The Immortal Life Of Henrietta Lacks Part 39

I jumped out of the car and ran into the field, to the spot where the old movie theater once stood-where Henrietta and Cliff once watched Buck Jones films. It was gone. So was Gregory and Martin's grocery and Abbott's clothing store. I stood with my hand over my mouth, staring in disbelief at the empty field until I realized there were splinters of brick and small white plaster tiles pressed into the dirt and gra.s.s. I knelt down and began collecting them, filling my pockets with what remained of the town of Henrietta's youth.

I have to send some of this to Deborah, I thought. She's not going to believe Clover is gone.

Standing on Main Street, staring at the corpse of Clover's downtown, it felt like everything related to Henrietta's history was vanishing. In 2002, just one year after Gary had wrapped his hands around Deborah's head and pa.s.sed the burden of the cells on to me, he'd died suddenly at the age of fifty-two from a heart attack. He'd been walking toward Cootie's car, carrying his best suit to put in the trunk so it wouldn't get wrinkled on the way to Cootie's mother's funeral. A few months later, Deborah called to say that Cliff's brother Fred had died from throat cancer. Next it was Day, who died of a stroke, surrounded by his family. Then Cootie, who killed himself with a shotgun to the head. Each time someone died, Deborah called crying.

I thought the calls would never end.

"Death just following us and this story everywhere we go," she'd say. "But I'm hangin in there."

In the years that followed the baptism, not much changed for the Lackses. Bobbette and Lawrence went on with their lives. Lawrence didn't think about the cells much anymore, though occasionally he and Zakariyya still entertained the idea of suing Hopkins.

Sonny had a quintuple bypa.s.s in 2003, when he was fifty-six years old-the last thing he remembered before falling unconscious under the anesthesia was a doctor standing over him saying his mother's cells were one of the most important things that had ever happened to medicine. Sonny woke up more than $125,000 in debt because he didn't have health insurance to cover the surgery.

Zakariyya got kicked out of his a.s.sisted-living facility, then a Section Eight housing project, where he smashed a forty-ounce beer bottle over a woman's back and pushed her through a plate-gla.s.s window. He sometimes worked with Sonny, driving a truck.

In 2004 Deborah left her husband and moved into an a.s.sisted-living apartment of her own, which she'd longed to do for years-she was tired of fighting with Pullum, plus their row house had too many stairs. After she moved out, to cover her bills, she went to work full-time for her daughter Tonya, who'd opened an a.s.sisted-living home in her house. Each morning Deborah left the a.s.sisted-living facility where she lived, and spent the day cooking and cleaning for the five or six men living in her daughter's home. She quit after two years because her body couldn't take walking up and down stairs all day.

When Deborah officially divorced Pullum in 2006, she had to itemize her income as part of a request for the judge to waive her filing fee. She listed $732 per month from Social Security Disability and $10 per month in food stamps. Her checking account was empty.

When I went back to visit Clover and found Main Street razed, it had been a few months since Deborah and I talked. During our last call, I'd told her that the book was done, and she'd said she wanted me to come to Baltimore and read it to her, so I could talk her through the hard parts. I'd called several times since to plan the visit, but she hadn't returned my calls. I left messages, but didn't push her. She needs some s.p.a.ce to prepare herself, I thought. She'll call when she's ready. When I got home from Clover, I called again saying, "I brought something back for you from Clover-you won't believe what's happened down there." But she didn't call back.

On May 21, 2009, after leaving many messages, I called again. Her voice-mail box was full. So I dialed Sonny's number to say something I'd said to him many times over the years: "Will you tell your sister to stop messing around and return my calls? I really need to talk to her. Our time is running out." When he answered the phone I said, "Hey Sonny, it's Rebecca," and for a moment the line went silent.

"I've been trying to find your phone number," he said, and my eyes filled with tears. I knew there was only one reason Sonny would need to call me.

Deborah had gone over to her niece's house on Mother's Day, a week and a half before my call-Sonny had made crab cakes for her, the grandchildren were there, and everyone laughed and told stories. After dinner he took Deborah back to the apartment she loved and said good night. She stayed home the next day, ate the leftover crab cakes Sonny sent home with her, and talked to Davon on the phone-he was learning to drive and wanted to come over in the morning to practice. The next morning when he called, she didn't answer. A few hours later Sonny dropped by to check on her, as he did nearly every day, and found her in her bed, arms crossed on her chest, smiling. He thought she was sleeping, so he touched her arm, saying, "Dale, time to get up." But she wasn't sleeping.

"She's in a better place now," Sonny told me. "A heart attack just after Mother's Day-she wouldn't have wanted it another way. She's suffered a lot in life, and now she's happy."

After finding Deborah in her bed, Sonny cut a lock of her hair and tucked it inside their mother's Bible with the locks of hair from Henrietta and Elsie. "She's with them now," he told me. "You know there's no place in the world she'd rather be."

