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Honoring RBG

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Today on Facebook I’d like to publish a fundraiser to honor the memory of Ruth Bader Ginsburg. There are many charities that you can choose to do this, but I’m suggesting that this one has special meaning in several aspects of RBG’s life: The National Tay-Sachs and Allied Disease Foundation (NTSAD).

Tay-Sachs disease is a 100% fatal disease that is concentrated in two populations, Jews of Eastern European ancestry like RBG, and the Cajuns of Canada and Louisiana. TS does occur more generally, but those two groups see it the most often.

Tay-Sachs disease is a nightmare. Because it is rare, physicians do not generally test pregnant women for it, and even in the main populations where it is more common, it is often not detected until late in a pregnancy. If a child is born with it, that child is doomed to a maximum of 4 years of life. Every day of that life will be filled with pain. The child will often scream in agony for hours on end, and the signs of their discomfort never stop. There is no possibility of anything resembling a normal childhood, or a normal life for the family.

Tay-Sachs disease also has terrible social consequences. Parents who cannot afford round-the-clock nursing care have to do it themselves. Over half the parents with a Tay-Sachs child wind up in divorce proceedings. You might be able to imagine what this might mean for the other children of those marriages.

I have a personal connection to Tay-Sachs: I am a carrier of the gene. The disease occurs when both parents are carriers and a child is born with a double dose of the gene. If one parent has the gene, they can pass the gene to a child, but the child then becomes a carrier rather than a victim. Even if both parents have the gene, there is just a 25% chance that a child will actually develop it. My grandmother lost the lottery. She bore 6 children in the WW1 era Europe, and 3 of them died before age 2. When I asked my father and one surviving aunt what killed them, all they would say is that they died of a horrible disease. Although it is not possible to say with certainty that this was Tay-Sachs because this preceded genetic testing, given that we are carriers and the family had decent economic status (so there was no malnutrition at that point), TS is a reasonable surmise.

There is another connection to Ruth Bader Ginsberg here. Tay-Sachs disease is one of the conditions that makes it imperative to preserve Roe v. Wade. Parents should have a choice about whether to bring a Tay-Sachs baby into the world. As I watch various states pass anti-choice bills, I look at their provisions to see what would happen if parents discover they have a Tay-Sachs fetus in the 3rd trimester. As of yet, I haven’t seen a single one of these bills that would allow a termination under these circumstances. Some of those bills allow for termination for rape or incest, but not a one to spare parents from a child’s agony, family bankruptcy and divorce.

And please understand that while Cajuns and Ashkenazi Jews suffer disproportionately from this scourge, it (and similar genetic disorders) can and does hit everyone.

[This article was posted as a Facebook fundraiser.]

Please consider a donation to this wonderful organization today. When Facebook tells me that the donation period has concluded, I’ll try to make sure the Foundation knows that it was in honor of Ruth Bader Ginsberg. And Terri and I will start the ball rolling with a $75 contribution.

Happy Birthday, Mary Love

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One of the most important people in my life was born this date, August 6, 1915, so this is 104th anniversary of her birth. Mary was my father’s first wife, he married my mother after he divorced Mary. They remained on a friendly basis and we made the occasional pilgrimage from our home in the Bronx to Mary’s apartment on 112th Street between Broadway and Amsterdam, not far from Columbia University. Mary was Mary_Loveimportant to me among many reasons because her apartment was a place of tranquility in the tempest of my life.

My father was impatient and my mother was mentally ill–not a good combination. Arguments were frequent and loud in my own living space, and I longed to be someplace else. When I was about 7 years old, I walked across the hall to the apartment where my cousin Marty lived and begged him to tell me how to get to Mary’s apartment. Marty was about 5 years older than I was and wise to the ways of the New York City Transit Authority. He gave me directions.

One weekend day soon after, during a robust disagreement between my parents, I walked the two blocks to Southern Boulevard and then another 4 blocks to the IRT 174th Street Station. I didn’t need to pay a fare, because in those days the rule was that anyone who could walk under the turnstile could ride free. And for better or for worse, I’ve always been short for my age. I boarded the Southbound IRT train and watched for the Grand Central, 42nd Street stop according to Marty’s directions. From there, I took the Shuttle Train one stop to Times Square. Being careful to look for the Uptown side, I made sure to take the Number 1 Broadway Local. I disembarked at 110th Street and headed up to street level.

From 110th St., I stayed on Broadway and walked two blocks north to 112th Street. I recognized the street well. The church of Saint John the Divine filled the end of the street. I walked past Tom’s Restaurant (the facade used for the Seinfeld show), the Goddard Space Institute, and the next building was Mary’s. The front door was locked, but someone opened the door for me, and I walked up the stairs to the second, Mary’s floor. I quickly found Apt 2G and rang the door bell. I could hear some rustling around behind the door, and soon Mary was peering through the peephole, but she couldn’t see me–I told you I was short. I knocked, and she said, “Who’s there?” “It’s Jackie, I replied.” “Jackie?!!!”

The door opened and she was completely astonished. The first thing she did after inviting me in was call my parents. She made me a grilled cheese sandwich and something to drink and chatted the hour or so it took before my father arrived to fetch me. He would have been apoplectic were it not for the fact that both he and my mother were just relieved that I had been found safe and unharmed after the few hours I had been gone. We returned home by taxi.

