February 26th, 2011

woods, Elizabeth, camera, April

Cost-Benefit Analyses Then and Now

Richard Rettig has a Perspective article in the February 17 New England Journal of Medicine titled "Special Treatment--The Story of Medicare's ESRD Entitlement."  If that initials don't mean squat to you, that's "End Stage Renal Disease"...and the special entitlement is what opened up access to kidney dialysis for not only current (then current) Medicare beneficiaries but to anyone with that diagnosis.  It was, in fact, a strong step in the direction of the socialized medicine and many people have probably gotten dialysis through that program without realizing it.

The article gives a history, however, preceding the legislation and it's there that my history and the article ran into each other and created the rip tide of emotion that's kept me upset all day and into the night.  It gets to the heart of what was wrong with medical/social/political views in the '50s and '60s, and what's wrong with them today.

In 1958, when I was 13, my mother was diagnosed with end-stage renal disease and told she would be dead in six months.  She had very little kidney function left.  She did not, in fact, die in six months (the good news) but she was never well again.  She had many crises, a lot of pain (renal colic is no fun), and--the point at which my teeth start gnashing--as a divorced woman, she was at the very bottom of the priority list for dialysis, even if it had been available in our area (the nearest dialysis unit was 150 miles away) and covered by insurance (it wasn't, and she was already considered uninsurable.)  

The value of women in the medical marketplace was then, as now, low. White male "family men" were a top priority: the patient chosen to be a show-case for Congress and receive dialysis right in front of the House Ways and Means Committee was chosen because, in the words of the NEJM article, "the patient was a family man, in his prime working years, who could be rehabilitated and returned to gainful employment..."  In other words, he was worth more than a white married man without children, who was worth more than a white single man, who was worth more than a white married woman with children, who was worth more than a white widow with children, and so on down the list...and at the bottom were "unmarried and divorced women, with or without children" (with unmarried women of color no doubt lower than unmarried white women, but at that level nobody was getting treatment, so the effect was the same for all.)   The priorities chosen by the "anonymous" committees who decided who had access to dialysis were supposedly related to the net benefit to society  of keeping each fortunate  individual alive; they were not quite uniform across the country (in some areas religion as well as gender, marital status, and children was a factor)  and because of anonymity and the fact that criteria were only leaked, not openly discussed, there's still a lot of murk concealing the topic.   However, the basics: white "family men" at the top, and divorced and single women at the bottom, was pretty constant.

Though fewer women worked outside the home in the 1950s than during WWII, many women still did.  Virtually all elementary school, most middle school, and most high school teachers were women.  Nurses were nearly all women.  Secretaries were women.  File clerks were women.  Sales clerks in the stores where I lived were almost all women (except in the shoe store and in the hardware store.  The shoe store had no women clerks when I was a child; the hardware store had one--my mother--until she changed jobs when I was nine.)   There were many women bookkeepers (though few women certified CPAs.) And there were plenty of women who, widowed or divorced, were heads of their households and raising children.

But women in the workforce didn't matter as much.  They weren't as valuable to the community as "a family man, in his prime working years"  My mother was not perceived as valuable...she was merely a family
woman and being in her "prime working years" (which she was) didn't mean a thing.  Of course, women weren't paid as much as men (the income gap is still there, though less) so if you see the value of a person purely in terms of their salary...then of course women were less valuable.   Moreover, she was a divorcee raising a girl  (a completely different category from a widow raising a son, in terms of moral worth.)  Divorcees got a clear message that they should just hang their heads in shame and creep around accepting whatever abuse was heaped on them.

I cannot begin to express what it was like, as a teenage girl, to live in fear that my single parent--my sole source of support--was going to die and leave me to the mercy of those I did not trust.   I cannot begin to express what it was like, as a teenage girl, to find out what the priority list was for that dialysis unit in Corpus Christi, 150 miles away--to know that my mother was automatically at the bottom of the list.   To find out that the same priorities held for kidney transplants.  Children in two-parent families, if one parent was sick or died, had another parent who might pick up the slack, find a job, support them.  Not children in one-parent families.  Not me.  And I knew already--had known since first grade--that society considered me next to worthless (child of divorce, child of a broken home) and that girls and women were always--even if from impeccable two-parent families with good incomes--of less account than boys and men.

I had a sick feeling in my stomach for years.  Through the rest of junior high.  All through high school.  Through a couple of years of college, at least.  Would she die tonight?  This week or next?  Before the next birthday?  The tension never let up.

In 1972,  the Medicare program was extended to provide treatment for ESRD for all, using a combination of age (it was already serving those over 65) and disability (defining those with ESRD as disabled.)   For the first time, women as well as men, persons of color as well as white,  poor as well as rich, married, unmarried, with and without children, all had access to the life-saving treatments for renal failure.   By the time the legislation was finally passed to fund dialysis for all with end-stage renal disease, in my mother had survived far longer than expected, on a very restricted diet, and with frequent crises.  I was out of college and the military by then, and married.  My mother still met the criteria for end stage renal disease, of course.   Shriveled-up kidneys don't grow back.  She had, by the way, continued to work full time--though missing some days of work, she worked overtime to make them up as much as she could--through those "prime working years."  In fact, she worked full time until she was 65 (and worked in a volunteer capacity beyond that.)  She opted not to go on dialysis, since her condition was manageable, she thought, the way she'd done it.  It would give someone else a chance, she said. 

Although I was never as forgiving of the system as my mother, I had pretty much gotten over it all, I thought, until this article reminded me of the roots of my feelings about medical care, women, socialized medicine, the prioritizing of people and programs, etc.

I'm not over it, as my reaction to this article proves.   Moreover, I see the same forces at work now, devaluing women in relation to men,  in medicine as well as other areas of politics.    The removal of funding for WIC (Women-Infant-Children food supplementation programs), Medicaid, disability services....all these bear more heavily on women (and their children, if they have them) than men, in large part because women are still struggling to achieve educational and employment parity.   The direct attacks on women's autonomy--especially in the area of reproduction, but elsewhere as well, with women still treated as the cause of problems whose outcomes they suffer--are reversing what progress was made in the '60s and '70s.  
Prominent and powerful politicians--the governor of Georgia, the Speaker of the House--clearly think women cannot be allowed "life, liberty, and the pursuit of happiness" in any way they don't think suits their needs.

The NEJM article states that "the ESRD entitlement was added to Medicare because the moral cost of failing to provide lifesaving care was deemed to be greater than the financial cost of doing so."   And in the long run, the people under 65 who got dialysis under Medicare were mostly able to go back to work, to care for their families, certainly to do more than they could otherwise.  They made money; they spent money that boosted the economy; they paid taxes and that increased the national income.   So there were two benefits--one moral and one financial--easy to measure.  The benefit to the children who still had a parent--maybe even two parents--is harder to measure...but I can tell you it was significant.  

What we have now is too many politicians who will happily tell you they are in "public service"--while not serving the public at all, but their own ambitions and the corporations who fund them.   They would not grasp the concept of a "moral cost of failing to provide lifesaving care"....and that shows how far we've gone in the wrong direction.