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Rex V. Brown: A Life

Tuesday, August 15th, 2017

Rex Brown was a devoted family man, a pioneer in the field of decision theory, a warm and brilliant wit, an infuriating contrarian, an irrepressibly generous friend and father, an ever-trying (in both senses) husband, and – if his gracious handling of several terminal diagnoses is any indication — the very definition of a trooper. He died on July 25, 2017 at the age of 83.

He was born on September 25, 1933 in London to Diane Vandesteene Brown, a Belgian immigrant to England. He was raised by Diane and her husband Leon Brown, who Rex learned years later was not his biological father. While his relationship with Leon was marked by tension and mistreatment, he was utterly devoted to his mother and they had a warm, loving relationship. He was also close to his sister Ines.

He grew up during World War II, and almost didn’t survive the blitz; he was recovering from tuberculosis in a London hospital when it was bombed, but managed to crawl out of the building holding his toothbrush. Years later, as an adult, he worried about not having enough to eat and always ordered more at restaurants than anyone could consume.

He was born into Roman Catholicism, but during the war a Jehovah’s Witness came to his mother’s door and converted Diane and her two children. After adolescence, Rex left the religion and became a disciple of atheism, then agnosticism.

He was smart, curious and mischievous from a young age, and won a scholarship to attend Minchendon Grammar School.  He excelled, though he always felt he was falling short, something he attributed to his father’s emotionally abusive behavior. He nevertheless earned a place at Queens College at Cambridge University, where he experienced some of his most fulfilling years. (This was after a two-year stint in the British Navy, for which he had volunteered, he said, to “toughen” himself up.)

At Cambridge University, he was active in theater and briefly considered pursuing acting as a career. In 1956, he organized one of the first student trips from England to the University of Moscow (Russian, which he learned in the Navy, was among his several languages). He reported being approached for espionage by both the West and the East, but – in deference to his academic interests – declined all offers.

He later got a doctorate at Harvard Business School, where he met a number of like-minded colleagues in the fledgling field of decision analysis. Several of his publications, including an early textbook, are considered classics in the field. He ended up leaving academia in the 1970s to become a professional decision analyst for several consulting firms, starting in Michigan and then the D.C. area. He co-founded the company Decision Science Consortium in Reston, VA.

On the personal front, he enjoyed a number of girlfriends throughout his twenties and early 30s –and remained close friends with several of them for the rest of his life. But his goal was always to become a father, so he set about finding a wife. In 1965, his Harvard roommate introduced him to Dalia Levy, an Israeli interior designer, and within three weeks they were engaged. (Family lore has it that visa issues sped up the process.) They married three months later, and remained married for the rest of his life. He converted to Judaism so they could raise their children Jewish.

His first daughter, Michele, was born in 1962 from an earlier relationship with Gay Moran, who raised Michele in England.

His next three daughters, with his wife Dalia, were born in 1966 (Karen) and 1969 (twins Tamara and Leora.)

As much as he enjoyed and found satisfaction in his profession, nothing came close to the joy, commitment, and love he felt for his children, and later, his grandchildren. He had long wanted to raise children with an affection that would represent the opposite of how his father had raised him, and he succeeded. He could never understand why anyone would not want children, and as many as possible.

He doted on his seven grandchildren – Keenie and Shane (from Michele), Sam and Lucy (from Karen), Kobe (from Tamara), and Hazel and Jackson (from Leora.) He often said he felt incredibly lucky with his sons-in-law, including Karen’s husband Sean, Leora’s husband John, Michele’s husband Eamon, and Tamara’s partner Anthony.

He was often the center of family gatherings, singing Tom Lehrer tunes, cracking inappropriate, politically-incorrect jokes, and managing to bring his wit and generosity into every conversation. Most people adored him. He loved to challenge established opinions, to make people see the uncomfortable side of any issue (which could drive his family mad). He also liked to defend Quixotic endeavors – and remained convinced that feature-length “hologram movies” were an untapped goldmine.

He was dedicated to supporting other people’s ambitions and dreams, often using his own money, connections, or creativity to help them, and this included people he didn’t know that well. He once brought a little girl home with him from the bus stop to play with his children because she looked like she was lonely. (He also made a habit of donating to public broadcasting several times a year, because he never remembered his previous donation.)

His absentmindedness was infamous; he may be the only person who left the gas nozzle in his car as he drove away from the station…twice. He often left the house in his slippers, and once checked into a conference hotel … in the wrong city (he forgot he had a connecting flight).

His lack of self-consciousness, combined with a deep desire to learn new things, led him to a number of unconventional pursuits: he’d go to drum circles in Takoma Park and dancing at a lesbian bar in Northampton, he took guitar lessons alongside his daughters, and he could always be found dancing with his hands making odd-looking circles at any party gathering.

