“The looming prospect of identity annihilation”: Powell, “Is Preventive Suicide a Rational Response.”
dementia raises a specific legal dilemma: Ibid.
The death of her father prompted Kassie to begin rethinking her decision to remain ignorant of her status: Author’s interview with Kassie Rose, August 23, 2011.
EIGHTEEN: SAFE HAVENS
The solution was hydraulic fracturing: “The Bakken Boom: An Introduction to North Dakota’s Shale Oil,” Energy Policy Research Foundation, Inc., August 3, 2011.
In 2001, less than 2 percent of North Dakota’s oil came from the Bakken; in 2011, more than 80 percent of it did: James Vlahos, “Oil Boom: North Dakota Is the Next Hub of U.S. Energy,” Popular Mechanics, June 13, 2012.
he became the best tool pusher some of the company’s men had ever seen: Author’s interview with Rikki Rice, July 2012.
From 2005 to 2011, violent crime in the Williston Basin: Sari Horwitz, “Dark Side of the Boom,” Washington Post, September 28, 2014.
The Alzheimer’s Association reports that more than 60 percent of dementia patients wander: “Three Out of Five People with Alzheimer’s Disease Will Wander,” Alzheimer’s Association of Northern California and Northern Nevada, http://www.alz.org/norcal/in_my_community_18411.asp.
Adding to the problem is the fact that Alzheimer’s patients sometimes think they are in a different time in their lives: Kirk Johnson, “More With Dementia Wander from Home,” New York Times, May 4, 2010.
At first, the home’s staff demurred: Author’s interview with Karla Hornstein.
it pained Gary to see his wild, reckless childhood buddy so changed: Author’s interview with Gary Anderson.
NINETEEN: A BIG IF
Tariot began taking off whole days: Author’s interview with Pierre Tariot, October 24, 2012.
Reiman’s and Tariot’s cognitive tests were designed to work on patients as young as thirty: Ibid.
Among them was Don Berry, the lead statistician for the MD Anderson Cancer Center at the University of Texas: Author’s interviews with Eric Reiman and Pierre Tariot, October 24, 2012.
Though the meeting was not formal or legally binding, both agencies indicated that Banner was moving in the right direction: Author’s interview with Pierre Tariot, October 24, 2012.
the Alzheimer’s Association was publicly predicting that one in eight of them would develop the disease: “Generation Alzheimer’s: The Defining Disease of the Baby Boomers,” Alzheimer’s Association, 2011.
In Colombia, Lopera was in the middle of discussions with Swiss pharmaceutical giant Novartis: Author’s interviews with Francisco Lopera and Ken Kosik, April 18, 2013.
The Colombian team wanted to work in what is known as a pre-competitive atmosphere: Ibid.
When Jonas Salk announced that he’d created a polio vaccine: Jon Cohen, Shots in the Dark: The Wayward Search for an AIDS Vaccine (New York: W. W. Norton, 2001), 88.
But years before him, a virologist named Hilary Koprowski mixed his own vaccine: Margalit Fox, “Hilary Koprowski, Who Developed First Live-Virus Polio Vaccine, Dies at 96,” New York Times, April 20, 2013.
curanderos—traditional Latin American shamans—practice alongside doctors: Author’s interview with Ken Kosik, April 18, 2013.
“We think your sons are heroes,” he said: CNN special, Filling In the Blanks.
“You cannot meet these families and not be transformed,” said Reiman: Author’s interview with Eric Reiman, October 24, 2012.
TWENTY: EVERYONE SEES THE POWER
he launched an international study: Author’s interview with John Morris, March 20, 2012.
“It’s hard on that old lady”: Author’s interview with Yancey DeMoe, September 2, 2012.
One of their rooms was filled with documents: Author’s interview with Matt Hornstein, July 2012.
When a psychiatrist interviewed Jamie about his life: Jamie DeMoe, visit to the University of Pittsburgh, September 12, 2012.
Depression is extremely common in Alzheimer’s patients: “Depression and Alzheimer’s,” Alzheimer’s and Dementia Caregiver Center, Alzheimer’s Association.
The National Institute of Mental Health established formal guidelines: Ibid.
“if you ask Jamie, he always says three”: Author’s interview with Chelsey Determan, September 2012.
As symptoms advance, Alzheimer’s patients struggle more with travel: “Traveling with Dementia,” Alzheimer’s and Dementia Caregiver Center, Alzheimer’s Association.
“You want to know why I do it?”: Author’s interview with Jamie DeMoe, September 12, 2012.
“All he ever says about Savannah is that he hopes to see her graduate”: Author’s interview with Rikki Rice, July 2012.
