Category Archives: Philadelphia

A national crisis, hyperlocaled to Mount Airy

Notice: I am neither dead nor AWOL. Just busier than ever, with a suddenly-really-pending deadline, new blogging at Guernica, and reporting for Newsworks.org – the web portal of WHYY, my local PBS/NPR station.

Here is the very first story I ever pitched to WHYY’s Alan Tu, back in September, Given my background in sussing out tenant stories in Manhattan, I knew quickly that there had to be a story in our slice of the national foreclosure crisis. It’s a story about predatory lending, about neighborhoods, and about a pioneering legislator who figured out 30 years ago what to do about all this.

The story’s also a phoenix: it sat in the pending pile, right behind breaking news, until the city suspended all foreclosures AND I happened upon the perfect interview subject. I hope it absorbs and amuses some folks.

Now to my follow-up story, and to cutting my book manuscript by two-thirds.

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Henrietta Lacks’ grandkids: “How can you judge the 1950s by the ethics of today?”

When Rebecca Skloot walked into the Kimmel Cancer Center in Philadelphia last week to talk about The Immortal Life of Henrietta Lacks, she was riding a wave of positive reviews for the book she had been working on for nearly half her life. The Boston Globe had called it “a well-written, carefully researched, complex saga of medical research, bioethics, and race in America.” Salon termed it “a heroic work of cultural and medical journalism,” and the New York Times thought it “a thorny and provocative book about cancer, racism, scientific ethics and crippling poverty [that] floods over you like a narrative dam break.”

At the Kimmel Cancer Center (part of Thomas Jefferson University), the crowd was made up of scientists and physicians, many of whom knew Henrietta Lacks only as HeLa, for the cell line named after her unusual, fast-growing cells. Over the years, HeLa cells have been used for cancer research, to test the polio vaccine, unlock the secrets of DNA transcription, and thousands of other medical projects.

Among the crowd was Dr. Leonard Freedman, dean of research at Thomas Jefferson, whose lab invented a new tool for DNA research using HeLa. “You know, I used to do a lot of science with these cell lines,” Freedman said to this reporter just before the lecture. But the book was a revelation: “We knew the cells came from some woman, but we even had her name wrong. And we certainly didn’t know any of what’s in the book.”

Dr. Edith P. Mitchell.

The same was true for Dr. Edith P. Mitchell, a clinical professor of medicine and program leader in the school’s Gastrointestinal Oncology program (and a general with the Missouri National Guard. “My first exposure to HeLa cells occurred when I was a young student, and was told not to contaminate anything,” Mitchell explained, “because, and I quote, ‘Those HeLa cells will grow all over the place.’”

All of this, Mitchell added, made her eager to secure Skloot as the center’s lecturer for Black History Month. Some might find this a paradoxical choice, seeing Henrietta Lacks’s story as a prime example of the medical community’s injustices to African-Americans. (For more on this history, see Medical Apartheid by Harriet Washington, who helped advise Skloot on her book.) Mitchell had a different view: “What does all this have to do with Black History Month?” she asked the crowd. “I say it’s connected to our history—by which I mean,” she said, glancing pointedly at the mostly white faces, “the history of the human race.”

Skloot asked the audience of 200: “How many people in the room knew about Helen Lane, before today?” About 100 hands went up. “And how many have worked with HeLa cells?” Two dozen raised their hands.

Then Skloot began to trace the story of a young mother of five who came to a clinic at Johns Hopkins, in 1951 “the only hospital in Baltimore that would see black patients,” after discovering a lump on her cervix.

Back then, “informed consent” laws didn’t exist, she added. The only consent needed was the patient’s signature on a form granting Johns Hopkins permission “to perform any operative procedures that they may deem necessary in the surgical treatment of Henrietta Lacks.”

It was immediately clear that Lacks had a full-blown tumor. She was given the prescribed treatment of the time, a course of radiation. But her diagnostic lab sample soon took on a life of its own.

That specimen, Skloot explained, was sent somewhere having nothing to do with treatment: to cell biologist George Gey, inventor of the “roller drum” used in labs worldwide, who was in the process of gathering all the cervical-cancer cells he could find.

“Gey thought he could isolate cells that had characteristics that were only cancer,” said Skloot. “So he collected them, but until he got Henrietta’s, the cells just always died. Hers didn’t.”

In fact, they doubled every four hours. The manically reproducing cells behaved the same way in Lacks’s body: she died eight months after entering the clinic. But her cells now had their own rooms at Johns Hopkins, and Gey was beginning to publish the fact that he’d found and perfected the line he called HeLa. Soon every scientist wanted his own supply, and eventually facilities were built to mass-produce HeLa cells and ship them around the world.

