They are all in on it: a system-wide problem

This is reposted from my wiki.
It is basically a more fleshed out version of highlights and lowlights of my insuradventures (er-misadventures) written during the time I was under the should-be-illegal coverage at Brandeis University. An Author's bias should be fully noted, but also note that it's all true!

"My insurance company is trying to kill me. But this isn't new. I've felt this way about many of the insurance plans I've been on. This time it's different, though. I live in a state that purports to cover all of its residents. I actually had one insurance agent, after explaining all of my issues, tell me: "But there's health reform."

My biggest piece of advice to anyone asking for it is: don't get type 1 diabetes, even in the United States--rather, especially in the United States.

I was diagnosed with type 1 diabetes in 1996. I was 13 years old. My mother didn't have insurance at the time, and it's been spotty coverage ever since. My tumultuous relationship with the sub-standard and costly type 1 diabetes care in America started with a Medi-Vac ride from Great Barrington Community Hospital to Bayside Medical Center in Springfield, Mass., a $6,000 ride that landed on my mother (but was eventually covered through Medicaid after the fact).

My first encounter with insurance companies was when I went off to Florida State and figured I wouldn't burden my parents anymore but would instead find my own coverage. I couldn't have been more misguided. The university-offered insurance plan had an 18-month waiting period for "pre-existings." In other words, they would cover me for everything except diabetes care for the first year and a half. After spending some time looking for a loophole, I ended up in the public clinic in the worst part of town, crying to social services that I was going to die without my insulin (this wouldn't be the last time). I finally figured out that I could return to my stepfather's insurance plan and learned how to hoard my supplies (also not the last time). I spent most of this year ordering my supplies like clockwork, rationing myself to testing as few as two times per day, and stockpiling syringes by reusing them up to ten times each. I knew a needle was done when it wouldn't puncture my skin anymore.

I should mention that I suffer from wanderlust. Not every step in my life has been well-thought out, and there have been some impulsive decisions. But for the most part, I'm just someone trying to live healthfully and contribute to the world in a positive way. I have lived to see a lot of life changes, and just as many insurance changes. The lowest point in my healthcare was while working as a long-term temp for a publishing company in California in 2004 and 2005. The temp agency told me that I could buy a discounted individual plan through them, so I called up Blue Cross and Blue Shield of California.

"Thank you for calling Blue Cross & Blue Shield of California. How may I help you?"
"Yes, hi. I'm interested in buying an individual plan."
"How many people in the family?"
"Just me. Just an individual plan for me. I'm a diabetic. Type 1."
(Sound of typing.) "I'm sorry, we don't cover type 1 diabetics."
"Excuse me? I'm interested in purchasing the plan outright."
"I'm sorry, we don't cover type 1 diabetes under individual plans."

I truly didn't know what to do. If a company hires someone and offers them health benefits within the group plan, the individual cannot be denied coverage altogether because of a pre-existing condition. I wasn't eligible for the group plan as a temp worker. I also didn't qualify for my stepfather's plan (I was over 18, and not a full-time student), and MediCal was only for families, pregnant women and old people.

I found myself once again crying to social services, this time in San Benito County, that I was going to die without my insulin. It worked. I was put on a county plan specifically for people who fell through the cracks. I had to go to a public clinic, where the doctor could see me for 15 minutes at a time, usually not enough time to write a proper prescription. My first visit, I walked out of his office with a scrip that read: "test strips, insulin." Needless to say, the pharmacy wouldn't accept such vague descriptions. To this day, I'm not entirely convinced that the program distinguished any difference in coverage between type 1 and type 2 diabetes treatment. I was allotted 2 strips per day, and the type of insulin covered was Regular and NPH. Mind you, these types of insulin will work, but they are kind of like the Model T of insulin. Sure it's transportation, but most people aren't going to want to commute in it. And I was asking for a Ford Focus, not a Bentley. Insulin pump therapy was rejected as "experimental" (it has been around for 20 years!). I don't remember getting my HA1c (comprehensive bloodwork that lets you know your blood glucose averages over the past few months) during that time, but it was definitely a struggle to keep my levels under control when I was only testing twice a day.

I ended up going back to finish my degree, and thankfully back on my stepfather's fabulous teacher's health benefits through San Benito High School. I resumed hoarding, I immediately got on the insulin pump, Cozmo. I leisurely visited my doctor at Stanford Hospital every three months. I chummed it up with the diabetes educator, I had bloodwork taken like clockwork. I even went on Symlin two months after it was FDA-approved! But beauty is always temporary, and I found myself once again disqualified from the plan when I graduated. That was the first time I moved to Israel. I wanted to travel there for an internship as part of my journalism program, but also because of their socialized medicine.

As a non-citizen, I didn't actually get to enjoy socialized medicine as I had originally thought, and I ended up back in California 7 months later. (Meanwhile, I used up my stockpile of supplies during this time.) As luck would have it, both of my new part-time jobs offered me Kaiser-Permanente healthcare benefits. The great thing about double coverage on KP is that you don't have any co-pays. I resorted to my old tactic of hoarding: I got another insulin pump, the Mini-Med's popular Paradigm 722 (to my credit, it proved to be a good move when my original pump company discontinued their model). I only got the pump after nagging my doctor for weeks, and finally got the paperwork in on the last day of my double coverage. When I downgraded to single coverage, my durable medical equipment benefits (insulin pumps and supplies fall under this category) was 80% covered, which would have left me with a $1,238 bill for the pump, not to mention $90/month for the supplies (above and beyond the normal doctor visits and Rx copays.) It proved to be a good move to push for the pump.

