C. ONE GROUP AT A TIME – THE WONDERS WE CREATED AND THE POTHOLES WE DUG

“It always seems impossible until it’s done.” – Nelson Mandela

Over the course of many decades one American group, then another, was given the RIGHT to receive state of the art, health care.

The right to health care

Medical care was not one of the rights mentioned in the Declaration of Independence, and the ones that were said to be “God given and self evident” were little more than a philosophic utterances or commandments carved on a stone tablet. They wouldn’t become “real” until they were granted and funded by government. The right to liberty didn’t exist for black people who were held as slaves before 1865 when the 13^th amendment became law. Women didn’t have the “right” to vote until 1920, when enough states ratified the 19^th amendment. The right to bear arms was established in 1791, but was never funded. Guns aren’t free. They aren’t supplied by the government. We have to buy them.

In the late 1700s few thought health care should be a right, in part because most of the treatments used by the doctors of the day were pretty awful. Like—the December morning in 1799 when 67 year old George Washington awoke desperately ill. He was retired, living at Mt. Vernon. (As related by his secretary Tobias Lear¹) The previous day Washington felt well and went out in the snow to “mark trees that were to be cut down.” Upon awakening the day in question he couldn’t talk and had trouble breathing. His wife sent for one doctor, then another. George and his wife Martha were two of the country’s richest people; they didn’t need subsidized care.

During the day three prominent physicians came to the home and plied their trade. The doctors were among the country’s best and they worked hard. On 4 occasions they bled the sick man and removed a lot of blood. His throat was swabbed, he gargled, his feet were covered with wheat bran, and he was given an emetic to induce vomiting. Nothing worked and Washington’s breathing got worse, so he dressed, thanked his 3 doctors, and made arrangements for his burial. That night he died.

In 1781 we didn’t know bacteria and viruses caused infections. Doctors (and barbers) were skilled at cutting off wounded or infected limbs. Surgery was risky. Antibiotics didn’t exist. There were no blood banks. And most doctors hadn’t developed the skills or knowledge needed to remove damaged organs safely.

In 1914, when the First World War started, physicians had a better understanding of illnesses and their cause, but they still were unable to do anything to prevent or treat them. My dad was six at the time. The family lived in a small, wooden, dirt floor, cottage in a Shtetl that straddled one of the main Ukrainian east- west highways. That year acting on orders from the Czar, the Russian army attacked Germany, entered their enemy’s territory, and fell into a trap. The second army was virtually` destroyed at the Battle off Tannenberg. Thousands of the surviving soldiers retreated. When they came through my father’s town the fleeing Cossacks burned the family home to the ground. During the subsequent years the family crowded into one of the remaining cabins on the edge of the village. It was owned by an elderly Ukrainian who hadn’t left for mother Russia with his family.

During the war years no one bathed; everyone’s garments and bedding contained body lice. One winter there was a typhus outbreak. The infectious disease is caused by a tiny bacterium (ricketsia) that lives in the lice. When people scratch and tear their skin the bacteria enters their bodies causing a severe illness: chills, high fevers, lethargy, rash, and a cough. Some people become delirious or lapse into a stupor. “During the eight-year period from 1917 to 1925, over 25 million people living in Russia developed epidemic typhus; three million died. Some claim epidemic typhus has caused more deaths than all the wars in history.³”

Antibiotics had not yet been discovered, so doctors could diagnose the disease but they had no treatment. When the town’s typhus outbreak became rampant a horse drawn wagon came around. People with high fevers and confusion were loaded onto these carts and taken to a large hall full of beds where most of them died. (In the 21^st century Typhus is easily cured and prevented with the antibiotic Doxycycline.)

My father always remembered his boyhood, and when I chose to go to medical school he shrugged. Based on what he witnessed, he had concluded that doctors knew how to recognize and diagnose illness, but that’s all they could do.

Back then, as now, most people who get sick recover. Smallpox once killed 30 % of those infected, but 70 percent mounted a defense and lived. After a person donates a kidney or half a liver (to be transplanted in another body), the donor usually recovers completely and lives a normal life. When a wounded or infected body is given the right boost, it will usually do the majority of the heavy lifting.

During the last century and a half the right to receive state of the art care was periodically granted to one group, then another, and black men and women were gradually and reluctantly allowed to participate.

After the American Civil War ended the government faced a humanitarian crisis. Four million former slaves were abruptly told you’re free to leave, but they had no resources and nowhere to go to– no basic shelter. Often cramped together in abandoned buildings, they couldn’t maintain basic hygiene, and many got sick. Privately run institutions for the very poor existed, but there were no hospitals, and the private shelters wouldn’t accept the newly emancipated. Former slaves died in large numbers. In some places “their bodies were littering the streets.” About that time there were 54,000 male and 300 female medical doctors in the U.S. and only a few were people of color.^41,42

Congress established the Freedman’s Bureau in the South.” It “fed millions of former slaves and poor whites, built hospitals, and provided medical aid. But its hospitals didn’t have enough beds, linens, quarantine facilities. There were merely 120 doctors for the entire population. And there was a smallpox outbreak. In July of 1872, “responding to the continued hostility of white Southerners, Congress terminated the Freedman’s bureau.”

In the early post Civil war years the government founded a number of black schools and colleges. In 1868, one of them, Howard University in Washington D.C., “became the first school to have a medical program for blacks.”².

