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Doreen Rudolph is a mother who works full time as billing account supervisor at a New York State (USA) hospital. Her daughter Nicole, who has type 1 diabetes, was covered under her benefits for 14 years, but could not remain under that coverage when she had her 26th birthday. Today, Doreen does everything possible to ensure her daughter doesn’t die from rationing insulin – including using $26,000 from her retirement savings to pay for the cost of the life-saving drug.  Doreen’s struggle and worry is similar to thousands of other parents and people with diabetes in the USA, and in other parts of the world, today.

Doreen was generous enough to share the challenges associated with paying for insulin and care with Diabetes Voice, and how it has changed their lives.

When was you daughter diagnosed?  

Nicole developed diabetes at age 12 years. She’s now 28 with a Masters; she is a behavioural therapist for children with autism. I am extremely proud of Nicole’s courage and wisdom. She’s never given up on anything. However, at age 26, she was no longer covered under my insurance (Under-26 coverage) and that’s when things got very difficult and scary.

What did your employer insurance provide for Nicole before she aged out?

I’ve had the same job for over 20 years, and I have a very good plan that is no longer available to other employees.  It’s grandfathered into my benefits. With Nicole, we paid $50 for three months of insulin – she is insulin resistant and uses at least one vial per week. She uses Humalog by Lilly Diabetes. The co-pay for her endocrinologist was $20. There was no charge for her insulin pump or other durables and supplies. I wasn’t aware that all these costs were so high until she was no longer a part of my plan.

What happened when she was dropped out of your plan?

It’s so complicated but when Nicole graduated with a BA, she could only get a job in her field that paid $13-14 an hour and the insurance plan available to her was very weak. We reviewed dozens to get the best we could find but there was nothing, really. Good insurance coverage that provides diabetes care and affordable insulin is just not available to people in the US anymore. So, to help her pay for the cost of insulin, I was forced to take $26,000 out of my retirement fund over the past two years to help. The price for her insulin is $1300 dollars per month, as well as doctors’ appointments, other supplies and occasional hospital visits. I would have taken more if it had been approved. She cannot afford a CGM, and her insulin pump will go out of warranty in a few years.

I was forced to take $26,000 out of my retirement savings fund over the past two years to help. The price for her insulin is $1300 dollars per month, as well as doctors’ appointments, other supplies and occasional hospital visits.

How is Nicole doing today?

She has a better job with her master’s degree although she also has 140K in student loans to pay off. She moved to Colorado both for the job and for the fact that Colorado passed a law to cap the cost of insulin requirements to $100. Her school loans, car payments, food and rent are tough to manage along with the burden of paying for high priced diabetes care and insulin.

I’m her advocate and make up for the extra costs. Type 1 diabetes is an autoimmune condition and it is serious. I can’t abandon her. People with type 1 diabetes don’t eat sugar and develop the condition. It’s still a mystery why the islets that produce insulin are destroyed. Without injected insulin, she’ll die.  I worry about her every day.

Who do you lean on for support?

I focus on work, my savings and don’t have a lot of time for my own support needs. Advocating helps, which I do a lot and have been interviewed by Soledad O’Brien, and the Washington Post.  I also advocate with T1International and #NYinsulin4all.  Frankly, my best support network is on Twitter. Nicole’s troubles with type 1 diabetes are the sole reason I joined. I’ve made friends — gotten information, and help.

Are there any other organizations you work with that are focused on diabetes?

I used to give a portion of my monthly pay check to JDRF, but I don’t do that anymore. I appreciate their research, I do. But their silence on the deaths of young adults due to rationing insulin and not sticking up for people who don’t have access is cruel. The industry is bullying people with diabetes, and JDRF is silent. I don’t get it. It’s very hurtful.

When you see the tragedies of other families who have lost adult children to type 1 diabetes (DKA) due to rationing, what does that do to you psychologically?

Oh, my goodness, it’s overwhelming.  It’s terrible. Last time I visited Nicole, I saw she only had expired insulin in her refrigerator. I feel so much for these families and then I immediately think – it could be Nicole next. My greatest fear is that she too will be found unconscious. We speak every day so when I don’t hear from her, the anxiety is terrible. I call her friends, it’s just so much to bear. The injustice is real.

I heard you gave Nicole insulin for Christmas, is that true?

Well, yes. I did. It was a gift from someone to me to give to Nicole. Saving for insulin is always the priority.

What does a vial of insulin represent to you?

My daughter’s life. She gets to live. I get to be her mother. When Banting sold the patent of insulin for $1, he did it so no one with diabetes would ever suffer.  People are suffering now. It’s got to change.

 

Elizabeth Snouffer is Editor of Diabetes Voice.


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