Although he “semi-retired” in the 1990s, he remained committed to the science of decision-making, and spent his last decades writing papers and books about how the layperson can make better decisions. When he wasn’t with his children or grandchildren, he was at his computer, writing his professional tomes. This was a common source of frustration for his wife Dalia, but she knew it was also what fed his vitality.

In 2011, he was diagnosed with pancreatic cancer – after he used his decision analysis know-how to convince his doctor to test him. He had surgery to remove the tumor, and – in a feat that amazed most doctors – went into remission. Over the next few years, he had a number of additional health issues, including several orthopedic surgeries and diabetes, but he was always able to bounce back and continue with professional work, trips with family, and many probing conversations with friends and progeny.

In late 2015, his kidneys started to fail, and after traveling to Florida to attend his daughter Leora’s wedding, he began dialysis. In early 2017, he was diagnosed with a recurrence of pancreatic cancer, and chose not to treat it. He entered hospice care at home.

Throughout this medical turmoil, he kept up regular visits to the swimming pool and weight machines, took trips out on his backyard boat, and remained fully engaged in family life. He also expressed great relief at having finally come out from under the poor self-esteem his father had instilled, and declared that he believed he was actually a pretty impressive guy.

 

Up until the final month of his life, he was putting the finishing touches on his last book, “The Art and Science of Making Up Your Mind: Decision Theory for the Everyman.” He learned a week before his death that it would be going into production.
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After he wrung every last drop out of his physical being (he lost about 75 pounds in 4 years), his irrepressible spirit left his body. He was surrounded by his family when he took his last breath.
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As he often said in his final days, “I am not too bothered about shuffling off this mortal coil. I feel quite complete. I am just sorry that, if I’m not mistaken, a number of people will miss me.”

He got that right.

 

 

 

 

 

Bears Encroach Upon Urban Backyards

Tuesday, July 2nd, 2013

Listen Here

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The mild New England winter means that more bears are up and about…..looking for food….and not just inthe woods. They’re also exploring urban backyards and residential streets. Karen Brown of New England Public Radio lives in Northampton, Massachusetts, a small town with more than its share of furry visitors. (First aired on NPR’s Morning Edition, April 6, 2012.)

To hear on the NPR website:

http://www.npr.org/2012/04/06/150079405/bears-stuffing-themselves-near-massachusetts-homes

Wednesday, June 13th, 2012

here

http://www.bostonglobe.com/lifestyle/health-wellness/2012/06/10/recognizing-delayed-ptsd-holocaust-survivors/NmVaT4wUO3GZj0czLYab0L/story.html

Primetime

Thursday, February 10th, 2011

download here

Conversations on Adolescent Health – Interview Project

Saturday, October 2nd, 2010

I was hired in 2009 by a national, government-funded collaborative — Partners in Program Planning for Adolescent Health (PIPPAH) — to conduct a series of interviews with leaders in the field of adolescent health. The theme revolved around the unique health and mental health needs that emerge during that tumultuous window of development between ages 13 and 20. The result was a series of print articles and audio podcasts, published by the collaborative, called “Creating Healthy Opportunities: Conversations with Adolescent Health Experts.”

You can visit the PIPPAH website, hear the podcasts, and download the report here

Or download the .pdf directly here

“Biological Insurance for your Baby: Banking Umbilical Cord Blood” (Washington Post)

Sunday, September 10th, 2000

The Washington Post – HEALTH SECTION

‘Biological Insurance’ for Your Baby; Experts Debate the Value and Ethics of Banking Umbilical Cord Blood to Collect Stem Cells

[FINAL Edition]

Author:                Karen D. Brown

Date:     Sep 12, 2000

Start Page:          Z.12

Section:                HEALTH TAB

Text Word Count:            2276

Lori Lange was pregnant with her first child when she started browsing the Internet for deals on strollers and bassinets. Instead, she came across information about a baby accessory that caught her by surprise: her own child’s umbilical cord blood.

Traditionally, the placenta and umbilical cord have been thrown away at birth as medical waste. But new research shows that blood from the afterbirth, like bone marrow, is rich in valuable stem cells, which can be transplanted to cure life-threatening diseases.

Stem cells in the umbilical cord are so immature they can become any blood components–red cells, white cells or platelets–and replace damaged ones. The most common diseases treated with these procedures are myelogenous leukemia, sickle cell anemia, Fanconi’s anemia and some metabolic diseases and immunodeficiencies.

Armed with research promising important medical value, about 15 biotech companies have sprung up to offer families the chance to collect the blood from their baby’s umbilical cord at birth, and then freeze and store it. Many of them call it “biological insurance”– something to fall back on in case the child or a sibling develops a deadly disease treatable with the cord blood or its derivatives. The companies charge $300 to $1,500 to collect the blood and usually another $100 a year to store it.

“Once you start looking into it, it’s almost as though you can’t turn back,” Lange said. “Because if there’s a chance to save your child, you will take it.”

