In July, I went to order a refill of my pump and was refused. My account was overdue, and my pump company wouldn’t issue a refill until I could pay at least $400 of the $1200 I owed. I didn’t have $400. I am a freelance writer and stay-at-home mom with a knack for stretching my husband’s paycheck. I’d been making small monthly payments of about $50 because that was all we could afford, but now they wouldn’t send me any more. So I went to the pharmacy and bought a box of syringes for $25. I didn’t want to go back to multiple daily injections, but I didn’t see that I had a choice.
It turns out that I’m not alone. A member of tuDiabetes writes, “I am no longer pumping…the supplies are too expensive, since I am starting my first semester of college. I just can’t afford it…which makes me really sad.” Another member writes, “My survival has come to rely on the kindness of others. Sometimes I have to choose to live without heat in the winter or electricity in order to afford my insulin and test strips. I wait for months and endless hours to attend the free clinic (which is overloaded with patients) and I haven’t seen an endo in years because I can’t afford it. There has to be another way…”
One of the first things my pediatrician told my mom when I was diagnosed in 1985, at 14 years old, was that diabetes is one of the most expensive diseases. The expense didn’t really register with me until I graduated from college and was kicked off my parent’s health insurance plan. I had to find a job so that I could pay for test strips, insulin, and syringes instead of new clothes and shoes like my friends. Suddenly I was thrown into the adult world of trying to manage my finances. The cons (money spent on visits to the doctor and medical supplies) were immediate, and they often overshadowed the pros (avoiding the possibility of complications twenty years down the line).
In this time of job loss and economic recession, many people with diabetes are making the choice to pay the mortgage instead of their medical bills. Many people are choosing to skip doctor appointments and not refill certain prescriptions. Dr. Liz Stephens, type 1 diabetic and endocrinologist in Portland, Oregon, says that cost is a huge issue and that many patients are often embarrassed to bring up the issue to their doctors. “I noticed an increase of no-show rates with the downturn of the economy. We can offer samples and assistance programs, but it’s really challenging.”
The American Diabetes Association reports that the typical monthly cost to treat diabetes runs from $350 to $900 for those who do not have insurance. Statistics indicate that diabetes costs the U.S. $23.7 million each year, and expenses are expected to rise with the increased rate of type 1 and type 2 diagnoses. In the December issue of Diabetes Care, a report titled Projecting the Future Diabetes Population Size and Related Costs for the U.S. concludes, “Without significant changes in public or private strategies, this population and cost growth are expected to add a significant strain to an overburdened healthcare system.”
These reports are not surprising or groundbreaking. While misconceptions about diabetes are common, ranging from “You got diabetes from eating too much sugar” to “You can’t have babies because you have diabetes,” one universal truth is that diabetes is expensive for hospitals, Medicare, insurance companies, and, especially, diabetics themselves.
Digging into my own financial history, I estimate that the typical expenses for someone living with type 1 diabetes can range anywhere from $800 to $1500 a year depending on treatment.
Costs include: (based on my insurance prescription plan)
- $25 for a box of 100 syringes (average of 3 shots a day per needle, 3 ½-month supply)
- $80 for a box of 100 test strips (testing 10 times a day, three-month supply)
- $450 for a box of 30 Omnipods, based on 50 percent insurance coverage. (One pod lasts three days, one box is a 90-day supply)
- $40 for a bottle of insulin (One bottle of Humalog lasts an average of one month if using the pump, two weeks if using MDI)
The approximate yearly total for pumping is $2500. The approximate yearly total for for MDI is $900. Based on this rough calculation, if doctor visits average $1000 a year, diabetes has cost me $23,000 to $50,000 (after insurance) over the last 25 years of my life. Living on a fixed income, I can’t help but think about where else that money could have gone.
