I know our country isn't done with this fight. There are many sides and like most people I do see good and bad. But today was a lesson in gratefulness for something that seems so basic: an infant had a good surgeon cutting into some tender tissues and skillfully removing a large tumor, and if it grows back the skillful surgeon will repeat this.
I'm the very weird person who is uninsured but not getting insurance through the affordable care act without paying a penalty. My Medicare starts before that would kick in. I can tell you that if I could choose Medicare and an ACA policy it would be the ACA policy. I also can say that I am glad for the changes that are coming. Not all are good. Of course they aren't. But if no new mother cries ever again because she knows that many babies are born with much worse conditions than their own child and these babies are not covered by insurance and consequently don't receive the absolute best care imaginable, which they deserve. Every baby should get the surgeon who operates on their rare tumor the most. Every adult should not live in fear of the asthma attack or injury that requires use of the local hospital (which I hate anyway; awful experiences and awful care, but in an emergency you sometimes have no choice; I always should be at Cleveland Clinic because of my MAOI/psych med issues but that's not realistic).
While I am grateful beyond words for Cleveland Clinic's charity care program and all that it has helped cover I also know that this program comes partly from having higher rates for insured people. Which means that co-pays are higher and other people may struggle. I paid co-pays for years and I know they aren't cheap. Charity care is a stop-gap. It is not a solution.
I have made it through this uninsured time as well as anyone could hope to. All of those things pulled together for me. However I have wondered many times what would happen if there were an emergency. Back in the spring I fell down a flight of stairs face first. Had I broken a bone I could have made it to Cleveland. If I'd had head trauma I would have been forced to use a hospital close to home. If I had an asthma attack I couldn't wait hours to get to Cleveland. When I was on vacation I had a severe migraine that my doctor said I should go to an ER for painkillers to break it up. I couldn't because I would have had to pay for it. I just got dental insurance. It has a 6 month waiting period for fillings, crowns, root canals, etc. I have a tooth that already has a crown that I suspect either needs a new crown or possibly a root canal. If I can't make it until April that is 100% my responsibility.
I have been without insurance for nearly 2 years now. I have made it through because of Cleveland Clinic's incredible charity care program; medication assistance from pharmaceutical companies, especially Astra-Zeneca which has given me something like $40,000/year of medication; a family doctor who trusts my judgment and has treated me via email for all of this time; and charity cards for pharmacies that have reduced my out of pocket drug costs. I also have been able to use this one pharmacy chain that is local to northern Ohio and has drastically lower prices than others.
I don't think I've said much about this here but I am facing some of that type of coverage issue. I'll have Medicare in February. However there are a lot of deductibles and I realistically need an additional policy called "Medigap". Unfortunately those policies are not required in this state to cover disabled people and when we are covered it is very expensive compared to someone who is 65. I'm not sure what will happen with this.
The changes to insurance are also important for her. It used to be that she would have had trouble finding coverage if there was ever a break in her insurance. That happened easily when your insurance dropped you while you were in college as happened to me. It was 8 months before I could get coverage through grad school. There are no lifetime maximums. That's important because she is a baby and if something bad happened she could hit a maximum while on chemo. After grad school I had a job without insurance. I nearly had to quit it because it was so hard to get insurance because of my history of plain old depression. One company declined to cover me because I didn't have 28 day menstrual cycles. Eventually I got terrible coverage with a $10,000 mental health deductible and no psych hospitalization that required me to pay 30% of medication costs. By the time I finished the clinical trial I was in I knew I had to get group insurance and i did. I was ready to leave that job but I would have had to no matter what because 30% of my meds was a big proportion of my income.
Insurance means her parents don't have to decide if they can risk skipping tumor markers. Insurance means that if she needs more surgery (and I pray every day that she doesn't) that it will be covered. If there is a suspicion that she has recurrence she can have an MRI and be sedated and it won't bankrupt her parents.
The answer is that it could have been bad. Realistically they could have gone to Cleveland Clinic and been in the same program I'm in assuming their income qualified them. In other states there are Medicaid programs; Ohio doesn't participate although she might have qualified for something. (Sort of like I have Medicaid....as long as I write a check for 87% of my income they'll cover other medical bills that month.) However that is a very, very long trip for them and would have made a difficult situation much more difficult. Also, Geraldine's condition is rare enough that pretty much one surgeon in the state is experienced with it. She needed that surgeon and she may need him again.
It is part of the process of dealing with having a baby who needs major surgery when her life is measured in days, not months. The shock hits over time and in the case of this diagnosis there will be ongoing testing quite frequently for a while and then tapering off over the next several years. There is a 20% recurrence rate and some percentage of those recurrences will be malignant. The goal is to catch any recurrence and remove it immediately. All that a recurrence requires is one cell to have been missed during surgery. This part, the part where she has a congenital condition and not "just" a tumor, that takes a while to hit because while she was waiting for and the recovering from surgery those things didn't matter. What hit my sister today is another variation on that: how could we manage all this expensive and necessary care without insurance?
This is a very divisive issue right now and I don't mean to offend anyone as I'm positive some of you won't agree with me. But I am going to post this because somehow this insurance thing has become less of a narrative and more like 2 sides of a very tall wall.I babysat my nieces today and happened to be there when the insurance statement for Geraldine's surgery arrived. My brother-in-law told my sister and I the total and that they didn't have to pay any of it because they'd met their deductible/out-of-pocket, probably with my sister's surgery 3 weeks before Geraldine's. My sister was horrified at the cost and then burst into tears. "What," she said, "would we have done without insurance?".