is not surprising, but it is shameful. There has to be a solution that will save lives while we fix the overall problem.

kelly close said...

The lack of education is what is most upsetting - Shane likely did not know he could buy cheaper insulin at CVS (now) and Wal-Mart; I have also heard that analogs were supposed to be part of this deal and it was CVS who was making that not happen (because they would sell fewer prescriptions). Shane would have benefited from all of that. There is lots of work that is being done to spread the word on patient access programs and to truly educate on how to use them. I'll be thinking about Shane and his mom and how this shouldn't be in vain. thank you Kelly.

Keith said...

SMH...should not happen in our country! :(

Cheryl Christie said...

I agree. We do need a private Facebook site. Why don't you start one. I will be your first friend

Karen said...

Yes! I had some one off a diabetic dog group sent me probably 10 unopened boxes of test stripes all still with a good date. I was in tears. I was at a point I was not feeling any lows at all so I was blowing thru them. She was a type 1 but used a different meter. These were her fathers who was moved into a nursing home. I was four when I was dxed. JDF now jdrf had my parents believing the cure was just around the corner. Well that was September of 1983! Must be one long corner!

I think an emergency type group is a great idea.

Maybe name it after Shane?!

Haikal R said...

It's so so SO FRUSTRATING when most people pass on just because medical expenses are exorbitant. I think the solution to this is to build a community where more people would be aware of diabetics who needs financial help. Seems like the gofundme campaign proved to be helpful in a sense that people would actually contribute. But we need a community where everyone around can be alerted earlier.