Lost Women of Science, Episode 4: Breakfast in the Snow – Scientific American

From the COVID vaccine to pulsars to computer programming, women are at the source of many scientific discoveries, inventions and innovations that shape our lives. But in the stories weve come to accept about those breakthroughs, women are too often left out.

Each season at Lost Women of Science, well look at one woman and her scientific accomplishment: who she was, how she livedand what she found out. Katie Hafner, a longtime reporter for the New York Times, explains the science behind each womans work and explores the historical context in which she lived.

Our first season, The Pathologist in the Basement, is all about Dorothy Andersen, a physician and pathologist who solved a medical mystery when she identified and defined cystic fibrosis in 1938. A passionate outdoorswoman, a rugged individualist and a bit of an enigma, Andersen changed the way we understand acute lung and gastrointestinal problems in young children.

This podcast is distributed byPRXand published in partnership withScientific American.

Episode Transcript

FRANCIS COLLINS: [singing a capella] Dare to dream, dare to dream, all our brothers and sisters breathing free. Unafraid, our hopes unswayed, till the story of CF is history.

KATIE HAFNER: Im Katie Hafner and this is Lost Women of Science, a podcast in which we unearth stories of female scientists who didnt receive the recognition they deserved. We devote each season to the life and work of one woman. Were revisiting the historical record, one extraordinary scientist at a time.

This is the final episode of our first season, The Pathologist in the Basement. Weve been telling the story of Dr. Dorothy Andersen, a physician who was the first to identify the disease cystic fibrosis in the 1930s.

This episode is divided into two parts. One of those parts is linked to that voice you just heard singing. It belongs to Dr. Francis Collins, the outgoing director of the NIH. Dr. Collins is one of the geneticists who isolated the cystic fibrosis gene in 1989. In this episode, well explore advances in CF treatment. And well also explore Dorothy Andersens legacy, starting at the end of her life.

The last living keeper of that legacy is Dr. Celia Ores, a pediatrician mentored by Dr. Andersen in the early 1960s.

CELIA ORES: Can you put this down and we go and pick up Dr. Andersen and put her here on the table?

SOPHIE MCNULTY: Oh, the photo. Yeah. Yeah, let's go. Let's go find the photo.

MICHELLE ORES: I have it here, mom.

SOPHIE MCNULTY: Michelle has them.

CELIA ORES: Oh, okay.

MICHELLE ORES: I have the two photos. I have the one of Dorothy. And the one of you in Switzerland in medical school.

KATIE HAFNER: Were back in the New York apartment of Celia Ores.

Dr. Ores is now in her nineties. Shes holding a black-and-white photograph of Dr. Andersen close to her chest, as she talks to Sophie McNulty, our associate producer.

CELIA ORES: When I came to the United States, she was the only one who treated me really, really well.

KATIE HAFNER: Dorothy Andersen took Celia Ores under her wing, passing on what she had learned about cystic fibrosis, and in turn, Dr. Ores dedicated a large part of her career to patients with the disease.

CELIA ORES: Every little bit of cystic fibrosis that I know is what she told me. She told me everything.

If I had some issues with a patient that I don't fully understand, I went to her and told her that I don't know what I can do next for this patient.

KATIE HAFNER: But she couldnt help everyone. In the 1960s, cystic fibrosis patients rarely lived past their mid-teens.

But the story of cystic fibrosis takes a turn for the better.

And thats the heart of this episode: we believe Celia Ores is the only living person who actually knew Dorothy Andersen well, and in holding that photograph, shes holding Dr. Andersens legacy tight. In this episode, we want to tell you about that legacyand the progress that grew from her lifes work.

KATIE HAFNER: When she was working in the 1940s and 50s, Dorothy Andersen was driven to get the word out about what shed learned about cystic fibrosis. She went on lecture circuits, giving talks up and down the East Coast. When she was on vacation one summer in Europe -- or what she joked was a busmans holidayshe agreed to speak at medical schools and hospitals.

UNKNOWN: Dr. Andersen?

DOROTHY ANDERSEN: If you place a child with the celiac syndrome on a diet designed for celiac disease, you will find that most children with any form of failure to thrive will improve in weight somewhat.