TWENTY-ONE: LANDSLIDE
“What’s wrong with twenty-five great years?”: Author’s interview with Reed Alexson, January 31, 2013.
She was saddened by Dawn’s death: Author’s interview with Robin Harvey, October 7, 2013.
On a late July weekend in 2004: Accounts of the accident that killed Mike Harvey taken from author’s interviews with Robin Harvey, August 30, 2012; author’s interview with Taylore Ogren, August 30, 2012; Shelley Nelson, “Event to Benefit Children Whose Father Died Trying to Save Them,” Duluth News Tribune, October 1, 2004; Shelley Nelson, “Two Drown in Attempted Rescue,” Duluth News Tribune, July 27, 2004; author’s interview with rescuer Phil Anderson, July 13, 2014.
She was furious with Leah: Author’s interview with Robin Harvey, August 30, 2012.
The psychiatrist asked Robin: Robin Harvey’s visit to the University of Pittsburgh, August 29, 2012.
Her personality was an odd mashup: Author’s interview with Colleen Miller, December 12, 2012.
“She’s got the kindest heart”: Author’s interview with Becky Vork, December 13, 2012.
“If I think about it too much”: Ibid.
TWENTY-TWO: SOMETHING TO SHOOT FOR
Some sources peg the median cost: Matthew Herper, “The Cost of Creating a New Drug Now $5 Billion, Pushing Big Pharma to Change,” Forbes, August 11, 2013.
In the early 1980s, drugmaker Parke-Davis: Ron Winslow, “The Birth of a Blockbuster: Lipitor’s Route Out of the Lab,” Wall Street Journal, January 24, 2000; Andrew Jack, “The Fall of the World’s Best-Selling Drug,” Financial Times, November 28, 2009.
But as additional studies began to back up the tau theory, suggesting it was the primary driver, drug development was following suit: Cynthia Fox, “Tau Is the Main Culprit in Alzheimer’s, Say Two Studies,” Drug Discovery & Development, April 7, 2015; Jim Schnabel, “Target: Tau,” the Dana Foundation, September 23, 2014.
as was the push to image tau proteins the way PiB imaged amyloid: Author’s interview with Reisa Sperling, November 5, 2013.
Some scientists, including Eric Reiman: Author’s interview with Eric Reiman, October 2012.
From 1998 to 2011, a whopping 101 Alzheimer’s treatments had failed to reach patients: “From Setbacks to Stepping Stones: Alzheimer’s Disease,” The Pharmaceutical Research and Manufacturers of America press release, September 13, 2012.
one that delayed onset by even five years would be considered a major victory: Author’s interview with Eric Reiman, October 2012.
A 2015 report compiled by the Dementia Forum of the World Innovation Summit for Health: Ellis Rubinstein et al., “A Call to Action: The Global Response to Dementia Through Policy Innovation,” report of the WISH Dementia Forum 2015.
The committee charged with selecting drugs: The selection of DIAN’s trial drugs and the study protocol came from several sources, including: Gabrielle Strobel, “2012 DIAN Series,” Alzheimer’s Research Forum; “Dominantly Inherited Alzheimer Network Trial: An Opportunity to Prevent Dementia. A Study of Potential Disease Modifying Treatments in Individuals at Risk for or with a Type of Early Onset Alzheimer’s Disease Caused by a Genetic Mutation,” description of the study’s outcome measures, ClinicalTrials.gov, a service of the US Natio
nal Institutes of Health; author’s interview with Randy Bateman, June 17, 2013.
But data analysis from those trials suggested that it slowed: Results on solanezumab drawn from Gwyneth Dickey Zakaib, “Phase 3 Solanezumab Trials ‘Fail’—Is There a Silver Lining?” Alzheimer’s Research Forum, August 24, 2012; Charlotte Jago: “Alzheimer’s Disease: One Year Later,” Life Sciences Connect, February 3, 2014.
In cases like Dawn’s daughters, Alayna and Leah, determining their mother’s age of onset was difficult: Visit of Leah Klobucher and Alayna Alexson to the University of Pittsburgh, January 2, 2013.
In Oklahoma, forty-two-year-old Sherry DeMoe Pickard: Author’s interview with Sherry Pickard, April 8, 2014.
“There’s times when I think, ‘I can’t do this again’ ”: Author’s interview with Sharon DeMoe, December 3, 2012.
