Preven&ng(Folic(Acid(Preventable( SpinaBifidaand(Anencephaly · PDF...
Transcript of Preven&ng(Folic(Acid(Preventable( SpinaBifidaand(Anencephaly · PDF...
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Preven&ng Folic Acid Preventable Spina Bifida and Anencephaly—
25 Years On
Interna'onal Federa'on for Spina Bifida and Hydrocephalus 27th Conference, Turning Points, Ghent, Belgium
2016
Godfrey Oakley, Jr. MD Rollins School of Public Health Emory University
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Lyall Thurston • I dedicate my talk to him • New Zealand, parent champion par
excellence for care AND preven&on • Prime reason flour for&fied in
Australia • Prime Minister in New Zealand
prohibits implementa&on of regula&ons for for&fica&on
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Overview
• Good News! – Preven&ng 35,000 (15%) children from folic acid preventable spina bifida and anencephaly—350,000 in last 10 years
• Bad News!
– 200,000 children each year (20 &mes the number of thalidomide babies) are born with folic acid preventable spina bifida and anencephaly—2,000,000 last 10 years
• Opportunity
– We know how to prevent all folic acid preventable spina bifida and should do it as fast as we can.
– I look forward to working with you all to get full preven&on done
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Turning Point: 1991
• June 24, 1991, 5 p. m.
• Boca Raton, Florida
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We Can ACHIEVE total prevention of SBA F Globally!
• Evidence-‐based interven&on • Reliable • Inexpensive • Cost-‐Effec&ve • Safe • Sustainable
Preven&ng SBA F can reduce infant mortality by 5% to 10%
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FDA Requires Folic Acid For&fica&on
• Required by Jan 1, 1998—6.5 years ager the science
• Immediate increase in blood folates • Immediate reduc&on in spina bifida and anencephaly to non folic acid preventable rate of 1 in 2000 births
• Immediate preven&on of folate deficiency anemia
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Good News • We do not need any more research to prevent most of
spina bifida in the world • Folate deficiency -‐ main cause of spina bifida • Not mul&-‐factorial: known causes—folate deficiency,
valproic acid, maternal diabetes, arsenic (?), and unknown causes
• Unknown and other causes small propor&on compared just
to folate deficiency caused spina bifida • We can prevent ALL folic acid preventable spina bifida by
mandatory folic acid for&fica&on!!!
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For&fica&on Saves Money
• 20 to 150 US dollars saved in health care costs for every US dollar spent on for&fica&on
• Money SAVED by for&fica&on can be used to:
– Improve care for children with spina bifida – Sustain, regulate, monitor for&fica&on – Fund more costly preven&on programs where needed such as supplements
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Bad News • 200,000 each year in over 100 countries have folic acid preventable spina bifida and anencephaly because their government does not require folic acid for&fica&on
• Each year 20 &mes as many children affected as were in all years damaged by thalidomide
• Last 10 years 2,000,000 children worldwide have been unnecessarily affected by folic acid preventable spina bifida or anencephaly
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Why Does No Country in Europe Require Folic Acid For&fica&on?
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Mandatory Folic Acid For&fica&on is Safe!
• Mandatory folic acid for&fica&on adds less than the Recommended Daily Allowance (RDA) of folic acid (~140 compared to 400 mcg/day)
• It is perfectly safe!