KAITE HAFNER: It occurred to me while putting this season together that I didnt have a clue what Dr. Andersens spoken voice sounded like. But I was lying in bed one night, reading Scott Bairds biography of Dr. Andersen, and I noticed that he mentioned this, just in passing:

Her voice (from a professional recording in the late 1950s) was soft and musical.

I wrote to Scott immediately, and asked if he had the recording. He sent back an excerpt from a recording in which Dorothy Andersen and a few other physicians discuss the syndrome known as failure to thrive. Thats a catch-all term that was used to describe children who werent growing or gaining weight as quickly as they should.

UNKNOWN: Dr. Andersen, wed now like to hear what you have to say about the celiac syndrome, which includes cystic fibrosis and a variety of other conditions, some labeled as celiac disease.

DOROTHY ANDERSEN: The three characteristics of the celiac traid are failure to thrive, the passage of large, undigested stools, and an enlarged abdomen. The two most common diseases in this group are cystic fibrosis of the pancreas and gluten-induced celiac disease. Its fairly easy nowadays to sort out the cystic fibrosis cases from the rest by means of the sweat test.

KATIE HAFNER: Hearing her voice was a revelation. It was like hearing about someone for months then finally meeting them.

But despite all the work Dr. Andersen had done, at the end of the day, CF was still deadly and the stories of the patients were incredibly sadfor the families, of course, but also for the doctors.

CELIA ORES: Well, you go home and cried. It was very, very difficult for me to adjust to it. Because I would see young children that I tried to save from dying. And I didn't always succeed.

KATIE HAFNER: As a pediatrician in the 1960s, Celia Ores did all she could to extend the life of her patients. As did Dorothy Andersen.

CELIA ORES: It was a function to maintain the patient as best you can, as long as you can. And that's exactly what we were doing.

DORIS TULCIN: I knew Dorothy Anderson because she diagnosed my daughter who has cystic fibrosis.

KATIE HAFNER: Thats Doris Tulcin. You met her in episode one. Mrs. Tulcin took her daughter Ann to see Dr. Andersen in 1953, and she helped start the Cystic Fibrosis Foundation in the 1950s.

DORIS TULCIN: And I know that if she were alive today, she would be amazed at the journey that we've gone on for over 65 years.

KATIE HAFNER: Sadly, Dorothy Andersens own health took a nosedive in the early 1960s.

CELIA ORES: Every evening around four o'clock we would have some meeting. And there was five or six doctors, and some of the doctors she liked she would invite. So she would make some tea and we would talk about subjects such and such.

And one day she said in the evening, what are we going to talk about tonight? And the doctor, a male doctor, said, why don't we talk about Dorothys smoking? She said, You know, I like you very much. I think you're a very good doctor and you're a very nice human being, but if you behave like this, I will ask you not to come to our meetings.

[Sophie laughs]

SOPHIE MCNULTY: She was very tough?

CELIA ORES: Well, she didn't want to leave the smoking,

KATIE HAFNER: Research was starting to show that smoking was deadly.

AUDIO CLIP: The committee has reached the overall judgment that cigarette smoking is a health hazard of sufficient importance to the United States to warrant remedial action.

KATIE HAFNER: But many people in the 1950s and 60seven doctors, including Dorothy Andersenwere in denial. She was a lifelong chainsmoker. Almost everyone we spoke to about her mentioned itand this was all the more surprising since she spent so much of her professional life examining lungs that had become incapable of exchanging air.

Smoking eventually killed her.

Sophie McNulty: Do you remember the last time you saw her?

CELIA ORES: Yes. Uh, she was in a room alone and there was a sign, no, no entry, but she called me and I went to her to her to see her.

KATIE HAFNER: Dr. Andersen had always worked to protect Dr. Ores in an environment that was less than friendly to women.

CELIA ORES: And she said that she wanted to apologize to me that she didn't do more for me than she should have.

I told her that I lived under Hitler, I lived under Stalin, and I think I'll be able to survive the people in this unit. If I don't get as much in money or fame, that doesn't bother me.

