Reckoning with type 1 diabetes through art and advocacy – The Boston Globe

Creativity helps people process and deal, said Fay, a retired real estate agent who was also a longtime server at the Harvard Club of Boston. Creativity is the key to human liberation.

And so she turned the tools of her survival into something liberating.

Syringes fill 5-gallon water jugs and pickle jars and mezcal bottles. Dozens of vials of long-acting insulin line displays made from the toaster-sized styrofoam boxes that arrive at her doorstep, sometimes holding two vials the size of your thumb. In the corner, a mannequin is stuck full of syringes: Our Lady of Perpetual Injections.

What it is, is altars to the various things that keep me alive, Fay said.

The vials and syringes that fill Fays installation are empty now, injected into her body to help turn the carbohydrates in her food into energy or, put more simply, to keep her alive. Fay is on Medicare, but still pays hundreds of dollars out of pocket a month for the simple privilege of living with her disease instead of dying from it.

As Massachusetts lawmakers and Governor Charlie Baker once again wrestle with how best to overhaul and update the states health care laws, the out-of-control price of prescription drugs and insulin in particular is among a handful of issues that cant wait any longer. As manufacturers have raised prices, the cost of a vial of insulin has skyrocketed in recent years, reaching an average of about $450 in 2016, according to the Health Care Cost Institute. How much insulin a person with diabetes needs varies, but many with type 1 require about two or three vials a month.

Already, those who cant afford insulin resort to rationing it, trying to stretch a vial by taking less insulin than they need. A search of the crowd-funding website GoFundMe turns up more than 7,000 people raising money for insulin, and a blog by a crowd-funding expert: How to Get Insulin When You Cant Afford It: Six Ideas. In July, a Minnesota man named Jesimya David Scherer-Radcliff died because he was trying to make it until payday, his family said, when he could afford the relatively simple medication that keeps him alive.

Everyone with diabetes knows how much insulin they have in their refrigerator, said Chris Noble, an advocate for insulin access who has lived with type 1 diabetes since childhood, speaking recently at a Greater Boston Interfaith Organization event, where 750 packed a Dorchester union hall to urge lawmakers to pass health care reform.

A wide-ranging proposal from the governors office would prevent the costs of insulin from continuing to skyrocket. But a Senate bill goes further, and includes a provision that would cap co-pays for insulin at $25 a month with no deductible. The House expects to go forward with a prescription drug pricing plan as well, though the details have not been released.

A co-pay cap like the one in the Senate bill isnt perfect. It doesnt drive down the already high sticker price of insulin, a drug invented a century ago and relatively inexpensive to produce. So any out-of-pocket savings will surely be passed on through higher insurance premiums.

But for people with high deductible plans, a co-pay cap could literally be a lifesaver, Noble said, because they currently have to pay hundreds of dollars per vial of insulin until their deductible is met. Those who cant afford that will inevitably try to ration what they have. Theyll try to make it a few more days until payday. And some of them will die.

After hearing Noble speak at the interfaith event, I asked Fay if it would be OK to bring him over to see what shed built in the basement.

Id like for more people to be able to see it, said Fay, who doesnt know many other people living with Type 1 diabetes.

And so, on a sunny day in November, Noble and I descended the bulkhead stairs into the temple Fay built to her disease.

Wow, Noble said. I feel like I tell this story, but to see it in a visual sense is so powerful.

He pulled out one of the small plastic drawers that line one wall: This alone would be tens of thousands of dollars of insulin.

They talked about their diseases and compared what they use to monitor blood sugar. They made plans to connect Fay to other people living with diabetes, stockpiling and sharing insulin in case of emergencies.

For us, whove been living with this condition for so long, its like a sixth sense, Noble said. Our lives are absorbed in this. I look at a piece of food and I know how much insulin I need to take for that food.

Fay said her collection began by necessity: Syringes cant just be tossed in the trash. But she soon decided to save everything, and make something beautiful and meaningful.

In a brochure that accompanies the exhibit, Fay says shes grateful to be living proof that it is possible to live a long and healthy life with type 1 diabetes.

Shouldnt everyone, regardless of how much money they have, be given the same opportunity?

To find out more about Diabetes Transformed, e-mail Janine Fay at diabetestransformed@gmail.com.

Nestor Ramos can be reached at nestor.ramos@globe.com. Follow him on Twitter @NestorARamos.

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Reckoning with type 1 diabetes through art and advocacy - The Boston Globe