Alyra Donisvitch, type 1 patient, testified about access to a pump as part of a hearing on medical device taxes. Her testimony is offered here example of clear, not overly emotionaltestimony of a patient with diabetes.
If you want to watch see video 32:25 to 36:50 athttp://www.finance.senate.gov/hearings/hearing/?id=401a4a90-5056-a032-5248-f6ae073a7681
A Fresh Look at the Impact of the Medical Device Tax on Jobs, Innovation, and Patients
United States Senate Committee on Finance
Subcommittee on Health Care
Written Statement for the Record by
Thursday, April 23, 2015
Mr. Chairman, Senator Stabenow and Members of the Committee:
Thank you for inviting me to testify at this very important hearing today. My name is Alyra Donisvitch, I am from Maine and I am absolutely thrilled to share my experience of receiving a lifesaving medical device by enrolling in an Affordable Care Act marketplace health insurance plan.
I was diagnosed with Type 1 Diabetes when I was 15 months old. Type 1 Diabetes is an autoimmune condition. Having Type 1 Diabetes means that my body killed my insulin producing islet cells thinking they were foreign objects, so now my body no longer produces insulin on its own. This means that I have to put insulin in my body and monitor my blood glucose to stay alive. Without good blood sugar management, I am at risk of damage to my heart, blood vessels, nerves, eyes, and kidneys. Without insulin, I would not be able to live.
When I was growing up, I used insulin injections to treat my Type 1 Diabetes. When I was 10, my doctors transferred me to an insulin pump. The pump changed my lifeI no longer worried about the rollercoaster that came with being on insulin injections, as the insulin pump made the control of my diabetes much more accurate and simple to maintain. Being able to have such good control of my blood sugars has helped me to prevent all of the side effects that normally come with this disease.
Throughout my childhood, there were periods where my family did not have insurance. Both of my parents are self-employed, and sometimes, we couldnt afford coverage. Those times were scary for all of us. Luckily, when I was a teenager, my family learned that I qualified for Maines version of Medicaid, MaineCare, and I was able to stay on the program until I was 20.
When I no longer qualified for MaineCare, I struggled to pay for the supplies I needed to keep myself alive. At that time, I was a full-time college student, and I worked two jobs just to pay for my medical supplies and living expenses. Even though I enrolled in programs to help with the cost, they only helped with the cost of insulin, they didnt cover other expenses related to managing my diabetes. I was always worried that something was going to go wrong. There was no way I could afford insurance.
I finally hit a breaking point when the insulin pump I had been using for years began to fail and the warrantee ran out. I looked at different options and found out that it would cost over $9,000 to get a new insulin pump. I did everything I could to keep my insulin pump running. A small crack began to appear near the reservoir cartridge. I held it together with nail polish, knowing that if the crack opened all the way, the entire pump would have died.
There were days where I worried that I would have to drop out of college so I could work and save enough money to purchase a new pump. The stress was constant and all-consuming.
When the Affordable Care Acts new health insurance marketplace opened in Maine, I looked for a plan that would meet my needs. It was important for me to find something that would cover my insulin, a new pump, and my endocrinologist. I was fortunate to find a plan through Maine Community Health Options that only cost $12 each month. I had a $200 deductible and a $500 out of pocket maximum. Shortly after my plan began on January 1, 2014, I used my new marketplace insurance to replace my insulin pump. I only paid $500.
I cannot tell you how relieved I was to finally have coverage. For the first time since I was on MaineCare, I felt like I was in control of my diabetes. Thanks to the Affordable Care Act, I was able to finish my undergraduate degree without worrying about what might happen. I put the money I saved into buying a reliable car and towards paying off my student loan debt. When I graduated, I was named one of two Distinguished Students at my Universitythat would not have been possible if I had been forced to leave school because of very high medical expenses.
Today, even though I have coverage through an employer-sponsored health insurance plan, I no longer worry about what will happen if my insulin pump stops working or about how Ill pay for my medications. Because of the Affordable Care Act, I take comfort in knowing that I dont need to worry about health complications that come with not being able to afford the care and medical device I need to survive. The Affordable Care Act has truly been life changing for me.
Thank you again for allowing me the opportunity to testify today and share my story.