It was very difficult because the women were considered for nothing.

KATIE HAFNER: Dorothy Hansine Andersen died on March 3, 1963. The cause was lung cancer. She was buried in Chicago alongside her parents.

SOPHIE MCNULTY: After she died, how did your work change?

CELIA ORES: I felt lonely in the hospital. I continued to take care of the children just as much as I did before, but it was... I didn't have anyone to discuss with the things that I discussed with her.

She was my guide. I could come to her and say, you know, such and such, that such and such, you know, I just felt comfortable when she was there.

KATIE HAFNER: After Dr. Andersens death, her farm in the Kittatinny mountains in New Jerseythe farm on which Dorothy Andersen built her cabin with her own hands, the farm where she invited colleagues and friends and put them to work chopping wood, and laying brick for the fireplace, the farm Celia Ores would visit with her childrenshe left that to close friends. Today, that land is a nature preserve.

Dorothy Andersen left her personal papers to Bessie Coombs Haskell.

Wait. Who?? We couldnt find much documentation of this friendship, except the brief mention of the bequest. But, according to people we called, Bessie was a friend of Dorothy Andersenor Andy as she was known to Bessie. Bessie Coombs Haskell ran a camp in St. George, Maine called the The Blueberry Cove Campand used to be a dancer in New Yorkbut we couldnt find much more than that.

Just what was the what, where, when and how of their friendship? What made Bessie Coombs Haskell so important in Dorothy Andersens life that she left her papers to this person, and not, say, to one of her friends in New Jersey, or to Celia Ores, or to another colleague at Columbia? It just goes to show you (and us) that there are many things we will never know about Dorothy Andersens life.

As far as we can tell, Bessie Coombs Haskell kept Dr. Andersens papers until she died. After that, its anybodys guess. We contacted the library in the small town of St. George on the coast of Maine, as well as the local museum and historical society. They had nothing. We did find Bessies grandson, who told us he was pretty sure he threw the papers away after his grandmother died.

At the end of the day, a legacy comes down to the stories people tell us, yes, but also to the things left behind. What gets kept and what gets thrown away. Its haphazard. Boxes get tossed in the trash. This is nobodys fault, but still, its profoundly disappointing.

Its profoundly disappointing because its not like Dorothy Andersen died in a previous millennium, in which case the lack of archival material would be totally understandable. But in the scheme of things, she died relatively recently.

So, one of the lessons I take from our dive into the life of Dorothy Andersen is this: if youre clearing out the basement or attic of a relative whos died, open the boxes. Dont throw out your grandmothers papers, because you just never know.

Coming up, the second part of this episode: Cystic fibrosis in the decades since Dorothy Andersens death. Im Katie Hafner and this is Lost Women of Science.

[AD BREAK]

KATIE HAFNER: Im Katie Hafner and this is Lost Women of Science: The Pathologist in the Basement.

Given all weve just said you might think the story ends with Dorothy Andersens death in 1963. But it doesnt. Her work has pioneered almost a century of science and discovery. To this day, Dorothy Andersens foundational research in cystic fibrosis continues to be built on. In the years since she died, the prognosis for CF patients has just gotten better and better and better.

Dr. William Skach is the outgoing chief scientific officer at the Cystic Fibrosis foundation. Hes been working on this disease for more than 30 years.

BILL SKACH: Well, in the 50s, the therapies were really incredibly simple and supportive.

It was recognized that the mucus in the lung was thick and couldn't be coughed out. So hydrating that mucus became one of the key goals. And, and patients used to sleep in mist tents because they thought that the breathing in the, the mist would then soften those secretions, which didn't really work very well.

Another problem at that time was antimicrobials, antibiotics, for, for the infections because the people with CF frequently got lung infections and that's really what caused most of the damage to the lungs, which was progressive, and, and eventually led to lung failure.

KATIE HAFNER: Parents were the lynchpin of the CF community. In the 1950s, with Doris Tulcin and a handful of others leading the way, parents banded together to form the Cystic Fibrosis Foundation. Today, the CF Foundation has a fund totaling more than $4.5 billion, which is about the same as the endowment of NYU.