The country’s first black surgeon, James McCune Smith, had to go to England to get his medical degree. He grew up in New York and had a black mother who had been a slave and a white father. Educated in the city’s African Free School, he was denied entrance to an American University and went to college in Glasgow. In 1937 he graduated from a London medical school, returned to the U.S. and became a vocal abolitionist. He wrote the introduction to the Frederick Douglass book “My bondage and my freedom,” and was practicing medicine in Brooklyn when the Civil War ended.⁴⁰

Rebecca Lee Crumpler became the country’s first black “doctress” of medicine in 1864. Born a “free” black in Delaware in 1831, she later wrote about her journey in the Book of Medical Discourses. It was published in 1883. “Having been reared by a kind aunt in Pennsylvania, whose usefulness with the sick was continually sought, I early conceived a liking for, and sought every opportunity to relieve the sufferings of others.” Between 1852 and 1860 Crumpler “served as a nurse under several doctors. In 1860 she “was admitted to the New England Female Medical College, the first institution in the U.S. to train women in medicine.” It merged with Boston University in 1873.⁴⁰ Students were “taught by rote–four lectures each day, often clocking in at eight hours total. A systematic course of study with nominal variation from college to college didn’t exist, and there were no “medical licenses” or exiting exams.” ⁴¹

Educated in the days before Pasteur and Koch discovered that bacteria—germs– cause infections, Crumpler explained that infectious diarrhea—she called it cholera infantum– was caused by “poor milk, bad air arising from old water-soaked cellars, or some atmospheric phenomena.”

When I entered Washington U medical school in 1958, my class consisted of 75 white men, 8 women and the school’s first black student. His name was James Sweatt and for decades he “had the impression that it was routine for all the professors of the departments in the medical school to sit around and quiz applicants for admission. At the 25th or 50th class reunion he found out that everyone else who was interviewed for medical school had been seen by one person and that was that.” I was introduced to Jim’s world one evening when, after an evening of study at the library, he was one of the group of med students who went to a local diner for a late night snack. After a series of waitresses bypassed our table we asked the guy in charge why no one had taken our order. “You look like smart guys” he said. “What do you think?” Dr. Sweatt grew up in Dallas, a town where, in the 1950s“Whites Only” signs peppered the landscape. Blacks were allowed to buy clothes in the town’s department stores, but they weren’t allowed to try them on.” His mother was an 8^th grade teacher, his father a high school principle and he was educated in white schools and at a university where he was one of each institution’s 2- 3 black students. After Jim graduated from Medical School in 1962 he became a thoracic surgeon and practiced in Dallas. In 1995, he became the first African-American president of the Dallas County Medical Society. After he graduated our school, Washington U., didn’t admit another black medical student for 10 years. ³⁹

St. Louis City hospital was integrated by the mayor in 1955, the year after the Brown v. Board of Education decision. At the time black physicians, by and large, couldn’t get privileges to practice at hospitals dominated by whites. Ninety six percent of the patient’s in New York’s for-profit hospitals were white and 97% of the people in the city’s private and semi-private not-for-profit hospitals were caucasian.²⁶” Throughout the American South and in many of the border states black physicians were denied membership in the local medical association, and non members could not get hospital admitting privileges.³⁷

As late as 1968, the AMA condemned racial discrimination but allowed its member medical societies to discriminate. The AMA didn’t adopt a policy that banned racial discrimination in membership of national and state medical societies until 1968.”

Seemingly politically influential, the AMA is a national conglomeration of physician groups. It opposed national health insurance, currently disapproves of the single payer option, and for years ran cigarette advertisements that touted the health benefits of filtered cigarettes in the JAMA, their journal. They didn’t consider smoking a health risk until 1963, the year before the U.S. surgeon general, on the basis of more than 7,000 medical articles that were available and doctors should have read“ concluded”: Cigarettes cause lung cancer, laryngeal cancer, and chronic bronchitis³⁰.

Physicians who were not members of the AMA could not get admitting privileges to most U.S. hospitals. Many primary care doctors had separate waiting rooms. Black patients were seen after the white patients were seen. Some of the ill went to county hospitals—where they often sat for hours on wooden benches waiting to be called. Black people were bedded in the basement wards of white hospitals or cared for in black hospitals, which were few and far between. St. Louis uniquely had a large hospital that served the black community. Founded in 1937 after a political struggle, Homer G Phillips hospital had 600 patient beds, was the primary source of health care for the area’s indigent blacks, and was a major training center for African American doctors. It closed in 1979²⁷.

That all started to change in 1965. That year Congress passed and President Johnson signed a law that established a new “right” –and created two new programs: Medicare and Medicaid. The entities were funded by a payroll tax; an additional 2.9% of a person’s earnings were taken from each paycheck.

Medicare– paid for the hospital care and some home services for citizens over 65.
Medicaid covered the care of citizens who were “poor enough”–whose “resources were insufficient to pay for health care.²⁹”
Medicaid also covers nursing home costs for people who meet the eligibility requirements.
50 to 75% of Medicaid’s costs were paid by the feds and each state paid the rest. States with higher per capita income paid more.
Every state got to limit the amount a family could earn before they no longer qualified, and criteria for inclusion in the “program” have changed over time, so there are variations in Medicaid coverage across the country.¹
Additionally—Medicare later established a hospice benefit. Dying people now had help and many could and preferred to manage their pain and problems in their own homes.
As part of The Emergency Medical Treatment and Labor law, hospitals had to provide pregnant women “appropriate medical screenings and stabilizing treatments.
Medicaid coverage for pregnant women and infants (up to 1 year of age) was established as a state option for people who earned up to 100% of the Federal Poverty Level (FPL).
“In 1964, a year before it enacted Medicare, Congress passed the Civil Rights Act. One of its provisions, Title VI, prohibited discrimination on the bases of race, color, or national origin in programs that received federal funding.

The following year when Medicare was being debated there was no mention of Title VI. It didn’t come up and nobody wanted to raise it. “The assumption was that some accommodation would be made that would allow segregation to continue on a separate but equal basis.” The nation’s response to the 1954 Brown v. Board of Education Supreme Court decision had shown that when it comes to race, changes don’t happen very much or very fast. The ruling ordered states to put a stop to segregation in schools with “all deliberate speed.” But “The vagueness about how to enforce the ruling gave segregationists an opportunity to organize resistance.”

