Potential impact of conflict on Haemoglobinopathies - Carsten W. Lederer
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Transcript of Potential impact of conflict on Haemoglobinopathies - Carsten W. Lederer
The Cyprus Institute of Neurology and Genetics
Potential Impact of Conflict on HaemoglobinopathiesCarsten W. LedererThe Cyprus Institute of Neurology and Genetics The Cyprus School of Molecular [email protected]
https://en.wikipedia.org/wiki/Damascus
UNESCO HeadquartersParis, France
30 – 31st May 2016
Human Variome Project Consortium
6th Biennial Meeting GG2020 Fringe Meeting
The Cyprus Institute of Neurology
and Genetics
Haemoglobinopathy Epidemiology and Trends
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The Cyprus Institute of Neurology
and GeneticsEpidemiology 3
WHO: Eliminating malaria: learning from the past, looking aheadModell and Darlison 2008 PMID18568278
High prevalence in traditional malaria regions
Even after malaria eradication, the inherited disease stays behind Annual birth of 330,000 babies with major haemoglobinopathies
275,000 SCD (Sub-Saharan Africa: 50 – 80% die before age 5) 55,000 Thal (Western Pacific, Eastern Mediterranean, South-East Asia)
Globally >20 Million SCD and >100,000 Thal patients
The Cyprus Institute of Neurology
and GeneticsEpidemiologic & Medical Trends 4
!
Increasing & global migration from source to sink countries New health challenges for high-income countries, e.g. USA & UK with SCD
Increasing life expectancy of patients, e.g. Thal survival rates in Italy
Piel et al. 2014 PMID 24748392 Borgna-Pignatti et al. 2004 PMID15477202
The Cyprus Institute of Neurology
and GeneticsCost in High-income Economies Concrete cost per patient
Thal, Northern Israel (2014) $63,660/a$1,971,380/lifetime
Thal, UK (1999) $20,750/a$1,245,030/lifetime
Thal, UK (2016) $14,404/a $ 720,201/lifetime
SCD, USA (2009) $16,000/a $ 460,151/lifetimeannually $1.1 billion for approx. 70,000 US SCD patients
Increasing cost to health systems over time, e.g. USA with SCD in million $
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http://www.grandviewresearch.com/industry-analysis/hemoglobinopathies-marketKoren et al. 2014 PMID24678389
Karnon et al. 1999 PMID10671989Weidlich et al. 2016 PMID27041389
Kauf et al. 2009 PMID19358302
The Cyprus Institute of Neurology
and Genetics
Impact of Conflicts on Haemoglobinopathies – The Example of Syria
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The Cyprus Institute of Neurology
and GeneticsSituation in Syria Thalassaemia baseline
8000 Thal patients (2009), estimated increase 10%/a Estimated up to 5% Thal carrier rate Without prevention programme
0.25% of pregnancies at risk 0.0625% of newborns thal patients
Impact of conflict 654 medical personnel killed (9/2015) Exodus of healthcare workers Health facilities only partially operative or closed down
57% of 113 public hospitals 51% of 1783 health centres
Aggravating factors Burden of IDPs on urban health centres 60% drop in local drug production 50% increase in drug prices
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The Cyprus Institute of Neurology
and GeneticsSituation in Syria Whole of Syria – Health Sector/Cluster People in Need
Urban areas as main foci
http://www.who.int/hac/crises/syr/sitreps/syria_health_sector_cluster_news_september2015.pdf?ua=1
The Cyprus Institute of Neurology
and GeneticsSituation in Syria Whole of Syria – Health Sector/Cluster Severity Ranking
Impacted by local accessibility and available health professionals
http://www.who.int/hac/crises/syr/sitreps/syria_health_sector_cluster_news_september2015.pdf?ua=1
The Cyprus Institute of Neurology
and GeneticsImpact on the Region
http://data.unhcr.org/syrianrefugees/regional.php
[3.5% of 75 Mio]
[26% of 4.1 Mio]
The Cyprus Institute of Neurology
and GeneticsFinancial Aid for the Region
file:///C:/Users/Lederer/Downloads/2016-05-24-UNHCRFundingUpdate-SyriaSituation-3RPandHRP.pdf
The Cyprus Institute of Neurology
and GeneticsEmigration from the Region
Aid shortfall amongst major push factors, e.g. Jordan Non-communicable chronic disease (NCD) patients without health care
2014: 23% 2015: 58%
>50% of Syrian refugee household with at least 1 NCD family member Immigrant refuge population with elevated carrier rates
Serious medical conditions as agreed criteria for UNHCR-aided resettlement
Thalassaemia success stories as advertising material for open-door policies
Hope of thalassaemia treatment as key pull factor for any affected family
http://www.unhcr.org/560523f26.htmlhttps://www.youtube.com/watch?v=HAkBmqqe16g http://www.unhcr.org/548835e59.htmlDoocy et al. 2015 PMID 26521231
The Cyprus Institute of Neurology
and GeneticsImpact on EU Sink Countries
Impact on Germany (81 Mio; 484,000 refugees) In 2014 with 500–600 thalassaemics in total Based on simplifying (and inaccurate) assumptions:
5% carrier rate with 11/2015 estimates and 1:1 gender distribution (242,000 couples) @ 1 child/couple: 150 new thalassaemia patients amongst first-borns in coming years
Based on incidence rates from Swedish study: 99 new cases/year Expected: in 5 years doubling of current thalassaemia numbers from the Syrian refugee
population alone Impact on Sweden (9.6 Mio; 107,966 refugees)
Historical incidence rates for Syrians in Sweden 20.5/100,000/year 22 new cases/year
Impact on Greece (11 Mio; 496,119 refugees) Based on incidence rates from Swedish study:102 new cases/year Indigenous national screening programme in place
Requirement of national screening programmes for major sink countries, at least for at-risk ethnic groups!
“The refugee crisis challenges national healthcare systems”Eber and Dickerhoff 2014 PMID24557998 Hemminki et al. 2015 PMID27092253Hunger 2015 PMID26964894 https://en.wikipedia.org/wiki/Refugees_of_the_Syrian_Civil_War
The Cyprus Institute of Neurology
and GeneticsRequired Action: Local disease control
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http://http://www.thalassaemia.org.cy/
Annual Number of Thalassaemic Births % of Expected
Removal of obstacles to progress ($)1. Establish working relationships with local clinicians and
educators, through or despite local authorities 2. Identify and address specific local
infrastructural and educational needs
Establishment of autonomy Disease management ($$$)
(keeping patients healthy) Disease prevention ($)
(enabling good quality of care) Education of patients ($)
Local prevention measures and treatment options Real-life service provision in potential target countries
Education of clinicians & decision makers ($) Best-practice prevention and treatment programmes
The Cyprus Institute of Neurology
and GeneticsShared Databases: Means and End
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Link between international clinicians and researchers Symbolisation of regional and global commonalities Establishment of cross-border collaboration Affordability (compared to other biomedical undertakings) Avoidance of bioethics hurdles inherent to biological samples
Critical community resource Tangible benefit for clinicians and researchers Asset to attract future collaborations and funding Deepening or widening of collaborations by
future database expansions
The Cyprus Institute of Neurology
and Genetics
This project has received funding from the European Union’s Sixth and Seventh Framework Programmes for research, technological development and demonstration under grant agreement nos. 26539 (ITHANET) and 306201 (ThalaMoSS) and from the Cypriot Government as core funding and through the Research Promotion Foundation of Cyprus.
Thank you for your attention! 16
https://en.wikipedia.org/wiki/Damascus