Thursday, February 12, 2015

It Was an Experience

So this was Wednesday's American Experience on PBS. Sounds like it would be something of a downer for TV but American Experience programs are always well researched. They tend to cover things that we forget about as we live in this United States and don't shy away from controversial topics.

This program caught my eye when the announcement of it came through my newsfeed. I have a special connection, if unpleasant, to tuberculosis. My mother's mother's parents died of the disease. Gram didn't talk about the real reason they died until the 1980's, well after she'd retired and was drawing a pension which couldn't be taken away from her. As the dates of their deaths coincided with the end of the Spanish flu outbreak after World War I, it was agreed upon that the family would say they died of the flu. No one would be the wiser. When she finally told us, she shrugged and said, "We lied because to be truthful meant no doctor would see us nor could we get a job or go to school."

I know about the virulent forms of TB currently in the world. I know how difficult it is to eradicate this disease. Indeed, PBS' own Frontline program examined the current state of tuberculosis and treatment almost a year ago. But how could this be a "forgotten plague"? Why did it affect my grandmother and her sister for the rest of their lives? I had to watch the program to find out.

I was hugely disappointed. Perhaps it's my close association with this disease that let me down. Perhaps it's that I'm educated and interested in things like health so I know about TB. Perhaps it's that, with rheumatoid arthritis, I have to be careful because my immune system won't fight off anything like TB. Perhaps it's that, given 55 minutes, AE can't really delve into a study of TB in America. Whatever the case, I've come away with way more questions than there were answers.

The program was based on a book, Living in the Shadow of Death by Sheila M. Rothman. She was one of the "talking heads" who explained points in the program. There were a couple of medical professionals as well as a couple of historians which do give the program weight. That's a good thing about AE. They don't throw many statements or points into the wind to see what would stick. But they made what I call "throw away statements", statements which just beg for further exposition.

For example, there was a statement that TB has been around since there have been medical records. The Greeks knew of it. It was never stated if the Chinese knew or if the Egyptians knew. How far back in recorded history, say the Babylonians?, is there a record of TB. If this disease has been known for thousands of years, how was it treated? Did that treatment change over time or was it the same treatment in Isaac Newton's day as it was when Pliny lived? Is this a strictly European disease or did the natives of the Americas have it?

Next, I would have liked a brief description of what TB is. At one point there was a graphic, which briefly discussed how TB is transmitted, but it went by so fast that the accompanying verbal information was lost. The program would have benefitted from a brief explanation of why it's referred to as "consumption". As TB control and eradication became a public health priority, knowing who had TB and who didn't became important. There were telltale signs that someone had TB. An explanation of what those signs were would have made clear how people with TB were found.

Edward Trudeau, a New York physician, was diagnosed, in 1873. He was told to go to the Adirondack mountains in New York to spend what was thought to be his final summer in a place he loved. His brother had died of the disease and this diagnosis was a crushing blow to his psyche. But, Trudeau got better in the mountains. After going back and forth from the mountains to New York and getting worse in the city, he decided it was the fresh air and sunshine which kept him alive. He moved his family to Saranac Lake, New York. He would live the rest of his life there.

This was the nature of TB control. People with the disease were told to rest and go some place where there was fresh air. With the advent of the transcontinental railroads, whole advertising campaigns were developed by cities out west to lure TB sufferers. I did not know that Albuquerque, New Mexico and Denver and Colorado Springs, Colorado; were billed as the perfect place for TB sufferers to live. Pasadena, California was originally a town created for invalids and Los Angeles hired a marketing director to specifically push the climate for the wealthy consumptive.

A great deal of time is spent dwelling on going west. If you couldn't afford to travel, where did you go, or didn't you go? That's never made clear. Once people arrived at their destination, what then? Social services were not in place to help mass numbers of sick people. This didn't happen until well into the 1960's. A lot of people went west to be "cured" and died.

Trudeau became more and more driven to find a cure. He read everything he could find. In the early 1880's, he stumbled across an obscure paper written by a German doctor, Robert Koch. Koch put forth the notion that many diseases were caused by germs, unseen things which disrupted health. He grew some bacteria in his lab and, when injected into healthy animals, gave them TB. Trudeau spent the next 5 years trying to replicate Koch's experiments. Once he was able to grow the TB bacteria, Trudeau spent years getting the medical establishment to accept this discovery and listen to Koch's ideas about other illnesses.

What were the main objections to acceptance? How did Trudeau persuade doctors? Did Koch have a hand in this? He won the Nobel Prize for Medicine in 1905 for isolating the TB bacteria. Did this acceptance of a microorganism as the cause of this disease change the way doctors practiced? How fast did the news spread?

One of the side effects of this knowledge was the correlation that people spread TB by coughing. That meant that anyone with TB was contagious. There were two known kinds; a virulent kind that claimed its victims within 6 months of diagnosis and a long-term kind where the victim lived with it for 10-40 years. Trudeau's brother and daughter had the former while Trudeau had the latter.