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Spina Bifida Preven&on Program
• Shared goal to triple preven&on over 6 years • IF, Center for Spina Bifida Preven&on, Food For&fica&on Ini&a&ve, Taskforce on Global Health, Helen Keller-‐Interna&onal, Project Health Children collabora&ng
• Seeking adequate funding from MacArthur Founda&on Project 100&Change and others
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Spina Bifida Preven&on Program • Harness power of parents and professional to get mandatory for&fica&on
• Assist industry and governments to implement, regulate, and monitor progress towards total preven&on
• Implement blood folate studies of women of reproduc&ve age for rapid evalua&on of for&fica&on programs
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IF Global Preven&on Ini&a&ve
• Wonderful!! • Create awareness of the need to prevent folic acid preventable spina bifida
• Parents and professional are powerful advocates globally and within each country
• Spina Bifida Preven&on Project will assist as resources become available
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Making Spina Bifida and Anencephaly More Visible
• Point out that folate deficiency is causing and has caused major epidemics of spina bifida and anencephaly
• Boston in 1930s • China now • Newfoundland before Canadian for&fica&on
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Unrecognized Epidemic of Spina Bifida and Anencephaly
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China Folic Acid Community Intervention (Good Compliance)
Intervention = 400 mcg folic acid supplement daily
0.0
1.0
2.0
3.0
4.0
5.0
Northern China Southern China
40%
Prev
alen
ce R
ate/
1000
birt
hs
85%
No Pills Pills
Intervention = 400 mcg folic acid supplement daily
Berry et al. (1999) 341:1485-1490
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5
10
15
20
25
30
35
40
45
50
45.6
27.2
17.7
11.3 15.4
9.6 13.9
48.0
10.0 11.2 9.0 7.0 6.3
10.1 7.6 7.6
12.6 9.7 5.8 9.3 6.7 6.0 7.5
9.7 10.6
17.0
NTD prevalence rates (per 1000 births) before and ager for&fica&on compared to China Community Trial of 400 mcg folic acid daily
Canada
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Making Spina Bifida and Anencephaly More Visible
• Show percent prevented by for&fica&on is higher, the larger the epidemic
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We Know the Rate of Non Folic Acid Preventable-‐Spina Bifida and Anencephaly
• 0.5 per 1000 births
• 1 in 2000 births • 5 per 10,000 births
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Non-‐Preventable Rate
• China supplement study • Post for&fica&on United States and Canada • Post for&fica&on case control studies no longer show protec&ve effect of folic acid supplements because for&fica&on is fully protec&ve
• Modeling of spina bifida and anencephaly rates as a func&on of maternal red blood cell folate
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WHO Blood Folate Concentra&on
Surveillance Tools
Blood folate insufficiency, not deficiency, is the relevant measure for neural tube defect prevention
Folate deficiency
Folate insufficiency
http://www.who.int/nutrition/publications/guidelines/optimalserum_rbc_womenrep_tubedefects/en/
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Epidemics of SBA F
0
1
2
3
4
5
6
10 X Epidemic 5 X Epidemic No Epidemic
NO SBA F SBA F1935 Boston 2014 North China 2014 India
1968 Atlanta 2014 Ukraine 2014 Africa 2014 USA/Canada
(mandatory fortification 150 mcg per day) China study (400 mcg folic acid per day)
Pre
vale
nce
per 1
000
Birt
hs
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Reduc&ons in the epidemic levels of SBA F through folic acid interven&ons
Pre
vale
nce
per 1
000
Birt
hs
90% Reduction
80% Reduction
50% Reduction
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Overview • Good News!
– Preven&ng 35,000 (15%) children from folic acid preventable spina bifida and anencephaly—350,000 in last 10 years
• Bad News! – 200,000 children each year s&ll are born with folic acid preventable spina bifida and anencephaly—20 &mes thalidomide damaged babies each year and 2,000,000 last 10 years
• Opportunity – We know how to prevent all folic acid preventable spina bifida and should do it as fast as we can.
– I look forward to working with you all to get full preven&on done soon!!!
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The End
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0%
20%
40%
60%
80%
100%
0 2 4 6 8 10 12 14 16 18 20 22 24
Perc
enta
ge o
f cou
ntrie
s th
at h
ave
uni
vers
ally
intr
oduc
ed v
acci
ne
Years since first introduction
Hib High-income country Hib Low-income country
PCV High-income country PCV Low-income country
PCV UPTAKE FASTEST EVER IN LOW Income countries
Source: IVAC/JHSPH – VIMS Report Dec. 2013
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Why Preven&on Not a Priority
• Role of spina bifida and anencephaly vastly under es&mated by Global Burden of Disease reports
• Role of spina bifida and anencephaly as a cause of child death and disability not appreciated by poten&al funders
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Importance of folic acid preventable spina bifida and anencephaly not
understood
• Each year 20 &mes as many children affected as were in all years damaged by thalidomide.