In 1956, two years after the Supreme Court decision, the University of Alabama enrolled the first black student, Autherine Lucy. Then “riots engulfed the campus and she was expelled for “her own safety”. In 1962 demonstrations greeted James Meredith, the first black student to attend the University of Mississippi. My medical school, Washington U. in St. Louis, didn’t graduate its first black physician until 1962. Berkeley California became the first sizable city with a “substantial portion of black students” to voluntarily begin two way bussing. Some white children were transported to schools in black neighborhoods and some black students were bused to schools that were largely white. The program started 12 years after the Supreme Court ruling.

“The Medicare law might carry the threat that federal funding could be withheld from any hospital that practiced racial discrimination. That’s what Title VI of the Civil Rights Act “required.” But the Office of Equal Health Opportunity was in charge of federal funding based on the presence or absence of discrimination and it only had five employees. Swift action seemed unlikely. “Hospitals might have to come up with a plan, but they could presumably proceed gradually and cautiously. Ultimately racial changes wouldn’t get done; hospitals would operate on a business as usual basis.”

Then HEW Secretary John Gardner, put out a quiet call for volunteers. More than 1,000 people from federal agencies offered to help, along with tens of thousands of Civil Rights organizers. Field inspectors fanned out to hospitals to make sure they were in compliance with the law and eligible for federal funds. As David Barton Smith explained in his book, “They wouldn’t let anybody off the hook,” “The reason they were so successful is that they had this secret army of local civil rights workers and local health workers making sure [the hospitals] complied. Hospitals quickly figured out that they couldn’t fake it.”²

As previously noted, the hospital I worked and trained in was integrated. But after the Medicare/Medicaid law was passed a lot of our clientele chose to go to more upscale hospitals in the community. The following summer the wards were sparsely occupied. St. Louis City Hospital continued to exist until 1985; then it closed. Large and important City and county hospitals elsewhere in the country remain very much alive and well.

Medicare initially reimbursed hospitals based on the number of days a person spent in the hospital. After 1983 they linked the amount they paid to the patient’s diagnosis. The new approach made sense because doctors, at times, appeared to be keeping people recovering from surgery or an illness an extra day or two when it wasn’t clearly “medically necessary”. Some of the delays were a matter of caution: a physician wanted “to be sure the person was OK” before they sent them home. Others seemed to be for the convenience of the physician. It takes a long time to discharge a person and arrange for their post hospital care. At times the hold-up was caused by the patient. People work. It’s hard to get a ride home at an inconvenient hour. An extra day in a hospital commonly costs a few thousand dollars. Hospital acquired infections are not unusual, people lying in bed for a time can develop pressure sores, and the weakened or neurologically impaired risk a fall when they get out of bed without assistance. The practice of “reimbursement based on a predetermined, fixed amount” is also probably responsible for some unstable sick people being discharged “quicker and sicker.⁴”

On October 30, 1972 The U.S. government chose a very expensive pre-existing condition (advanced renal –kidney failure) and made its care a “right.”

Kidney failure wasn’t part of the bill the Senate debated during a rare Saturday morning session on September 30, 1972. Nor was it part of the legislation passed earlier by the House of Representatives. The amendment that added dialysis to the Medicare bill was introduced late that Saturday morning. There was 30 minutes of debate before it was accepted by a 52 to 3 vote. Weeks later a House, Senate Committee discussed the kidney amendment for 10 minutes, and left it in the bill. Nixon, who was a pro health care president, signed the legislation with a flourish a week before he was re elected.

Bodies have two kidneys. They are located near the back of the upper abdomen on both sides of the spine. They strain the blood and produce urine, fluid that is unneeded and unwanted. The urine, in turn, is “flavored” by a number of soluble additives: debris, break down wastes, and proteins that in high concentrations are toxic. After the blood is filtered the liquid pulp is returned to the body. A number of conditions and diseases can cause the kidneys to malfunction or fail.

When I started medical school people with chronic renal failure died.

“In 1960, a group led by Dr. Belding Scribner, a man who called himself Scrib, connected the artery and vein in a person’s forearm with a Teflon catheter. It allowed doctors to repeatedly draw blood from a body, cleanse it, and return it. Located on the skin surface, and subject to infection, and displacement, the device needed a lot of care. But it allowed physicians to start and keep people on intermittent hemodialysis.” The man who created the pivotal gadget was able to see thanks to transplants of his cornea, the outer lens of his eye. Over time they “became very scarred,” but he didn’t need to drive to work. He lived on a houseboat on a lake near the Seattle hospital where he practiced, and he rowed a canoe to work each day.³⁸

In 1963 “the Veterans Administration (VA) decided to “establish approximately 30 dialysis treatment units in VA hospitals across the country.” In 1964 learning that “immunosuppressive drugs prevented the rejection of transplanted kidneys, the NIH established a program in transplant immunology.”

Over the subsequent 8 years “Programs sprang up across the country,” By 1972 10,000 Americans with renal failure were being dialyzed. Funding was a problem and some people were left out.³

Dialysis became a big business and a significant part of the Medicare budget. 4000+ free-standing centers were established in hundreds of cities by corporations, not hospitals. Their number in the U.S. has increased 4% a year. More than half are owned by Denver-based DaVita, a Fortune 500 company. The other big player, Fresenius is a subsidiary of a German company that operates centers in 28 countries and also sells the machines and other supplies.

Dialysis accounts for 6% of Medicare money. In the first quarter of 2008 DaVita’s revenues were $1.45 billion, up more than 8% from the first quarter of 2008. Fresenius’ revenues from dialysis in North America were $1.57 billion.

The external shunt is no longer used. Before hemodialysis is initiated an artery and a vein are sewed together to create a large blood vessel –a shunt–under the skin. Then three times a week patients with end stage renal disease come to a center and sit in a lounge chair for a few hours. A needle is inserted into the artery-vein, and blood is drawn into a machine. It flows past the “cleansing” membrane. The toxin level in the blood is lowered, the excess fluid is removed, and the blood is returned to the body via the same shunt.