Battling TB because the nation's first public health war. How? Who made the decision? The program didn't say whether there were initiatives from Congress or the White House. It seems it was left up to the states to deal with. In New York, there were special police who went door-to-door in the tenements looking for "consumptives". If you had TB, you were moved, often with as little as 24 hours, out of the home and sent to a sanatorium. Trudeau had established the first one in Saranac Lake. Were families isolated then? Given that families were multi-generational, if mom had TB, did that mean grandpa and junior were ostracized. Given what my grandmother said, it seems they were. Again, there were no social safety nets for people who suddenly lost jobs because of a diagnosis. How much homelessness was a result of this? Where did people go?

There was no discussion of TB in the wars. I know, from reading, that TB was in prisoner of war camps in the Civil War. What about the Spanish-American War and World War I? TB takes awhile to manifest. The strapping young man at the recruitment center could find himself, 8 months out, coughing in a bed in France. How did the military handle this? In discussions with friends online, the military is extremely rigorous in checking for TB, given how quickly it spreads.

The discovery of penicillin was not a boon to TB medicine. Penicillin did not work on the TB bacteria. It would be 1943 before streptomycin was discovered and used. It was discovered by Selman Waksman, a microbiologist, who felt the answer to curing TB lay in the soil. It's never explained why he thought that. He ran test after test on soil samples, growing whatever microorganism he found. His assistant, Albert Schatz, spent hours and hours in the lab growing things and then applying the result to patches of common bacteria. In October of 1943, he discovered an organism that cleaned out the petri dish to which it was applied. He asked Waksman to try it on TB. When it cleared that petri dish, they grew enough of it to send to the Mayo Clinic and in November of 1944, a 21 year-old woman, nearly dead from TB, was the guinea pig. She made a full recovery. Why Mayo? Why her? Who was she? Did it completely eradicate her TB?

It turned out that the one drug was not enough, that TB was a very resistant germ. Patients needed and still need, a course of antibiotics. One immunologist said, "You have to be spot on. You can't give them too much or too little and they have to take it at just the right time." I've read that this is a problem in developing countries. TB can be killed but you have to take all of your meds at the right time and, for homeless people or those without safe water supplies, that can be almost impossible.

There is a brief discussion on how TB mutates. For this program, that was enough because it wasn't about current treatment. It was about the past. There was no real discussion of the TB testing which was done in the schools in the 1950's through the 1970's. I remember those patch tests. They were part of the start of every school year. How effective were they in knowing who had TB? I remember kids bursting into tears when their test got red and swollen. I have to get a TB test every year now, but it's not a skin test, it's a blood test. Is that more effective? When were the arm patch tests ended?

Trudeau's sanatorium closed in 1951. What happened to it? Are there any left, even as repurposed buildings? Is the idea of a sanatorium for TB or other infectious diseases a dead and discredited idea? What was the infection rate amongst those who cared for people in sanatoriums? It seems like people who went there never saw their family again. What was the mortality rate? When Trudeau established his sanatorium, 1 in 7 people was living with TB. Did that rate fluctuate? Were people in sanatoriums allowed visitors? Are there cemeteries where those who died are buried? What does it say on death certificates, particularly in the early part of the 20th century? I don't know if my mother has obtained the death certificates of her grandparents to know what was written as the cause of death.

My great-grandmother was a striking beauty, my grandmother said. She was tall and willowy, with dark eyes. Gram remembered her as having an easy laugh. She didn't remember much about her father. The wedding picture we have shows him to be tall with light colored hair. My grandmother had red hair. My great-aunt, her sister, had brown hair.

She remembered her father lying on a cot in the porch. She remembered him being pale and she remembered hearing the coughing fits. She remembered the doctor coming, often, it seemed. She remembered going to the porch door and leaning her face against the glass. Her father would kiss the glass where her cheek was and wave her good night. When the photo to the right was taken, she was 7 and Irene was 5. Their father had been dead at least a year, at this point. The next year, their mother was gone, taken by the same illness. Francis and Irene went to live with Till and Edward, their father's sister. I do not know what happened to the man in the photo, the father of their mother.

I've ordered the book. I feel a need to know about the effects on society of this disease. I think the title of the program, "The Forgotten Plague" is a misnomer. The average person on the street doesn't know about it, but then, they don't know about the Spanish flu, which unleashed a pandemic at the same time as society was battling TB. Could your weakened effects from fighting the flu have left you more vulnerable to TB? How did the two feed off each other? There's so much I don't know.

Perhaps that's why the program felt incomplete to me. This is a topic which probably deserves more than the 55 minutes it's allowed on a Wednesday night. (That extra 5 minutes is for shilling all the corporate and foundational sponsors, you know.) I do know that the death of her parents had a profound impact on my grandmother. How many other children faced this loss? What was done with them? So many questions.

Beverage:  Water


No comments:

Post a Comment