BILL SKACH: And I will say that from its very beginning, it was really a collaborative effort with the community, with the scientists, with the physicians, to try to understand the disease better and to really work with the technology and the science at the time to take all of our understanding about the disease and turn it into therapies.

KATIE HAFNER: And it was during this period in the 50s, when Dr. Andersen was still at the forefront, that the focus was firmly on treating symptomsmaking CF patients as comfortable and functional as possible. But, as Dr. Skach points out:

BILL SKACH: With symptomatic therapy, you could only go so far. If you didn't really know what caused the disease, you couldn't really attack the basic root cause and reverse it. And so we got fairly good at treating the symptoms, but not good enough.

KATIE HAFNER: Children were still dying. The life expectancy had slowly been increasing over the years, but it was still devastatingly low.

For instance, in the 1980s, cystic fibrosis patients still werent expected to live much past their teens. Heres Brian OSullivan, the pediatric pulmonologist youve already met. Hes been working with CF patients for more than three decades.

BRIAN OSULLIVAN: And I do remember one family where the teenage girl was, was very sick, had been in the hospital for over two weeks, getting IV antibiotics, and and she had continued to deteriorate, um, and her parents knew she was dying and, and the parents actually came up to me and asked me to give their child permission to die, because they couldn't do it, but they knew she was hanging on just for them.

And so they left the room, I held her hand and told her that she had done everything she could do. She'd put up a great fight, but that she wasn't getting better.

And, uh, shortly thereafter she died, um, and her parents thanked me. Um, and that kind of experience doesn't leave you.

KATIE HAFNER: Around this time, scientists began redoubling their efforts in basic research, much of it funded by the Cystic Fibrosis foundation.

This takes us back to Francis Collinsthe outgoing director of the NIH. Back in the late 1980s, as a geneticist, he led a research team at the University of Michigan that was furiously searching for the CF gene, along with Lap-Chee Tsui, at the University of Toronto.

FRANCIS COLLINS: Lap-Chee and I met at a genetics conference in 1987. And it was clear we were all really struggling, trying to find what was quite literally, in my view, a needle in the haystack and the haystack was really big and the needle was hard to find. And we sat in the sun and talked about what each of our labs was doing as far as our approaches and realized that our approaches were not the same. They were actually beautifully complementary and we kind of decided on the spot and much credit to Lap-Chee, that he was willing to take this leap as well, that we would just merge our labs and we would stop competing. And we would basically become one family of researchers between Toronto and Ann Arbor.

And what seemed like it might be an unsolvable problem got solved in just about two years.

JANE GROGAN: Can you describe the moment when you and, and/or you and the team knew that you had the cystic fibrosis gene or the gene that causes cystic fibrosis?

KATIE HAFNER: Thats Jane Grogan, our scientist-in-residence. Shes an immunologist by training and currently running research in cell and gene therapy at GraphiteBio in San Francisco.

FRANCIS COLLINS: At the time I remember, uh, we were at a meeting. He and I were at Yale. It was one of those human genetics meetings and, uh, he had set up a fax machine in his room. We were all staying in the dorms at Yale, which were, shall we say a little austere.

And we had a very long day. And at the end of the day, he and I went to his room where the fax machine was. And there was all this paper on the floor. That's the way we communicated back then, there was no email.

JANE GROGAN: Some of us sending furious messages, right?

FRANCIS COLLINS: Yes! Cause it was that day's data. And so we pull the papers up off the floor and we began to look at the evidence that this three base pair deletion in a previously unknown gene correlated with cystic fibrosis and that as we looked through the data, it got better and better.

And that was it. That was it for me. That was a rainy night in May, 1989 in New Haven.

And I was like, over the moon, excited.

KATIE HAFNER: This discovery was a big big dealit was on the cover of the journal Science, and it was all over the popular press too. Now that the gene abnormality had been identified, it seemed that a cure for CF was just around the corner.

KATIE HAFNER: And the discovery of the gene has led to all kinds of things, right?

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Lost Women of Science, Episode 4: Breakfast in the Snow - Scientific American