“I first heard about the HeLa cells when I was 16, at community college taking a class for high school credit,” said Skloot. “My teacher said what all teachers said in those days: ‘There are these cells, there was this woman, her name was Henrietta Lacks, and she was black.’ And I was like, That’s it? That’s all we know? He told me to go find out some more and write an extra-credit paper about it,” she laughed. “About a year ago I sent him my manuscript for this book: ‘Hi, remember that paper I owe you?’”

It took Skloot nearly two years to gain the confidence of Henrietta’s daughter Deborah Lacks- Pullum, whose journey to understanding is the core of Skloot’s book.

“I was just the next in a line of white people who wanted something,” Skloot said, adding that she gained Lacks-Pullum’s trust only after she offered to include her on the quest, taking her on lab visits and field research. During the years that HeLa had become increasingly renowned—the first cells to go into space, the first whose genes were mapped—the family, back in Baltimore and Virginia, had been largely unaware that Henrietta’s cells had even survived.

Asked what the family thought of her book, Skloot said that “there was a lot of pain associated with the story to them, and there were certain parts they avoided—like accounts of her death. But I think it was also sort of cathartic.” Deborah Lacks-Pullum remained deeply traumatized for many years. After learning about the HeLa cells and the research it had facilitated, said Skloot, “she believed her mother’s soul was in these cells. She wondered, ‘How can my mother rest in peace, if you’re shooting her cells to the moon?’”

Graphic from WIRED Magazine shows the global reach of the HeLa cells.

Other members of the family were, and are, passionately angry. “Her brothers became very angry when they knew the cells were being bought and sold,” said Skloot. She pointed out that any researcher in the hall that day could go online and buy a vial of HeLa for about $250, with other HeLa-derived products costing up to $10,000. Meanwhile, many members of the Lacks family are without health insurance. “They keep saying, ‘If our mother is so important, why can’t I get access to health care?’”

Skloot cautioned that the facts don’t support the media hype that something illegal has been done. Over the decades, she said, stories about the Lackses ran like much of the negative coverage of her book: Woman’s cells stolen, millions made, family still poor. But there’s no evidence of actual theft in a country where consent laws were hazy, she said—only a built-in structural injustice toward people without power.

“George Gey has been held up for decades as this guy who stole her cells, maybe didn’t treat her right,” said Skloot. On the other hand, some scientists have objected to the fact that the book raises ethical issues at all. “One stood up and told me it was irresponsible to tell the story, that this is going to give people the idea that they own their cells.” But Skloot refuses to see the story in cut-and-dried terms. “This has been held up as another Tuskegee,” she said, referring to the notorious forty-year syphilis study that used sharecroppers as its subjects, “and it’s just not.”

According to Skloot, even Lacks’s grandchildren don’t think so. Most of them are in their thirties, she said, “the first generation to have much schooling—one granddaughter is finishing up a masters’ in psychology. And they look at this whole thing from a very different perspective from their parents, saying things like ‘You can’t judge the 1950s from the ethics of today.’ They’re very proud to have come from her.” When the family came up to New York for a book-signing like this one, she said, “the room sort of erupted in cheers. All the scientists were saying to them, ‘This is what I did with the cells, this is what’s important,’ and asking them for autographs.”

With Roland Pattillo of Morehouse College, Skloot has set up the Henrietta Lacks Foundation to benefit the Lacks family. She spoke of one scientist who pledged to donate to the foundation: “‘A dollar every time I process a batch of these cells,’ he said. So I got a dollar and a dollar, and then he realized, ‘Whoa, this is going to add up!’”

Another potential source of compensation for the Lackses is a movie or TV adaptation, which would require producers to purchase not only rights from Skloot but ‘life rights’ from the family. The book has already sparked quite a bit of interest from studios, she said. Like Henrietta Lacks’s immortal cells, her story—complex, controversial, and needing to be told—is likely to be with us for some time to come.

First posted at Women’s Voices For Change.

Some news and a promise

I almost literally crawled under a rock toward the end of the year, in an effort to finally get this book completed. I can now report honestly that it’s almost there. (For a cheat sheet on its ultimate shape, check out my draft introduction at the book’s own site.)

