Type 1 Diabetes and Insurance Coverage: The Eternal Fight to Live
- 4 days ago
- 4 min read
When our family chose health insurance, we did what many families in the United States do.
We selected coverage through my husband’s job and chose the premium that best fit our monthly budget. At the time, chronic illness was not part of our reality. We assumed insurance was insurance — and that if something serious ever happened, we would be protected.
We were wrong.
When a Diagnosis Changes Everything
When our son was diagnosed with Type 1 Diabetes, our entire world flipped overnight.
Along with learning how to keep our child alive — counting carbs, checking blood sugars, learning how insulin works — we were suddenly faced with another overwhelming challenge:
Understanding how health insurance actually works.
We quickly discovered that not all insurance plans are created equal — especially when you live with a chronic condition like Type 1 Diabetes.
Our plan had:
A deductible over $7,500
Coinsurance even after meeting the deductible
Prior authorizations for life-saving insulin
Limited or confusing coverage for CGMs and insulin pumps
We were grieving our “before diagnosis” life while learning an entirely new language: deductibles, formularies, DME, step therapy, prior authorization.
The Financial Reality No One Prepares You For
The financial hit was heavy — and frightening.
At one point, our son’s CGM supplies alone cost over $650 every three months. Insulin refills required constant phone calls, denials, appeals, and waiting.
Every month felt like another battle just to access what our child needed to survive.
Like many families, we reached a breaking point. We created a GoFundMe simply to stay afloat with medical bills and medications.
Asking for help was humbling — but necessary.
And here’s what I wish someone had told us earlier:
With Type 1 Diabetes, the cheapest monthly premium is often the most expensive choice long-term.
What We Learned About Choosing Insurance with Type 1 Diabetes
After diagnosis, insurance is no longer about “just in case.”
It’s about:
Insulin
Endocrinology visits
Lab works every 3 months
Emergency care
CGMs
Insulin pumps
Test strips
Glucagon
Ongoing supplies
When open enrollment came around, we approached insurance very differently.
Instead of focusing on the monthly premium alone, we focused on:
1️⃣ Deductible and Out-of-Pocket Maximum
Two numbers matter more than anything:
Deductible – What you must pay before insurance starts sharing costs
Out-of-Pocket Maximum – The most you will pay in a year before insurance covers 100%
For families with T1D, you will likely meet your deductible every year.
Instead of asking, “What’s the cheapest premium?”
Ask, “What’s the total yearly cost if we hit the out-of-pocket maximum?”
Sometimes a higher premium plan actually costs less overall.
2️⃣ Insulin Coverage (Formulary Matters!)
Every plan has a drug list called a formulary.
Before enrolling, ask:
Is my exact insulin covered?
What tier is it?
Does it require prior authorization?
Does the plan use step therapy (forcing you to try another insulin first)?
Insulin should never be a surprise expense.
If it’s not clearly covered — do not assume it will be.
3️⃣ CGM & Pump Coverage (Pharmacy vs DME)
This is where many families get blindsided.
CGMs and pumps may be covered under:
Pharmacy benefits
OR
Durable Medical Equipment (DME)
The coverage rules and costs are completely different depending on where they fall.
Ask:
Which brands are covered?
Is it pharmacy or DME?
What percentage is covered after deductible?
Is prior authorization required?
This one detail can mean hundreds — or thousands — of dollars difference per year.
Finding Help: Advocacy Changed Everything
Out of desperation, I began researching every possible resource.
That’s when I discovered the Dexcom Patient Assistance Program.
Our CGM cost dropped from $650+ to $50 every three months.
That single discovery changed our stress level overnight.
We also learned to:
Fight denials
Keep records of every call
Request medical necessity letters
Use savings cards and discount programs
Speak directly with pharmacists about alternatives
It was exhausting. But it worked.
And this is something every family should know:
Insurance denial does not mean the final answer.
Appeals exist for a reason.
Other Insurance Protections Families with T1D Should Consider
Health insurance is the foundation. But it’s not the only protection that matters.
💼 Disability Insurance (Income Protection)
If a parent with T1D — or a caregiver — cannot work due to illness or complications, income stops.
Employer disability insurance is often the easiest to qualify for.
If offered, strongly consider enrolling.
It protects your paycheck if health interferes with work.
❤️ Life Insurance
Yes, people living with Type 1 Diabetes can get life insurance — especially when well managed.
Term life insurance is usually the most affordable and practical option for families. It protects:
Mortgage
Children’s future
Lost income
The key is applying when control is stable (A1C, blood pressure, no major complications).
Working with an independent broker can help you compare companies that are more diabetes-friendly.
Questions Every T1D Family Should Ask During Open Enrollment
🔹 Costs
What is the deductible?
What is the out-of-pocket maximum?
Are insulin and supplies subject to the deductible?
🔹 Medications
Is my insulin on the formulary?
Does it require prior authorization?
What happens if coverage changes mid-year?
🔹 Devices
Are CGMs and pumps covered?
Under pharmacy or DME?
What percentage is covered?
🔹 Support
Is there a case manager for chronic conditions?
How does the appeals process work?
If the representative cannot clearly answer these questions — keep asking.
What If Insurance Stops Covering Your Insulin?
This is terrifying — and unfortunately common.
Here’s what to do immediately:
Ask your doctor for a formulary exception
Request a medical necessity letter
File an appeal
Ask your pharmacist about temporary covered options
Contact manufacturer savings programs right away
Do not wait. Delays are dangerous.
The Most Important Lesson We Learned
Living with Type 1 Diabetes is already a full-time job.
Insurance literacy becomes part of survival.
But here’s what I want every parent, every adult living with T1D to hear:
💙 You are not “bad with money” if medical bills overwhelm you.
💙 You are not weak for asking for help.
💙 You are not difficult for questioning your insurance company.
Advocating for coverage is not complaining.
It is protecting your life — or your child’s life.
The system is complicated.
But resources exist.
Appeals exist.
Assistance programs exist.
And you are not alone navigating it.
If our family had known then what we know now, we would have chosen differently from the beginning.
My hope is that our story helps you choose wisely — before crisis forces you to learn the hard way. 💙