Some people opt for peritoneal dialysis, using the lining wall of the abdomen, the peritoneum, as the filter. Initially a physician places a permanent catheter deep in the cavity. Then, usually nightly in the person’s home, a patient pours a sterile solution (dialysate) into the peritoneal cavity. The membrane’s pores allow waste products like urea and creatinine to seep into the fluid. The liquid is left alone for a few hours, then it is drained. Some studies suggest that people who use this approach do better the first year, and they are more independent. A year of hemodialysis can cost up to $88,000, while a year of peritoneal dialysis costs about $53,000, according to information from the U.S. Renal Data System.

People with very diseased kidneys are usually anemic. To stimulate the production of red cells people on dialysis are also commonly given injections of erythropoietin, a costly hormone, normally produced by healthy kidneys.

A fourth of the people who were being dialyzed died annually, and 80% who started live for less than 5 years. That’s largely because more people starting dialysis were over 50. The mortality rate in the older and sicker people was higher than it was in younger patients or individuals who had hereditary polycystic kidneys. In 1972 high blood pressure was the leading cause of end stage renal disease. Today obesity and diabetes are keeping the dialysis machines whirring. The annual death rate of Americans on dialysis (20.1 % in the U.S. in 2006) is higher than it is in France, 8%, or Japan, 7%. Americans who started dialysis after they were confined to a nursing home did poorly. The first year 58% died and 29% were less functional.⁶ Nearly 20 percent of dialysis patients stop dialysis prior to death.⁹

That’s what happened to the famous humorist Art Buchwald. In his later years he had diabetes and high blood pressure; when he was 74 he had a significant stroke. 6 years later a leg was amputated. I don’t know when or if he started dialyzing his blood, but in 2006, when he was 80 he decided to stop and apparently described his decision as his last hurrah. Contemplating death he wrote “the question isn’t where you are going, it’s what you are doing here in the first place.” Known in the hospice as the man who wouldn’t die, he once quipped: “to land a big obituary in the New York Times you have to “make sure no head of state or Nobel Prize winner dies on the same day” and “Whether it’s the best of times or the worst of time it’s the only time we’ve got. The best things in life aren’t things.” A year after he stopped dialysis his heart stopped beating. The cause of death was kidney failure.

Medicare also pays for kidney transplantation. The procedure wasn’t very good until we had adequate immunosuppressive drugs, but by 1974 over 3000 kidneys were being transplanted annually in the U.S. The number tripled by 1986 and in 2016 reached 13,431.

5600 of the kidneys came from live donors. We were visiting an acquaintance who was in the hospital recovering from a transplant. “So” she said, “things kept going wrong with my shunt and my dialysis and it seemed like I was always in the hospital on the phone complaining. One day I was in the midst of a tirade and the friend I was talking to stopped me cold. “Ok, ok” she said. I’ll give you a kidney, and here I am.

Nine of ten transplanted kidneys were alive and working a year after they were implanted, and half lasted at least 10 years. 93,000 people in our country are currently on waiting lists. The wait is longer, and the people are sicker in New York and California than they are in many other parts of the country. For transplant reasons, the nation was divided into 11 geographic regions; some cover large areas. Committees establish recipient transplant criteria—how sick, how old, body mass index, drug addiction, alcoholism, HIV. And “federal mandate prohibits the allocation of solid organs for transplantation based on “accidents of geography.”

The feds pay for most of the charges associated with a kidney transplantation and pay for the drugs that prevent the body from rejecting a kidney for the first three years post transplant. After 36 months patients are expected to pay for their own medications.

Liver, lung, and heart transplantation is also a “right” for those who “already have Medicare due to age or disability.”²⁸

41 years after the Medicare dialysis benefit was initiated the NIH reported that 63.7 percent of people with advanced renal disease were receiving hemodialysis, 6.8 percent were being treated with peritoneal dialysis, and 29.2 percent had a functioning kidney transplant.⁷

6000 undocumented Americans have end stage renal disease. A few came to this country when they were young and never lived anywhere else. They went to school, paid taxes, and worked until they got sick. Unfortunately decades back, sometimes when they were children, they crossed the border illegally.

For context there are 11 million undocumented people in this country of which one in 1833 needs dialysis. More than 400,000 documented Americans are dialyzed on a regular basis.

Federal funds can’t be used to dialyze undocumented individuals. California and Massachusetts pay for the procedure with county taxes or state-allocated Medicaid funds. Texas and most other states only detoxify the blood of people whose serum potassium is so high or whose build up of toxins is so extreme that death is imminent. People have to wait until dialysis has literally become a matter of life and death.

180 of the 6000 undocumented people with end stage kidney disease live semi-near the Texas Baylor Emergency room. Each day many come to the E.R. and wait. Their blood is drawn; EKG’s are obtained, and they are assessed. The hospital has 12 dialysis chairs, and the people who occupy hospital beds are dialyzed first. Then the sickest of the undocumented are served.⁸

In 1997 congress granted the “right” to health and preventative care to kids from very poor families who didn’t qualify for Medicaid. The program goes by the initials CHIP, is individually run by each state, and is funded by the Medicaid – state/federal formula. It took years before most of the kids who are eligible signed up. But the program was popular, and granted coverage in 2009.

