The cost of staying healthy with T1D can range from $12,000 to over $20,000 per year at the “retail” rate of insulin, glucose test strips, insulin pumps and supplies, insulin pens, lab tests, glucagon, specialist visits, etc.
With or without insurance coverage, staying healthy is a significant financial burden.
Where is JDRF in advocating for insurance coverage of T1D? For example, what has JDRF done to point out the absurdity of low Quantity Limits for glucose test strips for those with T1D? What has JDRF done to increase transparency by health insurers regarding T1D coverage?
My observation: JDRF has done
NOTHING
and neither has the American Diabetes Association (ADA).
Isn’t it ironic that November is National Diabetes Month and also Open Enrollment for health insurance?
Also interesting is that all the supplies for an insulin pump and CGM are classified as DME, which means we have to burn through our deductible before coinsurance kicks in. I understand that these are not prescription drugs, but neither are test strips. Like test strips, these supplies are all disposable. If these supplies were classified like test strips, at least then we would only be subject to the co-pays which are much less over the course of a year.
Please check facts before making broad statements such as presented. Before I go on, I do hope that JDRF, ADA and similar organizations with voices to be heard will CONTINUE to speak out on our behalf in healthcare matters.
For many years, I have been buying glucose BGL checking strips with a prescription and the “… at least 8 times per day” has always been supplied; and at least under Medicare my co-pay, without deductible is $0.00.
Over the years, the endocrinologist with whom I have been consulting have written prescriptions for insulin pumps and I’ve paid only 20% of the discounted cost.
JDRF and ADA have done much to provide and environment for learning, education of medical professionals, research and innovation of products that have enabled me to manage my very brittle diabetes for 60 years. As those who have read my writings on this and other sites over the past years might recall hearing me say " managing T1D is a 24/L concern" where “L” means lifetime; when I was diagnosed in the 1950’s lifetime meant less than 10 years.
JDRF and ADA have been great advocates for research, treatment, and employment. JDRF has also advocated about CGM coverage for those on Medicare, but what about the thousands who have T1D and are NOT covered by Medicare?
In 2016 and the foreseeable future, having insurance that fully covers T1D supplies is a matter of chance. While Healthcare.gov will provide estimates of care for T2D, those costs will be considerably different for T1D. None of the insurers I’ve reviewed online or spoken with by phone provide transparency about their DME coverage for CGM or insulin pumps; many omit the details of out-of-pocket costs for insulin. These are the facts of buying insurance, not Medicare, while having T1D.