Among other reasons, I once again moved to Israel, this time as a citizen and able to fully enjoy the security of socialized medicine. The system isn't without its flaws, but I certainly have respect for an endeavor whose guiding principle is that every citizen deserves proper healthcare.

Here's how it works: employers and employees pay a reasonable amount of the salary to healthcare taxes. This covers basic health insurance. The employee chooses one (out of four) health funds. This allows for some competition among these companies. Beyond basic coverage, you can buy a gold membership and other services. Most people do; I did. Under the basic plan, there was an end-all-be-all $200 monthly cap. This means that I could not pay more than $200 per month on my necessary healthcare needs even if I wanted to. Most months, I spent about $100, which I found pretty reasonable. I went to Bellingson, the best diabetes clinic in the country. The bureaucracy was pretty thick to wade through, but at the very core, I trusted the system had my best health interests at heart.

I decided to return to the U.S. after another half-year stay in Israel. I came back to go to grad school for education and become a teacher. Even though I love writing and journalism, my experience is that freelancing rarely provides healthcare benefits. And I've already discussed how successful I was in purchasing an individual plan through private insurance companies. My only insurance-related consolation was that I was moving to the only state that has compulsory health insurance: I can't even entertain the idea of not having health insurance.

It panned out. I didn't have any income when I first moved to Massachusetts, and they enrolled me in MassHealth Essential, no questions asked. MassHealth was wonderful. I found a great diabetes supplies company that worked with MassHealth and sent out my prescriptions like clockwork. I gave them my insurance information once, and they automatically withdrew my copay from my bank account ($3 for insulin). It was almost too good to be true. And it, too, ended.

As soon as I started grad school, MassHealth dropped me. After some investigation, they told me that students aren't eligible for MassHealth.

"Why not?" I asked the agent, after having been on hold for 28 minutes.
"We have health reform. If you're a student, you can get coverage through your school."
"But it's not coverage. Don't even think about it as coverage. It doesn't cover anything. Can I drop it and go back on MassHealth?"
"No, students aren't eligible."

So why do I want to drop my private insurance and go back on the government-offered plan? My current university plan is called Harvard Pilgrim. After some investigation, I discovered the following:
There is an annual $2,000 maximum payout on prescription benefits. Once I reach this amount, I'm on my own. This might be OK if the costs of medications weren't so inflated, but my insulin is $144 per bottle, and I use two each month.
Test strips are also under prescription benefits, whereas many other health plans deem it as part of durable medical equipment because it is used in conjunction with the pump.
The insulin pump, and all pump supplies, are classified as prescriptions. This is beyond counter-intuitive: an insulin pump is quite literally durable medical equipment. You don't even need a prescription for an insulin pump. (Durable medical equipment benefits are covered 100%, but after Harvard Pilgrim's jerry-rigging, the pump is not deemed DME, nor is anything else as far as I can tell!) The pump, as I've described before, is a proven insulin dispense system that has been around for more than 20 years. I've been attached to my pump for 5 years now, and it has improved my quality of life in immeasurable ways. The pump costs around $6,190, which means that if I needed a pump while on this plan, I'd be shelling out more than $4,000.
There is a $100,000 per lifetime, per illness maximum. Once I reach this limit for diabetes, I'm on my own. To their credit, most students aren't under this type of plan for too many years, but still.

Here's what I'm facing: My costs are fixed and necessary. I die without insulin. I can't cut down in significant ways. It would be a huge decrease in quality of life if I were to go off pump therapy. (Being on the pump allows for great flexibility, especially when it comes to exercising. Going off the pump and back to shots would mean inhibiting my ability to exercise and be flexible in my schedule.) My per-month costs are (this is the amount of money spent on my behalf, but remember that once this amount hits $2,000, insurance stops paying for it):
$288 - $432 for insulin (two to three 10 mL bottles, or 1,500 to 2,250 units/50 to 60 units per day, accounting for unit loss while switching reservoirs)
$266 - $399 for infusion sets (20 to 30 reservoirs)
$66 - $99 for reservoirs (20 to 30 reservoirs)
$138 - $170 for test strips (125 to 150 test strips)
Total Cost: $758 to $1,100 per month
Note: the insurance company has negotiated prices with the medical companies, but I am not privy to this information as a consumer, so I cannot plan accordingly.

In other words, my insurance company will cover costs for a life-threatening, chronic illness for about two months. This is not coverage by any stretch of the imagination. Health reform in Massachusetts seems to have forgotten type 1 diabetics who are older than 25 (not eligible for most parent plans) and full-time students.

My opinion is that this type of coverage should be illegal. These companies are making so much money covering healthy college students who rarely visit a doctor. Type 1 diabetes is an unpredictable, non-preventable lifetime condition.