After the Register published an editorial on the high price of insulin, Iowans contacted us to share their stories. Here are excerpts from a few:
āAs of this year, I will have had Type 1 diabetes for 30 years. I was diagnosed around 5 years old. I remember my parents’ worry about being able to afford all the insulin costs, testing supplies and doctor visits. They shielded me as much as they could, but I had a sense of their fears.
“As an adult, I was unable to afford my insulin costs, even with insurance. I quickly learned to ration my insulin to spread it out for as long as possible. I lost massive amounts of weight and often went into diabetic ketoacidosis. But, having lived with high blood sugars for so long, I became quite adept at treating this by myself instead of going to a hospital where I would add more health-care debt.
“Even now, with a steady job, the help of my parents and my husband’s insurance, insulin is still expensive. I used to get a box of 4-5 insulin pens each month. In mid-2018, that changed. I now only get 2 or 3 pens (depending on the insulin) per month for the same cost. I asked my pharmacist why this changed. He said insurance wants to deter patients from sharing their leftover insulin with others each month. I have numerous side effects from the many years of high blood sugars, caused in part by insulin rationing. I don’t know how I have been able to make it out alive after so many years, relatively healthy, when so many others have not.ā
ā Roxanne Strike, Ames
āI have been searching for years for an outlet to voice my frustration with the rising and frightening costs to manage this illness.Ā I am 59 years old and was diagnosed at age 16.Ā For four years I had no health insurance, and paid for all of my supplies out of pocket. I have never skipped or reduced the amount of insulin I need.Ā However, the costs are dramatically higher now that I fear if I lose my insurance, I do not know how I would survive. This is a crisis for many families.Ā I recently heard Chuck Grassley say, āWe need to get to the bottom of this.āĀ I appreciate that he is involved, but we are at the bottom.”
āĀ Anna Sobaski, Iowa City
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āWhen I was diagnosed with Type 1 diabetes at the age of 11, I had no idea how much of a financial burden the disease was. All I knew was I couldnāt eat what I wanted, I had to prick my finger 10 times a day, and I had to give myself four shots a day. It was a real struggle dealing with all that. But it was also a real struggle for my basically single mom to pay for all of the lifesaving, extremely overpriced supplies. Oh, and then double that for my younger sister as well. I was the second one to be diagnosed in less than a year.Ā
“My mom had to buy double the amount of insulin. Double the needles. Double the test strips. Double the ketone sticks. And she didnāt have a choice. We donāt have a choice.
“I am now 21 and have health insurance, but I struggle to pay for my supplies. A bottle of insulin that lasts me a little less than a month is on average $40-$60. Test strips per month are $80. My supplies for my insulin pump including cartridges, sites, and sensors are about $300-$500 every two months. Every month, I stress over being able to afford my supplies. Every month I worry about being able to stretch my insulin to my next paycheck. Iāve recently debated starting to cross the border to buy my insulin in Canada.
ā Jasmyn Cooper, Davenport (recently moved to state of Washington)
āI was diagnosed with Type 1 diabetes in January 2000Ā when I was 12. I was lucky that I didn’t have to worry about the cost of insulin for the first 16 years, but then I was prescribed a form of insulin not covered well by my insurance, and I was paying up to $500 for a month-and-a-half supply. While I was eventually able to switch to a form of insulin that was covered better by my insurance plan, facing those kinds of bills at the pharmacy made me want to advocate for lower insulin costs, so that others didnāt find themselves struggling to pay for their insulin the way I had. I started encouraging people to contact their legislators and the media, and I got involved with the #insulin4all movement on social media.ā
ā Allison Bailey, Ames
āI have been a diabetic for almost 23 years. My dad was a diabetic who died when I was 14 from complications of a transplant/diabetes, so I know the importance of insulin and taking it the correct way. Up until this fall, I have always had pretty good insurance. I would pay anywhere from $0 copay to up to $100/month. I recently got my first job as a teacher and went on the insurance the district provided because I had no other option that I could afford. Since that time, I now have to pay co-insurance for the insulin, which is more than $750Ā per month. That is over one-third of my take-home pay.
“I don’t want to have to resort to rationing my meds. I don’t want to die. But it is becoming a situation where it might come down to me rationing my meds and possibly dying because the drug and insurance companies can’t figure this out.ā
ā Liza Osborn, Farragut
āWe are on Medicare, and yes we fall into the doughnut hole. We are fortunate to have pretty good pharmacy coverage, but that has absolutely nothing to do with my daily struggle to never be able to maintain this horrible disease or at times, be able to afford my insulin without charging up my credit cards because, there always isn’t an extra $500 to $1,000 a month to cover my co-pays, being dependent on both Humalog and Lantus.
“Some days, I can check my blood up to seven times a day and do insulin injections each and every time I eat anything, and that can be another four or fiveĀ times. So a typical day consists of up to 12 times a day or more of injections and testing. For a five-vial box of Lantus Solostar, the actual cost is $1,052.99, and my co pay is $277.12. Humalog Kwikpen actual cost last time I picked up a prescription was $736.99 and my copay was $192.77.
ā Lynn Marr-Moore, Ames
āI was diagnosed with Type 1 diabetes 24 years ago when I was 19. The bulk of that time I have been on Humalog. While I have fantastic insurance, I have seen my co-pay more than triple in the last three years. I now pay almost $500 a year just on insulin, never mind test strips and pump supplies, which are several thousand a year.ā
ā John Tagliareni of Ankeny
āIām a Type 1 diabetic, diagnosed on Monday, Jan. 23, 1963. I just celebrated my 56th year living with this disease. When I started taking injections it was with glass syringes and stainless steel needles that needed to be sterilized every other day. When I first saw disposable syringes in 1967, I spoke to my parents about them and how wonderful it would be to use these. The response: How are we going to pay for them?
“Today, that same question is being asked of insulin. Iām so blessed that Medicare is paying for my lifesaving liquid gold. I use Humalog rapid-acting insulin in my pump. Yes, different pharmacies have different costs. But my four bottles cost $1,266.92 for a 90-day supply. This breaks down to a cost of $316.73 per bottle.Ā Enough is enough with the sharp increase of this lifesaving drug. Yes, a small increase because of inflation, but insulin is a lifesaving drug. I must have it or my life will end.”Ā
ā Steven Renner, Johnston
“Speaking as an endocrinologist, this is something we prescribe daily. For many, insulin is not just about maintaining health, but a matter of survival. A person with a complete lack of insulin production, such as a Type 1 diabetic, requires insulin to survive. It is frustrating and tragic to see patients who are rationing their medications to make them last longer because they could not afford them, or having to decide which of their medications they can and cannot afford. All of us in the field hope to see the day when insulin (indeed, all medications) becomes much more affordable to our patients. However, unless there is enough outrage to trigger a paradigm shift, it is something I doubt will happen. In the meantime, my patients continue to suffer.”
ā Dr. Teck Khoo, a Des Moines endocrinologist
Read or Share this story: https://www.desmoinesregister.com/story/opinion/editorials/2019/02/06/struggling-drug-costs-i-quickly-learned-ration-my-insulin/2772054002/