Read Laura’s story. I’m adding mine to show this is not unusual - it’s basically the reality that every diabetic gets hit with as they become a legal adult. https://twitter.com/kidfears99/status/1360555955512094722

At 22 I was about to begin my senior year of college when my mom told me that I had aged out of my father’s family plan. We were lucky. Her job offered a plan that allowed children to stay on until 25 IF the child was a full time student, so she took out a plan for the 2 of us

It required referrals and was more expensive, but it subsidized my medication and care. When I graduated in 2007, all of the jobs in my field of study had evaporated - a harbinger for the recession that was just starting to hit. I couldn’t find a job with benefits

I took a job waiting tables and enrolled in community college so I could keep my health insurance. After a year and a half of interviewing everywhere, taking a full class schedule for a degree i knew I’d never earn, working full time and living at home, I finally got my first job

I worked for a well known publishing company in DC for six months before the sagging economy and transformation to a digital world caught up to them and they let me go. This was just after Obama’s first election and he’d signed an EO subsidizing COBRAs

I found another restaurant job where I could make enough to support myself. Unusually at the time, the restaurant company offered insurance to hourly employees, but they didn’t subsidize the premiums and the coverage was not nearly as good, so I made a decision

I would stay on my COBRA as long as I could while trying to find other work. I was told open enrollment was the following July, so I had roughly one year of grace time before I’d have to take the poorer coverage and expense.

No one was hiring. I was told my original employment was a blip, I didn’t have enough experience, etc. I did well enough waiting tables, but couldn’t find another job, so I prepared to ask about getting onto the restaurant plan. In July when I asked a manager he looked shocked

He said, “Open enrollment was in June. You didn’t know?” They’d announced at 1 shift meeting (out of 14 every week) and decided that was enough. I’d missed it. I went all the way up to corporate and was told even if I quit and came back, I wouldn’t get a new grace period

I had two months left of coverage. I called every insurance company, but they all said no as soon as they heard “diabetic.” I cried a lot on those calls and maybe one or two agents showed sympathy. Most hung up. I found out that an existing insurance plan can’t just kick you off

They have to offer something called comparable coverage, but that hasn’t been well-defined legally, so Aetna’s idea of “comparable” was $725/month for a $7500 deductible with no prescription coverage and no durable medical equipment coverage. So no help with insulin or pump

I talked to my parents and they agreed to help subsidize the incredible monthly price tag, because I was afraid if I didn’t take it, I’d face an additional year of coverage exclusion for my diabetes treatment under a pre-existing condition clause

During that 10 months, the only reason I wasn’t financially devastated was due to my parents’ help and the help of a dear friend whose identity I will never reveal. They were a nurse in DC and they said sometimes patients were prescribed insulin during their stay but weren’t T1

They told me that the hospital required nurses to toss the partially used bottles, but they’d heard about my situation and said, “If I can, I’ll pocket them and call you.” That’s how I survived. I never knew when the next bottle would come. I stretched each vial as far as I could

I was terrified I’d go into DKA and be financially ruined or die, so I walked the knife’s edge for 10 months. I did have to fill a prescription once. I went to Costco and paid $550 for three vials (2010). My parents knew about the situation but I didn’t tell them I was rationing

I survived. But so many don’t have the same access to help that I had. I honestly feel there is still a lot of trauma around that time for me. The healthcare debate was going on in the background and if I mentioned my story people would say, “Why should I have to pay for you?”

They didn’t understand that they are already paying for people like me. Since then, I went into tech - now a stable, lucrative field. I thought about opening a business once, but I can’t. I need employer subsidized care even under the ACA. There are a lot of jobs I can’t take.

In the 10 years that have passed, the price of insulin has continued to sky rocket. This is for one reason and one reason only. Phrma is accountable to share holders and not patients. No one tells them they can’t, so they increase prices for a drug that hasn’t changed in 20 years

We need federal PRICE caps on insulin. Not copay caps that only help those lucky enough to find a job with benefits. I was always told in school that the government would step in when capitalism failed. Where are they? We’re dying #Insulin4All