By Jessica von Goeler
I have lived with type 1 diabetes for 50 years. I use a closed-loop insulin pump that relies on a continuous glucose monitor (CGM). I manage my condition carefully and consistently. I do everything the healthcare system asks of patients like me.
Stable care means access to medications, devices, doctors, and labs when my body needs them. It also means having confidence that access exists. That confidence disappeared in early February.
On February 2, I learned my family could not select a MassHealth plan as we had expected. No warning. No explanation. Just a system that would not let us move forward. My immediate reaction was visceral: WTF. No. Absolutely not.
This was not a mistake on my part. It was a knowledge gap created by silence.
When I became unemployed, I defaulted to COBRA because no one told me I had other options. Not my employer. Not unemployment. Not the COBRA administrator. I later learned during a welcome-to-unemployment session that the Massachusetts Connector could have been an option. That information arrived after my enrollment window had already closed.
COBRA cost more than my unemployment benefits paid me. I still chose it because I believed it was my only option to protect uninterrupted care for type 1 diabetes.
When my husband and I rolled off unemployment, we had no way of knowing we were eligible for state benefits like MassHealth. No notice. No trigger. No guidance. We figured it out ourselves, applied, and were approved.
Then we did exactly what we were told to do: we terminated COBRA. That is when the real damage began. For nine days and counting, my family has been without health insurance.
No one can explain the process. Every agency points elsewhere. Blue Cross says one thing. The COBRA administrator says another. MassHealth says neither is sufficient. I was eventually told I needed to contact my former employer from 15 months ago. That information was never volunteered, and no reasonable person would anticipate needing it.
Today alone, I have had more than ten communications with Blue Cross and the COBRA administrator. Most days look like this:. Tten to fifteen calls, emails, escalations, and contradictory instructions. One new piece of information arrived today: if MassHealth calls Blue Cross after 2:30 p.m., Blue Cross might confirm my termination. MassHealth has consistently said this is insufficient.
Blue Cross has known of my termination needs since February 4. It is now February 9. I am told to wait another 24 to 72 hours. That sentence has been repeated daily.
During this time, my daughter and I both had COVID. For someone with type 1 diabetes, this is dangerous. I went to urgent care at symptom onset and received Paxlovid on the final day we still had insurance. That was the last protected medical interaction I have had.
Since then:
There have been no out-of-pocket costs because we are not accessing care at all. That is not resilience. That is risk.
I have become dysfunctional under this stress. I am relying on Ativan to get through days filled with fear, rage, and administrative chaos. This situation has consumed nearly all of my time and most of my husband’s. We are chasing coverage instead of managing health and looking for jobs.
This remains unresolved. What finally helped was escalating outside the system, calling people who were never supposed to be part of this process. None of this should have been required. I believed my employer, unemployment services, and the COBRA administrator were required to explain my coverage options. They did not.
This failure is catastrophic for anyone with:
One word explains this harm: communication. Not forms. Not rules. Not processing time. Communication.
I am angry because this was preventable. I am angry because I followed every rule. I am angry because surviving type 1 diabetes for over 50 years did not prepare me for surviving the insurance system.
And I am still waiting. I still need insurance coverage. My experience demands adequate health insurance without gaps.
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This situation exists because:
The harm is immediate. It is medical. It is preventable. Adequate insurance is not optional for people with diabetes. It is medical safety.