Brain Trust Chapters 13-15

1. Brain TrustChapters 13-15 To-Vi Nguyen

2. Chapter 13 • Vicky Rimmer- 15 yr old girl • Was in a coma within half a year • “Human Mad Cow Disease”- CJD unheard of in someone so young • 1993- BSE already killed 120,000 cows in Great Britain • Caught public’s attention

3. Ministry Embarrassment • 1995- discovery of BSE in a young cow after they announced that BSE cases would not emerge after 1988 • Tried to persuade German government to accept BSE-free cattle born after 1992 • Hid the latest cases of CJD from the public because they knew they couldn’t contain the epidemic

4. Ministry Investigation • Memo: “The cumulative prion load in an animal outside the brain was probably about equal to that in the brain” • Launched nationwide survey of slaughterhouse practices • Inspectors discovered that 309 out of 392 plants did not follow mandated procedures • Found that BSE-infected tissue was constantly being circulated back into animal feed

5. Spread of Public Knowledge • Summer 1995 • Documentary “CJD in Teenagers” • Article on a woman who prepared meat pies suffering from CJD • Cattleman with CJD – 4th case • Newspapers announced that “human mad cow diseases were all at all time high in Britain

6. Ministry Defensiveness • Oct. 1995 Ministry news flash: • “CJD is a disease in humans. The incidence of CJD in dairy farmers is no higher in Britain than in any other European countries. BSE is an animal disease” • No conciliatory statements to the public about how understandable public concern was • Nov. memo: • “Our usual line is such cases is appropriate: ‘We are aware of these cases. The necessary investigations are underway and we cannot comment further at this stage.’ ” • Do you think the public continued to put their faith in the government’s reassurances or do you think they were concerned by the media’s coverage of CJD?

7. Dr. Richard Lacey • Warned ministry of dangers of eating contaminated beef for years • Action was “too expensive” and ministry too preoccupied with protecting the cattle industry • Ministries orchestrated a campaign of deception, misinformation and manipulation of cowardly scientists • Government top class • Already infected consumer (experimental class) bottom

8. Ministry Defense • November 19, 1995 – British Ministry of Health press release • “Beef is beef is beef. Be it prime cuts, mince, burgers, pies or sausages. All play a key role in providing the nation with a healthy balanced diet. Enjoy it. Just as you have always done.” • Prime Minister John Major denied any link between BSE and CJD in front of the House of Commons

9. New variant CJD • Dr. Eileen Rubery- experienced policy maker who advised ministers in Whitehall for more than 15 years • Atypical CJD nvCJD (new variant)  VCJD • New amyloid-plaque rich type of CJD occurring in under-forty-year-olds • More “florid” plaques in the brain as well as evidence of neural degeneration in the spinal cord • Much younger than traditional CJD patients • Took longer to die

10. If the 2 new cases they were working on were confirmed CJD cases, it would prove the link between BSE and CJD • Hypothesis- “Atypical CJD is caused by the BSE agent jumping species barrier from animal products to humans via food or a parenteral (intravenous) route.” • Asked minister to wait 4-5 weeks to inform the public so she could publish her paper

11. What Took So Long? • Many young people on whom their conclusions were based on died in 1995 • Spongiform Encephalopathy Advisory Committee didn’t come out with this info until March 1996 • Someone accumulated the data and how these new cases differed from “sporadic” CJD • What took so long?

12. Rubery’s Support for Lacey • Almost 11 years passed between when Jonquil’s symptoms first became noticeable until March 1996 when the memo appeared • Memo came 4 months after chief medical officer claimed “British Beef is Perfectly Safe to Eat” • Rubery’s memo supported Lacey’s ignored predictions made over the last 5 years

13. March 1996- Health Minister Stephen Dorrell announced that there was a new CJD variant connected to BSE found in young people • Public reaction rapid and angry • Those whose loved ones developed CJD were furious at being misinformed • Livid about the deliberate cover-up to avoid tarnishing the reputation of British beef

14. More Ministry Denial • Dorrell complained that “It isn’t the cows who are mad, it’s people who are going mad, what all of us have to do is step back from the hysteria and believe the facts.” • Government tried to persuade parents of CJD victims to keep quiet • Physician investigator: “Think about the economy” • Was the government was right to try to protect the beef industry and the economy at the risk of a select few young people’s health?