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Why Can’t We Prevent as Well as the Vaccine People?
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Nutri&on Regulators Must Be Led to Mandatory Folic Acid For&fica&on
• Nutri&on regulators all over the world and especially in Europe fail by not requiring folic acid for&fica&on
• Parents and health professionals are very effec&ve at convincing regulators to do what they should already have done.
• Preven&on helps parents and professional by freeing up resources to care for those with spina bifida
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Importance of spina bifida and anencephaly not understood
• Is a major cause of child mortality and not recognized by founda&ons giving money to prevent child death
• In India about 10% of child mortali&es caused by folic acid preventable spina bifida and anencephaly
• Globally about as many affected children as there were children who had polio
• Each year 20 &mes as many children affected as were in all years damaged by thalidomide.
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Folate Deficiency Main Cause of Spina Bifida
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Epidemics
• Major clue that the primary cause was environmental rather than gene&c
• Major epidemics con&nue today
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Major limitations to global SBA F prevention
• Lack of a taskforce with the purposeful goal of total prevention of SBA F
• Researchers underestimate pregnancies affected
by SBA F and the role of SBA F in child mortality
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Boston and Providence
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1:12 Chile 1:30 South Africa
1:20-‐150 USA
Flour for'fica'on with folic acid has a high cost:benefit ra'o for preven'ng
spina bifida
Llanos 2007, Sayed 2008. Grosse 2005, Grosse 2016
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Good News
• 35,000 folic acid preventable spina bifida and anencephaly prevented yearly by mandatory folic acid for&fica&on
• 350,000 children born without spina bifida or folic acid over the last 10 years
• Wonderful news for parents who are unaware of how this preven&on changed their lives
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0
5
10
15
20
25
30
35
40
45
50
45.6
27.2
17.7
11.3 15.4
9.6 13.9
48.0
10.0 11.2 9.0 7.0 6.3
10.1 7.6 7.6
12.6 9.7 5.8 9.3 6.7 6.0 7.5
9.7 10.6
17.0
NTD prevalence rates before and after fortification compared to China Community Trial of 400 mcg folic acid daily
Canada
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Timeline: Folic Acid and SBA Year Event 1935 American epidemic of SBA—5 per 1000 births or 50
per 10,000 1991 Folic acid proven to prevent SBA F: UK MRC study
1991 USA high-risk recommendation
1992 USA population recommendation
1996 USA regulations permitted and then required by January 1, 1998, mandatory folic acid fortification of “enriched cereal grain products”
1998 USA successfully implementation of mandatory folic acid fortification
2014 Non folic-preventable spina bifida and anencephaly determined to be 0.5 per 1000 births or 5 per 10,000—90% reduction
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Mandatory folic acid fortification in Australia
• In 2009, folic acid and iodine were included in the fortification mandate in Australia
• In 2016, post-fortification prevalence of
neural tube defects decreased by: - 14.4% (overall) - 55.0% (teenagers) - 74.0% (Aboriginal and Torres-Strait Islander Women)
Source: http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=60129555568
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0
5
10
15
20
25
1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991
Case
s pe
r 100
000
United States: Incidence of Hib meningitis in children <5 yrs—1980-1991
Adams WG, JAMA 1993
Conj vax 18 mo
Conj vax 2 mo
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Mandatory Folic Acid Fortification is Safe!
• Mandatory folic acid fortification adds less than the Recommended Daily Allowance (RDA) of folic acid (~140 mcg/day)
• It is perfectly safe!
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WHO Blood Folate Concentration
Surveillance Tools
Blood folate insufficiency, not deficiency, is the relevant measure for neural tube defect prevention
Folate deficiency
Folate insufficiency
http://www.who.int/nutrition/publications/guidelines/optimalserum_rbc_womenrep_tubedefects/en/
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Making Spina Bifida and Anencephaly More Visible
• Provide data that accurately shows role mandatory folic acid for&fica&on in preven&ng child deaths: – India
• 100,000 deaths a year • 8 per cent of child deaths • Saves money, too