Some  bits and pieces from around here – some more personal than usual:

  • With the book’s delivery in sight (promises, promises, I know, but….), I’m now blogging daily (ditto) at the Ain’t Marching site. Subscribe to its feed if you can so you don’t miss out. Today, for example, I comment on two medical-whistleblower stories, and on the intrepid reporters who’ve been crucial in exposing them.
  • Speaking of intrepid reporters, the unparalleled Jina Moore keeps breaking new ground, and rolling out new features from her work in Liberia (a project of the Pulitzer Center on Crisis Reporting).  Check it all out at her new site: this week she has a LONG, smart piece in the Christian Science Monitor Sunday mag, but I’m also intrigued by her older, sly piece on the guy who stole all the lawbooks, citing intellectual-property laws. (He needs some African Stephen James Joyce to give him a spanking.)
  • The web magazine I edit, Women’s Voices for Change, just gave me a taste of what it’s like to be in the magazine world: huge changes, a few layoffs, and a hot new editorial director who’s promised to make it famous. I’ll keep you posted as things proceed.
  • Meanwhile, I’m waiting to see if these folks find my work interesting enough to invite me in and give me hell for a few years. Maybe I won’t have to write more than two books that took Ph.D,-level work without that degree to show for it.

for more Mount Airy news….

go here, from now on. As the book’s publication year approaches, I need to give more energy here to its concerns. But I did want to let you all know how the move came out!

I’ve mentioned, methinks, that I’ve  had a longstanding not-so-secret crush on the City of Brotherly Love (and sisterly affection) for more than ten years, a side grace note to my torrid love affair with the city of my birth. New Yorkers (and I’ll likely call myself one till I die) like to feel with Colson Whitehead that “I was born here, and thus ruined for anywhere else…..” The first Pelham in the subject line is Pelham Bay, the Bronx neighborhood from which I [was] sprung.

But I’ve always had  a soft spot for small cities, and when I first got to know Philly I was living in San Francisco, which is even smaller, and came here because my organization had an office here. Philly struck me as a cross between Baltimore, where I once moved to heal from divorce, and that other colonial town where the Lenape first met Europeans.

Of course, as you know I actually moved nearly a year ago from Manhattan, to which I moved in 2000 an exultant new lover. The circumstances even made the papers. But it wasn’t until a couple of months ago that we felt able to look for an apartment here — and less than a month ago, had the incredible luck to find a place in Mount Airy, not the first Philly nabe I fell in love with (that honor goes to Old City) but a place that already feels almost as much home as did Washington Heights/Inwood, where we lived for six years, or my long-cherished Mission District. (Those two years in Greenwich Village were dreamy, but always felt borrowed.) I do feel a little like a stereotype, being so happy about the food co-op, the lesbian-owned bookstore, but there we are.

phillyview

Mount Airy, where we live now, is none of those places: it’s completely itself. Its history is slightly younger than NYC’s, though settled first by Germans in the 1680s (and first called by the English “Beggarstown,” which feels kind of appropriate for us if not the actual neighborhood).

Boy_with_SquirrelThe major street nearest to me also bears the name of Pelham, an estate owned by the Revolution’s hardest-working engraver (or someone else in his family). We don’t live in one of the nabe’s stained-glass beauties, but a Victorian that has its own deep charm

I’m writing this now as a transitional post between this and New in Philadelphia. There, I might feel more free to include quieter observations, like how it feels to be reunited with a cat or why I’m beginning to suspect that I’m actually in Berkeley.

the Mount Airy thing with feathers

As Woody Allen said many years ago:”How wrong Emily Dickinson was. Hope is not the thing with feathers. The thing with feathers is my nephew. I must take him to a specialist in Zurich.” What hope has is claws.

If you told the girl from that Times article that she would soon be living in one of our favorite Philadelphia neighborhoods,  five blocks from Philly’s top food co-op and our version of Mudwimmin Books, she’d have told you two things: 1) You’re dreaming, and 2) What is this, 1988?

I’m superstitious enough not to say much more. I was gonna use a Back to the Future clip, but the one above summarizes how we feel about it. More after June 1, when I’ll no longer worry that it was all about as real as that TV show I keep referring to.

not the way I wanted into the Times

Because people keep asking:  yes, that’s me.  I’d volunteered to talk to Joyce Wadler mostly hoping for some free publicity to Women’s Voices for Change.org, not realizing that my  little joke about the commercial made me quotable enough to be the lede of the story.

For the record: she mistook my monthly net pay from Chelsea Now for our rent (it was a lot lower), and she sharpened the contrasts I’d described.  e.g. I’d told her only that R and I had “fratboy tendencies,” for example, not that we always went there. And she didn’t mention the story’s happy ending; that now that Rache has a job and we’ve saved up a deposit et al., we were by then actually starting to look for a Philly place of our own.

But I’m sure I’ve done worse as a journo without knowing it. In any event, let’s hope that when my book is published, the Times will pay enough attention to consign that clip to comedy, as it deserves.

call it love or call it reason

More flotsam from my life-on-Mars phase:

I didn’t know this video existed, until now. I wish I had a clip of Ochs’ performance at the first Winter Soldier (two years later than this TV appearance) but this is good enough  for now. Knowing that the vets in Detroit heard Ochs’ anthem, just before four days of hearings on war crimes, makes me feel more certain than ever that I chose the right title for the book.