The program was partially paid for by raising the federal cigarette tax from 24-cents-a-pack to 67 cents. That rangled some Republicans. Their election campaigns were aided by the cigarette industry. Their policy committee argued “the lost cigarette revenue would cost too much. States and localities would lose $6.5 billion over five years.” Orin Hatch, a Republican who supported the program found their argument “absolutely preposterous. Does that mean that 419,000 Americans must die every year in order to preserve the state tobacco revenues? That’s like saying we should withhold life-saving treatment from senior citizens in order to save Medicare money.”³⁶

In 1976 the U.S. Supreme Court created a right for medical care to people who are incarcerated. Eight of nine justices “acknowledged that the eight and fourteenth amendments required the Texas government to provide medical care for prisoners.¹⁰” The eighth amendment of the U.S. Constitution prohibits governments from imposing cruel and unusual punishments. When the Supreme Court rules that a practice is unconstitutional in one state it’s automatically unconstitutional in all states.

To be meaningful, of course, rights need to lead to action. Each state deals with its inmates a little differently. California, for example, has more than 150,000 prisoners. In 2006, in response to a law suit, a federal judge learned that prison conditions were “disgraceful”, declared the health care the institutions provided was unconstitutional,” and put the California State facilities into receivership.¹¹

San Quentin Prison sits on San Francisco Bay and houses over 5000 inmates. Many have mental health problems. In 2009, as a result of a judge’s order, the facility opened a $136 million, 5 story hospital. The prison employs 10 full time psychiatrists. Pay, according to one internet ad, starts at $19,000 a month plus benefits. According to Eric Monthei the chief psychologist, clinicians try to give care similar to that of their colleagues in the community. But they must deal with the prison environment, something we can’t begin to understand on a gut level. The population contains a disproportionate number of people with personality disorders, depression, and substance abuse issues. Psychiatrists see people for medication management if they have serious symptoms or if they wish to be seen. If there is a psychiatric emergency, if someone who is incarcerated becomes suicidal or homicidal, there is a 7 bed psychiatric ward. In the private world psychiatrists are responsible for hospitalized people and drugs. In prison a psychologist works in the hospital. Some of the prisoners are “Axis one”. They have major mental health disorders like Schizophrenia, bipolar or schizo- affective disease. Some committed crimes under the influence of methamphetamine, alcohol or other drugs. There are non violent offenders who have committed their third felony and are thus in prison for life because of the California three strike law.¹²

According to the psychiatrist I interviewed, when prisoners arrive they are screened by a psychologist and interviewed by a social worker. They are assigned a case worker who is responsible for their medical care (with the exception of medication.) Some people are already on drugs, so called “bus meds”, pharmaceuticals like the anti depressant Prozac, and they will need to see a Psychiatrist for refills. Prisoners who are “triple CMS”, those taking psychiatric drugs who have medical problems, are placed in single cells.

When the MD psychiatrist arrives in the morning he or she is given a “docket”, a list of people he/she must see that day. There can be as few as 4 to 5 and as many as 14; visits commonly run 30 to 45 minutes. Inmates who are not administratively segregated or in protective custody come as a group and wait in a holding area. Others arrive one by one heavily guarded and shackled. The “non dangerous” people are seen in an office. The “dangerous” prisoners are seen while they sit in corrugated metal “cages.” The interface between physician and inmate is like a heavy metal chain link fence. There is a spit mask and the prisoners are tied. The psychiatrist carries a fire arm and a whistle. When the doctor speaks to the patient, the guard is usually outside the door, just out of ear shot.

The psychiatrist I interviewed worked at San Quentin, California’s oldest. Located on 400 acres of prime real estate, it borders San Francisco Bay, and is largely sheltered from the fog and ocean breezes that batter some of the areas multimillion dollar houses. The home of some of the nation’s more significant criminals, it has a death row that houses 737 individuals. In the U.S., a nation of 76 million people, 2.3 million people were confined in March 2020; 450,000 people are locked up for a non violent drug offense each day. Most of the crimes that lead to jail or prison time are non violent. Many who are jailed will soon make bail or can’t afford it and plan to stand trial.

The nation has 1,833 state prisons, 110 federal prisons, 1,772 juvenile correctional facilities, 3,134 local jails, 218 immigration detention facilities, 80 Indian Country jails, and many more. 9% of the prisons are run by private for profit organizations.³⁴

“Incarcerated persons have high rates of communicable and chronic diseases, and though health care is a “right”, “the type and quality of the care depends to some extent on variations in policies, budgets, and staffing across federal, state, and local jurisdictions.”³²

In 1986 by passing the Emergency Medical treatment and Active Labor Act, (EMTALA) congress created an important right for everyone.

That includes –the insured and uninsured.
Citizens, foreigners, and “illegals”.
Anyone who suffers an acute illness or injury;
people who show up in the emergency room and
those who call an ambulance. They all have to be treated.

Hospitals that take Medicare funds, in other word almost every hospital in the country, is required to provide emergency and necessary hospital care for: serious illnesses, injuries-for women in labor—the ill and injured. The care must continue until they are “stable.¹³”

Before the law was passed some hospitals wouldn’t care for you if you couldn’t pay. Sick unstable uninsured people were “dumped”. People were “transferred for financial reasons, from private to public hospitals without consideration of their medical condition or stability.” Some of them died.

After Congress passed the law one of the government agencies, the HCFA, (Health Care Finance Administration) held hearings and created a number of rules and regulations. Their guidelines “have the force of law” and they apply to all of the 98% of U.S hospitals who participate in Medicare. Hospitals are required to medically screen any person who comes to the hospital emergency room and asks to be checked out. If the person has an “emergency” problem the hospital must stabilize the situation if they can. For example: a person with a ruptured appendix must be treated medically and/or surgically before he or she is discharged.

A person with an acute myocardial infarction (if medically appropriate) must be catheterized, stented, and observed before he or she is released.
If the hospital doesn’t have the expertise or equipment to care for a person, they must transfer the patient to an appropriate hospital.
They are in violation of the law if they delay services “in order to inquire about the individual’s method of payment or insurance status”
The sick person doesn’t have to be in the emergency room. They can be in almost “any area of the hospital “campus” including structures and all areas that are not strictly contiguous with the main building but are located within 250 yards of it –or of hospital owned and operated ambulances.