That trip lasted only a few hours, but it was the first of too many to count. After that, I returned to Mary’s house almost every weekend, often sleeping over.  In Mary’s house I found good literature. We went to the movies together, Broadway shows, off-Broadway shows, and off-off-Broadway shows. We went to every museum that Mary could find, and Manhattan had a lot of them. We ate all over the Village, Midtown and the Columbia district. If I am somewhat normal today, I owe all that to my life with Mary Love. I miss her every day, but this day I celebrate the day she was born.

Health Care in Post Revolutionary America

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We’re coming up on the first anniversary of my encounter with the American system of health care, so I think it’s worth doing a little recap and asking a few questions. I’ll keep this as short as I can, but health care is a complicated topic, so I hope you can spare a few minutes to read it in full.

Back in 2010 I retired from the University of Michigan a few years earlier than most people can consider such a thing. The largest obstacle many of you will face in taking early retirement if you are US citizens living in the US is the question of how you are going to obtain health care. And let me explain that I didn’t take early retirement so that I could play golf or sit on my butt, my object was (and is) to see if i can do something with my life more in line with what I set out to do after college. For my first year out I spent time trying to help folks living with a mental illness and now I am engaged in teaching Biblical languages and literature at the University level. With a little help from the Almighty and my friends I might see the day when I complete the Ph.D. I started to write in 1979.

Back to health care. Shortly after I agreed to the terms of the early retirement, the University of Michigan informed me that I could continue to receive their health care plan, but the cost would be $1,400 per month. As generous as the retirement offer was, there would have been no way that I could have afforded to pay that out of pocket. The reason I could consider taking the University of Michigan up on an offer to retire early was that I have a supportive spouse who agreed to carry me on her health plan. And so, with health care presumably under control, I took the offer.

A year after I retired, my wife received an attractive offer from the University of Tennessee Knoxville (UTK). Since I was retired, it was easy to give the offer serious consideration and we ultimately decided to take it. I arrived in Knoxville slightly before Terri just after Thanksgiving 2011. And just after I arrived, I suffered a pretty severe injury to my left knee brought on by all the moving activity. I wound up in the ER of UT where they spent some time making sure that I wasn’t going to bleed to death or need an amputation, and then they sent me home with a referral and advice to follow up with x-rays, etc. That’s when the “fun” began.

At that time (late November 2011) I was fully covered by the health plan of the University of Michigan. Beginning on January 1, 2012 I was fully covered under the health care plan of the University of Tennessee. At no time, not one day, was I lacking health care insurance. Nevertheless, I found myself effectively deprived of health care for about six weeks. This is how that happened.

As soon as I returned from the ER, I did what I was supposed to do under the terms of my Michigan insurance. I called the plan to inform them of the injury and to request that they authorize the recommended care. They cheerfully informed me that less the deductible, my ER visit was fully covered. They also said I was welcome to obtain all the follow-up care recommended by the ER with my “primary physician.” I pointed out that I was living in Knoxville and the primary physician was in Dexter, Michigan. They recommended that I fly or take the bus so I could receive my health care. When I pointed out that the health care was supposed to be covered when I was living outside Michigan, they replied, yes, that’s true, but you have to prove that you have lived outside the state for three years before that kicks in.

I wasn’t going to leave my spouse to deal with all the moving issues as she settled into her new position in Knoxville, so I just “toughed it out” reasoning that I would soon be covered by health care via the University of Tennessee. On January 2, now legally covered by UTK, I called a physician who had been recommended to me here in Knoxville. His appointments secretary looked me up “in the system” and informed me that since I wasn’t listed (yet) she could not offer me an appointment. I was flabbergasted. Really? She went on to explain that the UTK policy was that claims have to be filed within two weeks of the appointment or they would be automatically denied. It can take two or three weeks for the coverage to show up, and so in the past they have lost the ability to collect their fee for service because of this policy. As a result, they adopted their own policy which is not to see anyone who doesn’t appear on the claims list.

I did not have to wait the month or so this would have meant. I had made a physician friend in the community and he called to ask me how things were going. When I explained all this to him, he called the physician directly and the following day, the appointments secretary was back on the phone to me offering me an appointment. Altogether, I was unable to see a follow-up physician after my accident for six weeks.

This is how it was for a person with some of the best health care insurance in America. And all of the barriers to care that I experienced can be chalked up to insurance companies. Had I lived in Canada, England, New Zealand or tiny Israel I would have received prompt, good attention to my medical needs without fuss or muss. But in America, with our vaunted health care as available to those lucky enough to have insurance, I was treated like a pauper begging for care. Actually worse, because a pauper might have been eligible for indigent care.

The political silly season is now upon us. I am unconvinced that the problems I have experienced will be ameliorated by Obamacare because I don’t think Obamacare does much to reign in insurance abuse. What I would like to know is what precisely Romney/Ryan will do to improve this situation. I understand they oppose Obamacare (as I do). But that’s not good enough. While I dislike Obamacare, I think it is better than the nothing we had before Obamacare. Getting rid of Obamacare only puts us back to an even worse situation. What is the solution to this insanity we have in our country? Under what clause of what Romney/Ryan plan would I have been able to receive medical attention in less than the six weeks it took?