Guaranteed Healthcare

So - what would you do if your State had suspended all applications for accessible health care and no insurance company would touch your child's pre-existing condition and you had applied to over 180 job vacancies in the last 8 months, many of which were minimum wage (even though you can make many times more than that when you are self employed but no insurance will touch her) .......... but were told that the average number of applicants for those minimum wage jobs was 40-50 per vacancy so thanks for spending over an hour per application online but you didn't get the job .... what would you do? Would you just hope?

How would you fill her prescription for epi pens at an average cost of $60 per auto-injector when she needs a minimum of 6 double packs to stay safe? (yes that's $720) and these expire every year. What would you do if your allergist told you that she refuses to fax the permission slip to the school, which will not administer her life saving epi-pen without it, until you bring your daughter back in for a $150 re-assessment of a condition she can do nothing to track or alleviate, even when she knows both parents no longer have insurance, cannot get insurance, and have lost 2/3rds of their income this year alone .... what would you do?

My daughter had her first episode of anaphylaxis 4 1/2 years ago in the back of our car. She had just had a swimming party for the end of school, 3 weeks before her 9th birthday. I had no idea what was happening to her. She sat in the back of the car, panicking, telling me that her throat hurt. I knew that strep throat had made it's last minute rounds of the school that month, so I reassured her as best I could from the drivers seat, that we would be home in a few minutes, and that I would take care of her then. Her high pitched voice and panic was very unusual for her. This was a child who had climbed 40 foot trees and endured all manner of physical hardships in the course of her adventures through childhood and had always taken it on the chin in an almost alarmingly stoic manner. The panic almost made me turn around and take her to an emergency room ... somewhere inside my rationalizing that this was sudden onset strep, part of me was deeply alarmed by her emotional distress.

Four and a half years later, call me a bad parent, but I have actually lost track of the episodes. Rachel suffers from Idiopathic Anaphylaxis. This means that she goes into anaphylactic shock at random intervals for reasons we have never truly identified. Her immune system is on a rampage, and we have no idea why. Sometimes her episodes are 9 months apart, and I start to relax, thinking that the worst is over. Sometimes they have been a week apart, and her life seems destined to end too soon. The endless rounds of allergists, specialists, consultants, tests, labwork, bloodwork, skinwork, urine etc left us empty and hopeless, and thousands of dollars poorer to no effect. Last year her Dad was laid off from his corporate job. The health coverage we had had been a bit skinflintish, but it had been there.

I started the rounds ... the Healthy Families Health care through the State of California had suspended all new applications due to the State's financial distress. We had made too much that year for MediCal, so I started calling insurance companies. It was refreshing at first - such nice customer service! Then we got into preexisting conditions. I mention my daughters anaphylaxis. There is a sudden silence. I am asked the cause. I tell them we do not know the cause. Another pause. I am asked for the intervals between episodes and other immune symptoms. I tell them, reluctantly, that a couple of years ago her immune system went crazy and all the skin on her face started to burn and fall off. It was an awful time, three weeks of living hell while she suffered a burning and scalding that would not stop, therefore would not heal. Her skin fell off in my hands and after I had held her while she cried herself to sleep, I crawled into my bed and sobbed until I was exhausted. Only I don't tell them that. I keep it calm and clinical.

When all was said and done, I was offered an outrageously priced plan with the bright idea that her pre-existing condition could not be covered. I lost it with one nice, sycophantic insurance agent. "IF WE TAKE AWAY THE ANAPHYLAXIS, I CAN BUY MY OWN BANDAIDS YOU IDIOT!" Because this child is athletic and healthy in every other way but this. Now I have some sporadic but very well paid work as a consultant abroad. I have to leave my children for weeks at a time to work in England. I live with the quiet agony of the phone call that tells me she has had another episode. I live with the sheer terror that one day she will have 'the big one'. You know the big one .. that's the one that comes on suddenly, hits her hard, and she dies within minutes. What if I'm not there? What if she slowly suffocates without anyone to help her? What if she dies alone, or amongst strangers?

Right now she is on a field trip with her class for four days. I got to give every parent a lesson in epi pen delivery. It's a blast watching parents try to grasp the enormity of what they are doing. Sometimes they refuse to take her, or have her on sleepovers. I don't blame them; they usually balk at the end when they (always) ask me "What do I do if it doesn't work? Do I call 911?" I reply, usually with a hint of humor, "You can, but if the two epi-pens haven't stopped the reaction, she's going to die before they get there. But please call them anyway, there's always a chance." All this, and no insurance.