Doctors who are on call are also, often, on the hook. In some states they must show up within 30 minutes of being notified. There are rules, and physicians face fines if they violate them. We’re talking up to $50,000, money that is not covered by malpractice insurance. Transfers are possible with a patient’s consent, if they are “stable.¹⁴ “

A friend of mine awoke one night with chest pain. He was sweating and dizzy, and his daughter called 911. The ambulance arrived quickly. The paramedic determined he was having an acute myocardial infarction. He was rushed to the county hospital where a skilled cardiologist was ready to act. Within minutes a tube was inserted into an artery in his leg and threaded up the aorta. When it reached the heart it entered a coronary artery. Injected dye revealed an important artery was obstructed. The tube was removed and was replaced by a catheter and stent. A balloon on the catheter opened the artery and the stent kept it open. Blood flowed to the oxygen starved portion of the heart muscle, and it looked like the heart had escaped serious injury. My friend lived from paycheck to paycheck, didn’t own a home, and had allowed his insurance to lapse. He was observed for a day, went home, and was sent a bill. .

The Emergency Care Law (EMTALA) gave people having an acute medical problem the right to receive one of the benefits of modern life— but it was not funded. The care is not free.

U.S. hospitals and doctors accept the amount paid by Medicare and Medicaid as payment in full. (That’s the law.)

There’s a website that tells how much insurance companies really pay. Called Healthcare Bluebook, it allows people to punch in their disease and zip code. The program provides a dollar amount. If the website is correct the bill my friend with a heart attack received was outrageous.

The “fair price” for a coronary angioplasty and three days in a hospital in his zip code (per the Bluebook) was $24, 853. (That covers the cost of the catheterization room, the equipment, and the hospital bed.)

The “fair” physician remuneration for stenting a single vessel was $1105. (Add 25% for additional arteries.) And the “fair” anesthesiologist fee for close to three hours of work was $1325.¹⁸

My friend’s bill for his heart stent and two days in the hospital was in excess of $100,000.

What will it cost if you’re appendix bursts or you have a severe asthma attack when you’re in Paris? Not much. Health Care is good in France; an emergency room visit costs about $120, and a doctor’s visit goes for less than $30.

When someone is in the U.S. doesn’t have insurance and has an emergency, they get a bill. When the hospital or physician that provided the care didn’t have a contract with the person’s insurance company, and the policy only covers in-network emergencies the bills for the service can be enormous.

In San Francisco, as the Chronicle put it, injured parties “can (now) rest easy,’ “If you’re hit by a car, shot, fall off a roof or suffer any other major injury, you can now receive top-notch medical care at the city’s only trauma center without risking bankruptcy.”³⁵

In early 2019, San Francisco General Hospital, the city’s trauma center, was under pressure for its unfair billing system. The hospital had no contracts with insurance companies. All the care it provided was out-of-network. As a result the city could bill as much as their self-determined rates allowed. Health Insurance companies could kick in as little as their self-determined policies permit. The difference, thousands of charged and unpaid dollars, became the burden of the ill and injured people who showed up in the facility’s emergency room. “Three simple appendectomies left stunned patients on the hook for bills ranging from “$54,000 to $92,000”. Well meaning doctors, nurses, clerks, and ambulance drivers were treating people’s physical maladies and destroying their economic well being. The city owned the hospital, and taxes paid for some of the care. Then– in place of being fiscally “prudent”, the hospital did something that, best I can tell, was unprecedented. They adopted a humane approach. They stopped billing poor people. And they charged a maximum of $4800 to people who earned $121,000 (single person) or $250,000 (family). The affect on the hospital’s income was a fifth of a percent.

Insurance companies have long argued that “networks” allow them to control the cost of care. They meet with hospitals, agree on fees, and sign in-network agreements. New York and a number of other states have laws “that cap or limit charges for services that are delivered out-of-network, especially for emergency care.”²³

“Between 2010 and 2016 the number of out of network bills rose from 32.3% to 42.8%; the number of inpatients who got an out of network bill for some of their care rose from 26.3% to 42%. The cost of an ER visit, in that six year period increased, on average from $220 to $628 and hospitalization charges rose from $804 to $2,040.” Fifteen percent of hospitals have out-of-network billing rates that are 80 percent above the standard rate. Some of the physicians in one study charged over 600% of the Medicare rate.²³

California AB 1611 would have limited the fees charged for people who have insurance, but, due to a medical emergency, are seen at a hospital that’s “out of network.” As it was about to be proposed to the state Senate health committee the sponsoring legislator “pulled” it as a result of “insurmountable” opposition from lobbyists and CEOS for California hospitals”¹⁵

10 percent of anesthesiologists, pathologists, and surgical assistants sent patients who have insurance a bill because their insurer refuses to pay or only pays a portion of the bill.

They call the process “balanced billing” and it’s no longer legal in California. In 2009 the California Supreme court ruled that the 1975 Knox-Keene act implicitly forbids “balanced billing” for certain but not all types of insurance.

At present, there are more than 4,500 emergency departments in the country, and they are staffed by about 40,000 physicians. One investigator found that “65 percent of hospitals contract out their emergency providers.²⁴” Another that two large companies EmCare and TeamHealth control 30 percent of the physician market, establish fees, and send bills. In Texas the three largest insurance companies “had no in-network emergency room doctors²⁴.”

California bill AB72 limited the amount people pay when they get elective care at an “in network” facility but part of the care is provided by a physician who is “not in network.” Physicians can’t charge “more than the in-network cost-sharing amount.”