But there’s another option–a growing public reserve of cord blood, similar to the national bone marrow registry. Patients without a private cord blood sample can search for a genetic match among the approximately 40,000 units of donated cord blood across the world–a supply that many institutions are hoping to expand with public education.

Obstetricians are conflicted over whether to encourage parents to pay for the individual service or to donate to the public supply– which could improve the chances for survival for a larger group of people. And once they hear from their doctors, parents must make the choice.

Cord blood is winning over the transplant community. Collecting it is a far less invasive procedure than collecting bone marrow, and research suggests that cord blood is more likely to succeed in a transplant. A study published in June in the New England Journal of Medicine found that children who received cord blood from their siblings were about half as likely to reject the transplant–or develop a “graft vs. host” disease–as children who received bone marrow. Cord blood donors are also easier to find, because the genetic match does not need to be as close.

Cord blood can be retrieved for only about 15 minutes after a baby is born. After the cord is cut, an obstetrician collects a few ounces from the cord with a syringe; it’s then tested for infectious disease, frozen and stored. The blood is thawed when and if needed.

In those cases, the transplants work by transfusion; after doctors destroy the diseased bone marrow in the patient (through drug therapy and irradiation), the cord blood is dripped into the patient’s veins and circulated through the body. The stem cells make their way to the bone marrow, where they begin to rebuild the blood cells.

Cord blood transplants have generated a number of celebrated cases- -primarily among children, because their smaller size requires fewer stem cells. The first successful transplant occurred in 1988, when a 5-year-old with Fanconi’s anemia was cured by a stem cell transplant from his newborn sister’s cord blood. In 1993, an infant with acute lymphoblastic leukemia received one of the first cord blood transplants from a nonrelative, and is now a healthy 7-year-old. Last year, a Westminster, Md., boy with Fanconi’s anemia received a transplant from his newborn sister after his family banked her cord blood privately; he is now considered free of disease. And a 35-year- old woman from Paris is on tour internationally to talk about her successful transplant five years ago to cure her chronic myelogenous leukemia.

But as crucial as cord blood transplants are for those who have had them, it’s hardly a common procedure. Most oncologists consider stem cell transplants only after all other treatments, including chemotherapy, have been exhausted. Since the first success story, only about 1,500 people worldwide have had cord blood transplants– but many more are preparing for the possibility.

Lori Lange had no reason to think her child would ever need a stem cell transplant; blood disease does not run in her family. But she knew a child’s future health is never guaranteed. She talked with three companies and settled on a Boston-based company, Viacord, after watching the firm’s sales video.

“Remember, the umbilical cord is your baby’s lifeline during pregnancy,” the video said. “Now, it could potentially be your family’s lifeline.”

Lange asked her in-laws for the $1,500 collection fee as a baby shower gift; she pays the annual storage cost. While her son Nicholas, now 2, is thriving and healthy, she says she’ll also bank the blood of her next child.

“If something ever happened, and say, your child did come down with leukemia, and you had said, ‘No, I’m not going to spend this money to save this blood for him,’ I don’t think you could ever forgive yourself,” Lange said.

Viacord officials consider such peace of mind the mark of a satisfied customer, but many medical professionals worry that parents are being coerced through guilt into buying something they have only a remote possibility of needing–or using successfully.

The Cord Blood Registry of San Bruno, Calif., which bills itself as the largest private cord blood bank in the country, has stored 18,000 cord blood units and only used 10 of them in transplants– each for a family with a previously known history of disease that can be treated with transplants. Viacord has banked 4,000 units and only used five –all for families with a sibling who was already sick.

In almost every case in the United States where a family was caught by surprise by a deadly disease and a transplant was needed, a cord blood match was found at a public blood bank, such as those housed at Georgetown University Medical Center, the New York Blood Center, UCLA or Duke University.

That’s one reason several major medical organizations, as well as many researchers, recommend against spending the money to bank your own baby’s cord blood.

“We need a lot more information before I would recommend to a patient, who has limited funds, who has their own anxieties about a pregnancy, before I tell this couple you need to spend a couple of thousand dollars for something that may never be used,” said Lucy Bayer, an obstetrician conducting a long-term study on the viability of stem cells at Bay State Medical Center in Springfield, Mass.

The American College of Obstetricians and Gynecologists writes that “parents should not be sold this service without a realistic assessment of the likely return on their investment–parents and grandparents should not be made to feel guilty if they are not eager or able to invest these considerable sums in such a highly speculative venture.”

According to the American Academy of Pediatrics, “private storage of cord blood as biological insurance is ‘unwise’–families may be vulnerable to emotional marketing at the time of birth of a child.”

Researchers at the National Institutes of Health (NIH), which has funded a $30 million national study of cord blood transplants, are skeptical of private cord blood banking.