Deborah was happy when she died: her grandson Little Alfred was now twelve, headed into the eighth grade, and doing well in school. Lawrence and Bobbette's granddaughter Erika had gotten into Penn State after writing an admissions essay about how her great-grandmother Henrietta's story had inspired her to study science. After transferring to the University of Maryland, she earned her bachelor's degree and entered a master's program in psychology, becoming the first of Henrietta's descendants to attend graduate school. At seventeen, Deborah's grandson Davon was about to graduate from high school. He'd promised Deborah he'd go to college and continue learning about Henrietta until he knew everything there was to know about her. "That really made me feel okay about dying whenever my time come," she'd told me.

As Sonny told me the news of Deborah's death, I sat staring at a framed picture of her that's been on my desk for nearly a decade. In it, her eyes are hard, her brow creased and angry. She's wearing a pink shirt and holding a bottle of pink Benadryl. Everything else is red: her fingernails, the welts on her face, the dirt beneath her feet.

I stared at that picture for days after her death as I listened to hours of tape of us talking, and read the notes I'd taken the last time I saw her. At one point during that visit, Deborah, Davon, and I sat side by side on her bed, our backs to the wall, legs outstretched. We'd just finished watching two of Deborah's favorite movies back-to-back: Roots and the animated movie Spirit, about a wild horse who's captured by the U.S. Army. She wanted us to watch them together so we could see the similarities between the two-Spirit fought for his freedom just as Kunta Kinte did in Roots, she said.

"People was always tryin to keep them down and stop them from doing what they want just like people always doin with me and the story about my mother," she said.

When the films ended, Deborah jumped out of bed and put in yet another video. She pressed PLAY and a younger version of herself appeared on the screen. It was one of nearly a dozen tapes the BBC had recorded that didn't make it into the doc.u.mentary. On the screen, Deborah sat on a couch with her mother's Bible open in her lap, her hair brown instead of gray, her eyes bright, with no circles beneath them. As she talked, her hand stroked the long lock of her mother's hair.

"I often visit her hair in the Bible," Deborah said into the camera. "When I think about this hair, I'm not as lonely. I imagine, what would it be like to have a mother to go to, to laugh, cry, hug. G.o.d willing, I can be with her someday. I'm looking forward to that."

The younger Deborah said she was glad that when she died, she wouldn't have to tell her mother the story of everything that happened with the cells and the family, because Henrietta already knew. "She's been watching us and seeing all that's going on down here," Deborah said. "She's waiting patiently for us. There won't be any words, just a lot of hugging and crying. I really believe she's up in heaven, and she's doin okay, because she did enough suffering for everyone down here. On the other side, they say there's no pain or suffering. ... I want to be there with my mother."

Sitting between me and Davon on the bed, Deborah nodded at her younger self on the screen and said, "Heaven looks just like Clover, Virginia. My mother and I always loved it down there more than anywhere else in the world."

She stroked Davon's hair. "I don't know how I'm going to go," she said. "I just hope it's nice and calm. But I tell you one thing, I don't want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that's just sad." Then she smiled. "But maybe I'll come back as some HeLa cells like my mother, that way we can do good together out there in the world." She paused and nodded again. "I think I'd like that."

Where They Are Now

Alfred Carter Jr., Deborah's son, is in prison, serving a thirty-year sentence for robbery with a dangerous and deadly weapon, and first-degree a.s.sault with a handgun. While incarcerated, he went through drug and alcohol rehabilitation, got his GED, and taught GED cla.s.ses to other inmates for twenty-five dollars a month. In 2006 he wrote to the judge who sentenced him, saying he wanted to pay back the money he stole and needed to know who to send it to.

Dr. Sir Lord Keenan Kester Cofield's whereabouts are unknown. Most recently, he served several years in prison for trying to buy jewelry at Macy's with a stolen check, and filed several lawsuits while incarcerated. In 2008, after being released from prison, Cofield filed a seventy-five-page lawsuit-his last to date-that a judge called "incomprehensible." He sued 226 parties for more than $10 billion, and argued that past decisions in all his cases should be reversed in his favor, and that anyone who'd printed his name without permission should be included in his suit, because he'd copyrighted his name. I was never able to get in touch with him to interview him for this book.

Cliff Garret, Henrietta's cousin, lived in his farmhouse in Clover until 2009, when his failing health required him to move in with his son in Richmond, Virginia, where he currently lives.

HeLa is still one of the most commonly used cell lines in laboratories around the world. When this book went to press in 2009, more than 60,000 scientific articles had been published about research done on HeLa, and that number was increasing steadily at a rate of more than 300 papers each month. HeLa cells are still contaminating other cultures and causing an estimated several million dollars in damage each year.

Howard Jones, Henrietta's doctor, is an emeritus professor at Johns Hopkins and Eastern Virginia Medical School. He founded the Jones Inst.i.tute for Reproductive Medicine in Norfolk, Virginia, with his late wife, Georgeanna. They were pioneers in the field of infertility treatments, and were responsible for the first test-tube baby born in the United States. When this book went to press, he was ninety-nine years old.

Mary Kubicek is retired and living in Maryland.