15. CJD Not Decreasing • Figures from early 2004 show that vCJD annual death rate no longer decreasing • Kuru incubation periods of several decades indicate that we may be seeing just the tip of the iceberg • Rise from fewer than 10 cases in 1970 to more than 50 cases in 2002 • Can’t be spontaneous or random • CJD surveillance unit: “This may be attributed to improved case ascertainment”

16. Underrepresented • Significant number of cases are slipping through undetected • Data may be misleading or inaccurate • Highly underrepresented • Hidden in Alzheimer’s disease

17. Chapter 14 Prime Cuts • Richard Marsh- Wisconsin veterinarian, part of the US Department of Agriculture and the FDA’s committee • Committee completely dominated by meat industry, rendering industry, sheep industry, and dairy industry • Marsh warned committee they needed to stop the practice of feeding animals back to same species • Ignored and ridiculed

18. Marsh Shut Down • Large amount of meat-and-bone meal fed to American cattle • Gave data on mink outbreak caused by cattle feed • Fell on deaf ears • Cattle industry vilified Marsh • National Renderers Association said his data was “anecdotal” • Grant proposals to test more cattle continuously rejected by government

19. Collected circumstantial evidence that was overwhelming in its implications • Data belittled in favor of “maintaining the status quo” and protecting the economy • 1993 Symposium- tore him apart • Couldn’t stand up against the pressure and criticism

20. Van Smith Article • Reporter Van Smith wrote an article on a local rendering plant in 1995 • Public horrified to learn that cows rendered along with roadkill • Pets were also being rendered and fed back to their own pets as pet food • Would this be allowed to happen today? Do you think people today would feel the same outrage?

21. Oprah Winfrey segment • April 1996- Oprah Winfrey • Retired rancher Marsh Lyman declared that cows that died from sickness were rounded up, ground up, and fed to other cows • Oprah and the public outraged that “placid, docile” cows, naturally herbivores, were being forced to become not only carnivores, but cannibals

22. Forced to Amend • Cattle industry saw cattle futures plummet • Oprah forced to schedule a show the following week • Gritted out half hearted apologies • 6 years of litigation and lawsuits followed • Should Oprah have recanted the statements from her show?

23. Chapter 15 The Alzheimer’s Nightmare • Centers for Disease Control stated that only one in a million people get CJD in the US • Only 4,751 CJD deaths in the US between 1979 and 1998 • Department of Agriculture- the true measure of the transmission of prions from cattle to humans is a supposedly different disease, variant CJD • Has nothing to do with tainted beef

24. More Widespread than Previously Thought • No mandatory reporting of CJD cases in many states • “One in a million” – they have no idea how many CJD cases there are because no one has searched for them • Data gathering mostly done by volunteer who lost a loved one to CJD

25. Difficulty in Diagnosing CJD • Overlapping symptoms in CJD and Alzheimer’s • Dementia • Muscle jerking/spasm • Initial memory loss • Physicians have difficulty distinguishing between dementia cases and CJD • More familiar with Alzheimer’s

26. Diagnosing CJD • No definitive way to diagnose CJD without an autopsy • Reluctance to conduct autopsies because CJD can be passed from surgical instruments to people • Institute of Medicine of the National Academies • The only way to determine a prion disease is to examine brain tissue • At least half the estimated deaths caused by prion diseases in the US are not autopsied and confirmed • Health insurance doesn’t cover CJD

27. Misdiagnoses • 1989- Laura Manuelidis and husband Elias discovered that after examining brains, 6 our of 46 Alzheimer’s disease patients had CJD • 13% misdiagnosed • Further studies show 5.5-13% of Alzheimer’s patients actually have CJD

28. Alzheimer’s on the Rise • CDC stats- • 1979- 653 Alzheimer’s deaths in the US • 1991- 13,768 • 2002- 58,785 • Over 24 years, there’s been an 8,902% increase in deaths from Alzheimer’s disease in the US • CDC says the increase is due to improvements in diagnosis, awareness of the condition, and “other unidentified factors” • 4.5 million people in the US have Alzheimer’s and will die from it • Extrapolate the data- this figure will more than double by 2020

29. Dr. Hugh Hendrie • Professor of psychiatry at University of Indiana • Compared rates of dementia and Alzheimer’s disease between elderly people in Ibadan, Nigeria, with an equivalent group in Indianapolis, Indiana • Suggests environmental factors play a role