TWENTY-THREE: THE SILVER TSUNAMI
For example, it successfully debunked the myth that ginkgo biloba: Elaine Woo, “Dr. Leon Thal, 62, UC San Diego Alzheimer’s Expert Killed in Crash,” Los Angeles Times, Februrary 8, 2007; for further information on ginkgo biloba’s lack of effect on cognitive decline, see also: Beth E. Snitz et al., “Ginkgo biloba for Preventing Cognitive Decline in Older Adults: A Randomized Trial,” Journal of the American Medical Association, December 23/30, 2009.
Solanezumab carried enough safety data to convince Reisa Sperling: Author’s interview with Reisa Sperling, November 5, 2013.
After all, some people carried amyloid in their brains, yet functioned normally: Reisa Sperling, “Can We Treat Alzheimer’s 20 Years Early?” TEDMED, video presentation published July 17, 2012.
Several reports about those concerns: Anne M. Summer, “The Silver Tsunami: One Educational Strategy for Preparing to Meet America’s Next Great Wave of Underserved,” Journal of Health Care for the Poor and Underserved, August 2007; “The Silver Tsunami,” Economist, February 4, 2010; Amy Burkholder, “Alzheimer’s and the ‘Silver Tsunami’: Is America Ready?” CBS News, December 14, 2010.
In 2013, a study published in the New England Journal of Medicine predicted: Michael D. Hurd et al., “Monetary Costs of Dementia in the United States,” New England Journal of Medicine, April 4, 2013.
They shared information with Aisen and Sperling: Author’s interview with Paul Aisen, January 15, 2016.
which affects about 2 percent of the general population: Derek Lowe, “ApoE4: Test or Not?” In the Pipeline, Science Translational Medicine, February 28, 2008; author’s interview with Eric Reiman, October 2012; author’s interview with Reisa Sperling; “2016 Alzheimer’s Disease Facts and Figures,” Alzheimer’s Association, p. 11.
Researchers initially believed carrying two copies of ApoE4 represented a 90 percent chance: Author’s interviews with Pierre Tariot, October 2012 and June 2, 2016; E. H. Corder et al., “Gene Dose of Apolipoprotein E Type 4 Allele and the Risk of Alzheimer’s Disease in Late Onset Families,” Science, August 13, 1993.
subsequent risk estimates have lowered that number to 58 to 68 percent: Due to the inherent limitations of statistical techniques, scientists typically express genetic risk in a range, according to Pierre Tariot. The most recent risk percentages associated with two copies of ApoE4 were drawn from the author’s interview with Pierre Tariot, June 2, 2016; estimates by 23andMe, a direct-to-consumer genetic testing company, and the Risk Evaluation and Education for Alzheimer’s Disease (REVEAL) Study, a multicenter trial examining the impact of genetic testing and disclosure. (For more details about REVEAL, see: Serena Chao et al., “Health Behavior Changes After Genetic Risk Assessment for Alzheimer Disease: The REVEAL Study,” Alzheimer Disease & Associated Disorders, 2008.
about the same risk that women with the BRCA1 gene mutation: Genin et al., “APOE and Alzheimer Disease: A Major Gene with Semi-Dominant Inheritance,” Molecular Psychiatry, May 10, 2011.
including actress Angelina Jolie: Angelina Jolie, “My Medical Choice,” New York Times, May 14, 2013.
roughly 30 to 45 percent: Table of risk estimates from 23andMe and the REVEAL study, ranges interpreted by Pierre Tariot. The report “2016 Alzheimer’s Disease Facts and Figures,” from the Alzheimer’s Association, p. 11, estimates that 23 percent of the general population carries one copy of the ApoE4 gene variant.
The A4 study hoped to enroll a thousand people: Author’s interview with Reisa Sperling.
To approve a medication for use in Alzheimer’s patients: Details about the FDA’s revised approach to approving drugs for Alzheimer’s Disease can be found in the following: “Guidance for Industry—Alzheimer’s Disease: Developing Drugs for the Treatment of Early Stage Disease,” US Department of Health and Human Services, Food and Drug Administration, Center for Drug Evaluation and Research (CDER), February 2013; Nicholas Kozauer and Russell Katz, “Regulatory Innovation and Drug Development for Early-Stage Alzheimer’s Disease,” New England Journal of Medicine, March 28, 2013; Gina Kolata, “F.D.A. Plans Looser Rules on Approving Alzheimer’s Drugs,” New York Times, March 13, 2013.
But a surprising answer came out of the University of California, San Francisco: Author’s interview with Paul Aisen, November 26, 2013.
The Mini Mental State Examination, known to clinicians as the MMSE: Ibid.
The first person ever dosed with PiB scored 25: William E. Klunk and Chester A. Mathis, “Whatever Happened to Pittsburgh Compound-A?” Alzheimer Disease & Associated Disorders, July–September 2008.