Zakariyya, Sonny, and Lawrence Lacks were deeply affected by Deborah's death. Lawrence charged more than $6,000 to his credit cards to cover the cost of her burial, and when this book went to press, Sonny was saving money to buy her a tombstone. Zakariyya stopped drinking and began studying the lives of yogis and others who'd achieved inner peace. He started spending more time with his family, including his many nieces and nephews, who hug and kiss him on a regular basis. He smiles often. Sonny has sworn to uphold Deborah's desire to gain recognition for their mother. Today, when the Lacks brothers talk about Henrietta, they focus on the importance of her contribution to science. They no longer talk about suing Johns Hopkins, though Lawrence and Zakariyya still believe they're owed a share of the profits from HeLa cells.

Christoph Lengauer is Global Head of Oncology Drug Discovery at sanofiaventis, one of the biggest pharmaceutical companies in the world. Many of the scientists working for him use HeLa cells on a routine basis. He lives in Paris, France.

Davon Meade and (Little) Alfred Jr., Deborah's grandsons, live in Baltimore, as do twenty-two of Henrietta's other descendants, including her grandchildren, great-grandchildren, and great-great-grandchildren. Two others live in California.

John Moore appealed to the U.S. Supreme Court, which refused to hear his case. He died in 2001.

Roland Pattillo is a professor at Morehouse School of Medicine, where he continues to hold his HeLa conference in Henrietta's honor each year. Pattillo and his wife, Pat, plan to buy a marker for Henrietta's grave, to be placed near her mother's tombstone in the Lacks family cemetery.

James Pullum, Deborah's ex-husband, is still preaching in Baltimore.

Courtney Speed still runs her grocery store, where she continues to teach local children to do math, and hopes to open a Henrietta Lacks Museum.

Afterword

When I tell people the story of Henrietta Lacks and her cells, their first question is usually Wasn't it illegal for doctors to take Henrietta's cells without her knowledge? Don't doctors have to tell you when they use your cells in research? The answer is no-not in 1951, and not in 2009, when this book went to press.

Today most Americans have their tissue on file somewhere. When you go to the doctor for a routine blood test or to have a mole removed, when you have an appendectomy, tonsillectomy, or any other kind of ectomy, the stuff you leave behind doesn't always get thrown out. Doctors, hospitals, and laboratories keep it. Often indefinitely.

In 1999 the RAND Corporation published a report (the first and, so far, last of its kind) with a "conservative estimate" that more than 307 million tissue samples from more than 178 million people were stored in the United States alone. This number, the report said, was increasing by more than 20 million samples each year. The samples come from routine medical procedures, tests, operations, clinical trials, and research donations. They sit in lab freezers, on shelves, or in industrial vats of liquid nitrogen. They're stored at military facilities, the FBI, and the National Inst.i.tutes of Health. They're in biotech company labs and most hospitals. Biobanks store appendixes, ovaries, skin, sphincters, t.e.s.t.i.c.l.es, fat, even foreskins from most circ.u.mcisions. They also house blood samples taken from most infants born in the United States since the late sixties, when states started mandating the screening of all newborns for genetic diseases.

And the scale of tissue research is only getting bigger. "It used to be, some researcher in Florida had sixty samples in his freezer, then another guy in Utah had some in his," says Kathy Hudson, a molecular biologist who founded the Genetics and Public Policy Center at Johns Hopkins University and is now chief of staff at NIH. "Now we're talking about a ma.s.sive, ma.s.sive scale." In 2009 the NIH invested $13.5 million to develop a bank for the samples taken from new borns nationwide. A few years ago the National Cancer Inst.i.tute started gathering what it expects will be millions of tissue samples for mapping cancer genes; the Genographic Project began doing the same to map human migration patterns, as did the NIH to track disease genes. And for several years the public has been sending samples by the millions to personalized DNA testing companies like 23andMe, which only provide customers with their personal medical or genealogical information if they first sign a form granting permission for their samples to be stored for future research.

Scientists use these samples to develop everything from flu vaccines to p.e.n.i.s-enlargement products. They put cells in culture dishes and expose them to radiation, drugs, cosmetics, viruses, household chemicals, and biological weapons, and then study their responses. Without those tissues, we would have no tests for diseases like hepat.i.tis and HIV; no vaccines for rabies, smallpox, measles; none of the promising new drugs for leukemia, breast cancer, colon cancer. And developers of the products that rely on human biological materials would be out billions of dollars.

How you should feel about all this isn't obvious. It's not as if scientists are stealing your arm or some vital organ. They're using tissue sc.r.a.ps you parted with voluntarily. Still, that often involves someone taking part of you. And people often have a strong sense of ownership when it comes to their bodies. Even tiny sc.r.a.ps of them. Especially when they hear that someone else might be making money off those sc.r.a.ps, or using them to uncover potentially damaging information about their genes and medical histories. But a feeling of ownership doesn't hold up in court. And at this point no case law has fully clarified whether you own or have the right to control your tissues. When they're part of your body, they're clearly yours. Once they're excised, your rights get murky.

Kathy Hudson, who has conducted focus groups about the public's feelings on the tissue issue, says she believes that tissue rights have the potential to become a bona fide movement.

"I could see people starting to say, 'No, you can't take my tissues,' " she told me. "All I can say is, we better deal with the problems now instead of waiting until that happens."