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 MedicineLederer@cing.ac.cy

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

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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