But the MMSE is so imperfect that even people with dementia can sometimes score a perfect 30: Author’s interview with Paul Aisen, November 26, 2013.
Julie Noonan Lawson thought the test: Author’s interview with Julie Noonan Lawson, December 5, 2012.
The FDA also agreed to make its rules more flexible, thanks in large part to the efforts of Russell “Rusty” Katz: Author’s interview with Eric Reiman and Pierre Tariot, October 2012; author’s interview with Paul Aisen, November 26, 2013.
Reisa Sperling wasn’t expecting a home run from A4: Author’s interview with Reisa Sperling.
“Amyloid pulls the trigger, but tau is the bullet”: Kay Lazar, “Researchers Seek to Short-Circuit Alzheimer’s,” Boston Globe, March 27, 2015.
To help answer those questions, they added yet another resource to their study: Author’s interview with Reisa Sperling.
For example, in November 2013, he told colleagues: Madolyn Bowman Rogers, “Do Tau Tracers Track Cognitive Decline in Disease?” Alzheimer’s Research Forum, November 27, 2013; press release from the Clinical Trials on Alzheimer’s Disease, “Tau in the Brain: A Better Predictor of Alzheimer’s Disease Progression?” November 14, 2013.
TWENTY-FOUR: THE LUCKY ONES
In the summer of 2008, twenty-three-year-old Chelsey McIntyre, Steve and Lori’s youngest, was facing the toughest dilemma of her life: Author’s interview with Chelsey McIntyre, June 7, 2012.
both her parents were adamantly opposed to any of their daughters finding out their status: Author’s interviews with Steve and Lori McIntyre.
“For right now, I’m perfectly content not knowing”: Author’s interview with Lindsey Sillerud: September 14, 2012.
Deb DeMoe, who turned so often to her faith for answers, consulted her pastor: Author’s interview with Deb DeMoe, March 16, 2012.
“It was the second or third [diagnosis] when I started to pick up that wow, this was serious”: Author’s interview with Amber Hornstein, July 2012.
“She’s always thinking about it, always talking about it”: Author’s interview with Matt Hornstein, July 2012.
“She’s never going to lighten her load”: Author’s interview with Cole Hornstein, February 13, 2014.
One night at Grandma Gail’s house in Tioga: Author’s interviews with Amber Hornstein, July 2012, and Chelsey McIntyre, June 2012.
It was then that Karla realized Sherry had the disease: Author’s interview with Karla Hornstein, January 23, 2012.
TWENTY-FIVE: FOLLOW THE SCIENCE
about fifty of the Colombian paisa
were traveling in groups to the Banner Institute: Author’s interview with Pierre Tariot, October 2012.
Eleven of the paisa already had symptoms: Details of the paisa visit to the Banner Institute were drawn from Adam S. Fleisher et al., “Florbetapir PET Analysis of Amyloid-Œí Deposition in the Presenilin 1 E280A Autosomal Dominant Alzheimer’s Disease Kindred: A Cross-Sectional Study,” Lancet, November 6, 2012.
And so it came to be that Pierre Tariot and his wife, Laura, welcomed groups of the paisa: Author’s interview with Pierre Tariot, October 2012.
In the paisa, amyloid begins increasing at the age of twenty-eight: Author’s interview with Eric Reiman, October 2012.
“This is a special population”: Ibid.
Tariot and Reiman invited fellow Alzheimer’s researchers from around the country: Author’s interview with Eric Reiman and Pierre Tariot, October 2012.
Crenezumab began its life as a molecule: Author’s interview with Andrea Pfeifer, October 21, 2013.
Carole Ho, the neurologist who oversees Genentech’s early clinical development group: Author’s interview with Carole Ho, November 13, 2013.
To Tariot, the company’s decision was nothing short of brilliant: Author’s interview with Eric Reiman and Pierre Tariot, October 2012.
they sought the advice of Jur Strobos: Ibid.
“We think we have a chance”: Author’s interview with Eric Reiman, October 2012.
On December 23, 2013, the Banner Alzheimer’s Institute announced: Press release, Banner Alzheimer’s Institute: “Alzheimer’s Prevention Initiative Marks Milestone,” December 23, 2013.
“We don’t have time to do all the research we can do”: Author’s interview with Francisco Lopera and Ken Kosik, April 18, 2013.
TWENTY-SIX: LIKE FATHER, LIKE SON
After consulting with Dean and another friend, he turned it down: Author’s interview with Monte Olsen.
He visited, but only every so often; and when he did, it ruined his day: Author’s interview with Dean DeMoe, October 13, 2015.
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