“I would not be spending money myself on private cord [blood] banking if I were to have a baby,” said LeeAnn Jensen, an immunologist who is overseeing NIH’s cord blood study. “We don’t know of any reason why you should do it.”

But industry officials say people buy insurance for all sorts of remote possibilities.

“What are the odds my house will burn down? . . . What are the odds I’ll get in a car accident and I’ll need my air bag?” said Stephen Grant, spokesman for the Cord Blood Registry. “They all vary. The issue is, you’re doing all these things just in case.”

Still, researchers say, the consumer doesn’t realize all the unknowns of cord blood banking–for instance, how long stem cells will last in suspension. The oldest sample of frozen cord blood is seven years old. And Bayer’s research has shown that many cells die in the freezing or thawing process. “We don’t know if these stem cells will be viable 10 years down the line,” said Bayer, “and in the meantime, you’ve spent a lot of money paying for these cells to be suspended and frozen, and who’s held liable if it doesn’t work?”

The Food and Drug Administration is working on guidelines for cord blood collection. Given the room for error, Jensen says, many doctors who perform stem cell transplants are wary of working with private banks. “They switch babies at birth; they can switch cord blood units in the lab.”

The clincher for Jensen is the scientific case against using your own blood in a transplant–also known as an “autologous” donation: Recent studies at the New York Blood Center show that getting cord blood from unrelated donors may be just as good as, and in some cases better than, receiving one’s own blood back.

“If somebody has a genetic disease, it is present in their bone marrow or cord blood,” said Pablo Rubenstein, head of the immunogenetics laboratory at the New York Blood Center. “It’s giving them the same diseased genetic system.”

Rubenstein recommends private blood banking only for families who have one child with a genetic disease and another baby on the way. In those cases, the cord blood from the newborn might be a good match for the older sibling.

Commercial banks, however, stand to lose about 90 percent of their clientele with that approach. And Grant says there are still plenty of diseases contracted later in life that could be treated with autologous transplants.

Although blood banks are trying to increase the public supply through education, many have had trouble financing cord blood collection.

Biotech entrepreneurs say that with 4 million births in the United States every year, there’s no reason public and private supplies can’t exist simultaneously. “This is about having a choice–if the cord blood were donated, you can’t guarantee it would be there for you from a public bank,” said Cynthia Fisher, CEO of Viacord.

Rubenstein says public blood banks would be happy to return a cord blood sample to a particular family, should they later need it, but he acknowledges that that blood may be gone.

All parties agree that the future of cord blood is promising. Scientists are experimenting with cord blood for treating everything from breast cancer to spinal cord injuries.

Medical ethicists worry about consumer protections in such a speculative and emotional industry. “Almost everyone will pay literally everything they have to either get cured, or at least have the hope they’re going to live longer,” said George Annas, head of Boston University’s health law department. “And you can multiply that by infinity when you ask parents how much would you pay to let your child live a healthier life.”

Last year, Annas criticized the commercialization of cord blood in the New England Journal of Medicine. He also wrote that it muddies the relationship between patients and obstetricians, who might have a business alliance with cord blood companies.

That alliance varies from company to company. Viacord officials, for instance, say they have no formal relationship with hospitals, although they do send maternity wards literature and videos and offer to train doctors in cord blood collection.

The Cord Blood Registry admits to closer ties. Grant says that his company has “partnership agreements” with about 40 hospitals, including the Greater Baltimore Medical Center, in which the company offers to cover some costs and give discounts for its service at that hospital.

Columbia Hospital for Women in Washington went through the process of becoming a Cord Bank Registry partner but pulled out at the last minute after its medical staff objected, according to hospital spokeswoman Tamara Ward.

The Cord Bank Registry also has a “preferred provider” network. Network doctors are obliged to have all their patients sign a “consent form”–even patients who don’t want to bank their baby’s cord blood. Patients who decline have to acknowledge that they understand the value of cord blood and knowingly decline the service. The form includes the company’s toll-free phone number, but the form is not identified as company literature.

Whether or not the medical establishment approves, companies are expecting private blood storage will become a standard birthing option. Industry experts say business has doubled in the last year alone.

Lori Lange says she went into cord banking with her eyes wide open- -aware that the deal was speculative. “They’re not guaranteeing anything, except for saving and keeping the blood for you. They’re not promising that this is going to save your child’s life,” she said.

But as she plays on her living room floor with her 2-year-old, she says even a tiny bit of security is worth a lot. “We buy insurance policies, we do a lot of things, for the ‘what if,’,and this is one of those things for us,” Lange said. “I think this is just the beginning, and to save it now is something you won’t be able to do once all these new cures come out of it.”

[Illustration]

INFO-GRAPHIC; Credit: ROBERT BARKIN

Reproduced with permission of the copyright owner. Further reproduction or distribution is prohibited without permission.