I’m a physician. 2 decades back an out-of-network physician operated on a disc in my neck. I asked him how much he would charge and he said he didn’t know. Someone would send me a bill. Our visit lasted half an hour in the office and Surgery may have taken two hours. He was great and the operation went well. I spent the night in the hospital and didn’t need any post op pain medicine. Just coffee. My bill for “his role” arrived in the mail. $8000. I saw him a few weeks later for my only post op visit and I handed him a check for $4000. Is that O.K.? He looked stunned. I have no idea what he was thinking, but he took the money and when I left he shook my hand.

Affordable quality health care became a “right” for federal employees in 1960 when “The government began to contribute 72% to 75% of the cost of the health care insurance premiums.” That brought the price of the policies way down. “At least 10 fee-for-service plans” compete in a special marketplace congress created. Applicants don’t have to worry about their age or any pre existing conditions. More than 8 million people who work or have worked for the federal government—and their spouses, dependents, and retirees—and legislators and their families– were allowed to buy the insurance. About 90 percent of the employees of the federal government participate. The FEHB, federal employees’ health benefit program, is administered by an agency of the government whose director is appointed by the president. The privilege/right is technically called a managed care scheme. (A right may or may not be self evident ; it may or may not be endowed by our creator; but when it is granted and funded by the government it exists.¹⁷)

As part of the Affordable Care Act, members of congress and their staff members lost the ability to purchase insurance through the FEHB. To maintain their “right” to affordable, quality medical care they established a new way to buy highly subsidized care. They are using the DC health care exchange, and the government still kicks in 72% of the cost of the premium—for those who chose a gold plan. When and if one of them retires with five years of government service under their belt they can again be insured through the FEHB.¹⁹

In 1993 children whose insurance didn’t cover the cost of 16 important vaccines were given the right to receive them free. Congress created the Vaccines for Children Program, the CDC (center for disease control) managed it, and 40,000 doctors throughout the country administer the vaccines.

In 1811 federal legislators established and funded a home and medical clinic for military veterans. Fifty years later, after half a million fighting men died of wounds and illness in our destructive civil war (1860-64),the government created a number of veterans homes – that “incidentally” provided medical and hospital treatment.

50 years thereafter our nation entered the First World War (1917-18). 116,000 men lost their lives. Many more were wounded and disabled–and a number of facilities were built. After they were officially launched in 1921, the Veterans Administration started building hospitals. By 1948 there were 125, and the VA currently says they operate 1600 health care facilities.⁵ They once cared for all service men and women who had been on active duty, even briefly. After September 1980 the government began limiting the pool by requiring a “minimum length of service.”

Indian Health, while being a right, is also a small underfunded and significant part of the care supplied by the federal government. In the centuries that followed Columbus first voyage, 95% of the continent’s indigenous people died. The Europeans brought infectious illnesses with them that were unknown and had never been confronted by the immune systems of the people of the continent.³³ “Smallpox undoubtedly played a huge part in the fall of the Aztec Empire.” Early settlers alternatively courted and hunted the people of the land. Some of our elders tried to integrate natives into our society; others gave them terrain which was “eternally theirs”, and still others reneged on one promise or another. In 1830 President Andrew Jackson signed the law that officially required tribes living east of the Mississippi River to relocate on lands west of the waterway. They moved only to later discover that many Americans believed the United States was “destined to expand across the North American continent, from the Atlantic seaboard to the Pacific Ocean.” Over the centuries some natives came to our cities and many blended in. (There are clinics for Native Americans in Oakland California and many other large towns.) For others there were reservations, (areas of self government that are “managed” by the U.S. Bureau of Indian Affairs).

The war department got involved in the health of the Native populations in the 1800s after they decided to vaccinate the indigenous people against Small pox to protect soldiers in remote forts. In the 1880s the Department of the Interior constructed infirmaries and hospitals.

The government’s involvement in any kind of health care was pretty limited until Congress passed the massive Public Health Service Act of 1944 and established the NIH (National Institute of Health) the CDC (Center for Disease Control), and the now defunct Public Health Service hospitals. The Indian Health Service was created and added to the mix in 1955. Serving half of the known Native Americans of the day, the VA like system covers the people who lived on the remote rural reservations, and they run urban clinics that do what they can for the indigent Native Americans in our cities. Half the identified Indians try to maintain their distinctiveness. The service is “culturally sensitive.” Local beliefs and traditional practices are blended with the modern medical model. The emphasis is on public health and community outreach activities. In her book The Scalpel and the Silver Bear, Lori Alvord M.D. a Stanford educated, half Navajo, physician who practiced medicine at an Indian Hospital recalled how the chant of a medicine man gave emotional strength to a male with advanced cancer. She had removed his tumor and he was receiving chemotherapy, but he was despondent and had lost hope before the “singer” arrived and performed a ceremony known as a Chantaway. As she explained, different songs and ceremonies help different illnesses: If an accident caused the disability, the Lifeaway ceremony was performed. The Shooting way was chanted if an arrow or lightning was the source of the problem.²⁰

The federal government spends $3.5 billion a year for a service that delivers health care to 1.9 million of the nation’s 3.3 million American and Alaska Natives. The “system” is large and spread out. By their count there are 31 hospitals, 63 health centers, and 30 health stations plus 34 urban Indian health projects. They are staffed by 2,400 nurses, 800 physicians, 400 engineers, 500 pharmacists, 300 dentists, and 300 sanitarians. The patient pays nothing, not even a co pay, for testing, drugs, or hospitalization. Part of the funding for the Indian health service comes from other government programs. If a patient was covered by Medicare, Medicaid, or had insurance through their work, the insurer could be billed, and the money could be used to help cover the costs of care.

The facilities are up to snuff. All 31 IHS-operated and all 14 of the tribally operated hospitals have been inspected and accredited.

Despite this the Indian life expectancy (72.3 years) is still about 4.6 years less than that for the U.S. general population (76.9 years). Death rates for some conditions are significantly higher. Tuberculosis is 750% more common, and there are elevated rates of alcoholism (550% higher), diabetes (190% higher), unintentional injuries (150% higher), homicide (100% higher), and suicide (70% higher).