Kelly Love Johnson was diagnosed with type 2 diabetes at 30 years old and was thankful that she had good insurance. After she left her job, however, she was only covered by COBRA until the end of December 2009. Kelly says, “I spent about two months trying to get personal coverage and was denied by every single company I applied to because of my pre-existing condition – diabetes. I moved to Austin in January for a new job, but my new job does not include health insurance, and I have been uninsured for more than eight months now. When the healthcare bill passed earlier this year, I had high hopes because it included a law that insurance providers could not turn you down for personal coverage due to pre-existing conditions. Then I found out that it doesn’t go into place until 2014.” Kelly found a healthcare clinic through the Catholic Healthcare System and feels fortunate to live in Austin, Texas, with its good public healthcare. Kelly’s hope for the future is that either the company she works for will continue to grow and be able to offer health insurance, or that she’ll be able to get reasonably priced personal coverage in 2014.
Elizabeth Todd-Heckel, MSW, CDE, a type 1 diabetic for 43 years and the only registered diabetes educator and social worker in South Carolina, says, “Diabetes is an expensive disease, as we both know. For patients with limited resources, we often work with our social worker at the Family Practice Center to access supplies.” She says that the biggest issue for people living with diabetes and struggling to pay for supplies is test strips. As Kelly says, “I’ve been testing less often to save on lancets and test strips because I still have to pay (a portion of the cost through the clinic) for those.”
Tips on managing medical costs:
- Ask your doctor to write the prescription for “as needed” on insulin and test strips
- Use mail order prescription services
- Ask your doctor for samples at each visit because they often have an excess, and drug companies don’t seem to mind
- Ask your doctor for generic drugs
- Don’t be embarrassed to ask your doctor for advice; you are not alone
- Drug companies that sell insulin or diabetes medications usually have patient assistance programs. Such programs are available only through a physician. The Pharmaceutical Research and Manufacturers of America and its member companies sponsor an interactive website with information about drug assistance programs at www.PPARx.org.
- Department of Agriculture’s Women, Infants, and Children (WIC) program: Food, nutrition education, and access to healthcare services are available through the WIC program, and having diabetes or gestational diabetes is considered a medically based nutrition risk: www.fns.usda.gov/wic
- Partnership for Prescription Assistance (PPA): This program brings together America’s pharmaceutical companies, doctors, other healthcare providers, patient advocacy organizations, and community groups to help qualifying patients who lack prescription coverage get the medicines they need through public or private programs to obtain free, or at-cost medications. The PPA site (www.pparx.org) offers an online questionnaire to determine program eligibility for more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. To access the Partnership for Prescription Assistance by phone, you can call toll-free 1-888-4PPA-NOW (1-888-477-2669).
- Flexible Spending Accounts: One of the few ways workers can cut out-of-pocket medical expenses is through medical flexible spending accounts (also known as a flex spending account or FSA). A medical flex account is an employer-provided benefit that allows you to contribute a set amount from your paycheck in order to cover out-of-pocket medical, dental, and vision expenses such as health insurance co-pays, uninsured treatments, or even over-the-counter drug purchases. Using this concept of “pre-tax” dollars can reduce your medical costs by as much as 30 percent depending on your tax bracket.
- CPR: This program provides co-payment assistance to insured Americans who financially and medically qualify. (First come first serve, insulin only, not supplies) www.copays.org
I went without the pump for the summer and then asked my dad for help. I’m lucky to have a supportive family and grateful for the way the pump makes my life (as the mother of three young children) less chaotic, but it’s only a matter of time before my balance grows out of proportion again because nothing has changed with our financial situation. I’ve applied to the CPR program and am waiting to hear if I’m eligible for assistance. I’ve asked my endocrinologist to re-write my prescription for insulin so that I can get two bottles for $40 instead of one, but I can’t help thinking about diabetics who don’t have these resources.
When the money in our bank account gets too low, I’m still tempted to go back to syringes. I wonder if making my life less hectic is worth the extra money. I realize that if I’m forced to choose between convenience and cost, I’ll have to go with cost.