Juliet told Romeo that a rose by any other name would smell as sweet. In this country most have the right to affordable health care. Many are left out. We don’t call a spade a spade. And many have lost their ability to smell.

Over the last 80 years one group of Americans then another has acquired the right or expectation that they will receive the health care they want or need. At times their access is funded by the government through taxes. On other occasions employees receive benefits in place of a good wage or the care is provided by employers who get tax breaks. At the same time many people living in our country are excluded.

The medical care most of us currently access is a combination of high tech studies, procedures performed by skilled specialists and primary care:

Preventive interventions— an array of vaccines that prevent many acute and chronic diseases and a few cancers: Immunizing newborns whose mothers have hepatitis B can prevent a future case of liver cancer. When teen age girls receive the vaccine that prevents infections with human papilloma virus they are much less likely to someday develop cancer of the cervix.

Screening: People are checked for, among other problems, hypertension, diabetes, elevated cholesterol, HIV, hepatitis C, and glaucoma.

Diagnosis and treatment: By the 21^st century, 4000 medical and surgical interventions had been classified; more than 1400 medications were available–or unavailable. The “craft” has become so complex that doctors and nurses increasingly have to specialize. In 2003 the 3 billion base pairs of human genome had been sequenced. Much as the musical score is a sequence of notes or a novel is a sequence of letters of the alphabet, the code that tells every cell in our body what to do is a sequence of the 4 letter DNA alphabet. After they were able to access the DNA scientists started assailing the genetic diseases of man.¹

When asked if they thought health care was a right, people interviewed in Athens Ohio pointed to neighbors who were unwilling to work yet qualified for “Medicaid”, the taxpayer funded program for the very poor. One of the people interviewed thought “People should contribute to the cost”. Health care shouldn’t be free unless you’re really hard up. At the same time, as one citizen explained, “You shouldn’t have to worry about medical care anymore than you worry about “the fire department, or the police…or the roads we travel on.”⁴³

https://www.medicaid.gov/about-us/program-history/index.html

2. David Barton Smith. The Power to Heal. Nashville: Vanderbilt University Press, 2016 https://americanhistory.si.edu/brown/history/6-legacy/deliberate-speed.html.

3. https://khn.org/news/1965-the-year-that-brought-civil-rights-to-the-nations-hospitals

4/ https://www.usnews.com/news/articles/2015/07/30/desegregation-the-hidden-legacy-of-medicare

5. https://www.ncbi.nlm.nih.gov/books/NBK234191/

6. JAMA 1990;264:1980-1983.

7. https://catalyst.nejm.org/the-big-business-of-dialysis-care/

8. https://www.nejm.org/doi/full/10.1056/NEJMoa0904655

9. https://www.niddk.nih.gov/health-information/health-statistics/kidney-disease

10. NEJM June 9, 2011; p. 2183

11. Nearly 20 percent of dialysis patients stop dialysis prior to death.⁹ and, increasingly, older patients are choosing not to begin dialysis, in part due to poor outcomes and decreasing functional status with dialysis. Now and then people whose lives could be prolonged by dialysis choose to die of uremia. I’m thinking of the famous humorist Art Buchwald. In his later years he had diabetes and high blood pressure; when he was 74 he had a significant stroke. 6 years later a leg was amputated. I don’t know when he started dialyzing his blood, but in 2006, when he was 80 he decided to stop. He made an announcement and apparently described his decision as his last hurrah. Contemplating death he wrote “the question isn’t where you are going, it’s what you are doing here in the first place.” By one account when he stopped dialysis he entered hospice and friends wrote Eulogies. But he didn’t die. So he wrote a book called Too Soon to Say Goodbye; in it he included some eulogies friends had written months earlier. A year after he stopped dialysis his heart stopped beating. The cause of death was kidney failure.

12. Estelle vs. Gamble. https://www.oyez.org/cases/1976/7

13. https://cchcs.ca.gov/wp-content/uploads/sites/60/2017/08/pr_070506.pdf

14. The Troubled Health Dollar by Steven Fredman. Virtualbookworm.com Publishing (February 27, 2012)

15. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1305897/

16. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1305897/ https://one.nhtsa.gov/people/injury/ems/emstraumasystem03/comprehensiveIII-leadership.htn

17. https://stateofreform.com/news/states/california/2019/07/californias-surprise-billing-legislation-stalled-for-the-year/

18. Out-of-Network Emergency-Physician Bills — An Unwelcome Surprise NEJM Feb 17, 2019 Zack Cooper, Ph.D., and Fiona Scott Morton, Ph.D. November 17, 2016 N Engl J Med 2016; 375:1915-1918 https://www.healthaffairs.org/do/10.1377/hblog20180924.442050/full/

19. https://www.natlawreview.com/article/balanced-billing-california-update-regarding-2016-s-ab-72-and-overview-newl

20. https://en.m.wikipedia.org/wiki/Federal_Employees_Health_Benefits_Program

21. https://publichealthonline.gwu.edu/healthcare-price-cost-transparency/

22. https://www.npr.org/sections/health-shots/2017/04/12/523335954/what-happens-to-a-congressmans-health-insurance-if-obamacare-goes-down

23. The Scalpel and the Silver Bear by Alvord, Lori Arviso,M.D. Bantam. 1999.

23. https://forabettertexas.org/surprisebills/img/2017_HW_SurpriseMedBill.pdf Out-of-Network Emergency-Physician Bills March 2, 2017 N Engl J Med 2017; 376:898-900

https://www.nejm.org/doi/full/10.1056/NEJMc1700368

25. https://isps.yale.edu/sites/default/files/publication/2017/07/surpriseoutofnetwrokbilling_isps17-22.pdf

26. . https://isps.yale.edu/sites/default/files/publication/2018/03/20180305_oon_paper2_tables_appendices.pdf