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News: FHSC

Improving FH care: the role of patient advocacy - A report from the EAS FH Studies Collaboration

Friday 30 August 2019   (0 Comments)
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Premature cardiovascular complications which characterise untreated FH are a consequence of cumulative exposure to high levels of low-density lipoprotein cholesterol.1 If, however, individuals with FH are identified early, ideally when they are children, effective treatment can be initiated early, with improvement in outcome and quality of life.2 Despite this, worldwide fewer than 5% of individuals with FH are identified.1 This urgent unmet need prompted the EAS to take the lead in initiating the FHSC Registry, a global initiative, currently involving 86 lead investigators in 68 countries. Ultimately, the FHSC Registry working together with FH Europe, the International Atherosclerosis Society and the World Heart Federation, aims to establish a global policy for universal screening for FH. Patient advocacy is key to driving forward change.

FH advocacy: the key to improving FH recognition and care

Preceding the opening of the EAS Maastricht Congress, patient organisation representatives from FH Europe and FHSC researchers met to discuss opportunities and challenges in setting up a patient organisation. Opening this session, Professor Kausik Ray, lead of the EAS FHSC, emphasised the key role of patient advocacy in lobbying policy makers about FH.

While recognising that issues related to setting up an FH patient organisation may differ between countries, representatives from FH Europe highlighted key approaches that have proved successful. These include the involvement of ‘FH Champions’, such as high-profile individuals who are affected by FH (either directly or via a family member) or proactive mothers of an FH child. Gabriele Hanauer-Mader (voluntary president and founder of FHchol Austria, the Austrian patient organization, and a board member of FH Europe and CholCo e.V.) commented: ‘Find a mother of an FH child with the energy to invest in FH advocacy.’ She discusses the status and challenges of setting up an FH patient organisation in this video:

* Since the meeting in Maastricht and these recordings, Austrian patient organisation representative Gabriele Hanauer-Mader has passed away. Her death on Wednesday 21 August has shocked and saddened her friends and colleagues in the FH community. She was a founding member of the FH Europe network and FH Europe Trustee for 3 years, a passionate campaigner for FH patients and a driving force in the FH community. She will be much missed.

FH Europe's Tribute to Gabriele Hanauer-Mader >>


Gabriele Hanauer-Mader, Austria*

 

Theodora Varkonyi-Weisz (co-founder and director of the Swiss FH organisation and a board member of FH Europe) underlined the importance of support from academic societies and clinicians in public awareness campaigns aimed at early detection, such as provision of point of care testing, and lobbying policymakers for this. Social media campaigns play a key role in raising public awareness:

Theodora Varkonyi-Weisz, Switzerland

All agreed that funding is a critical challenge, especially in countries where poverty is a major issue and there is much disparity in medical care. Education – not just the public but also clinicians – is another challenge. Inese Maurina (co-founder of the Latvian FH patient organisation, ParSirdi.lv and a board member of FH Europe) highlighted the value of a clinicians’ media programme, although the biggest challenge to date has been reimbursement for novel treatments such as PCSK9 inhibitors. She overviews the status of FH advocacy in Latvia:

Inese Maurina, Latvia

Dr. Meral Kayikcioglu
(Ege University, İzmir, Turkey), who is both a cardiologist and an FH patient, added that working with different patient organisations affected by genetic conditions that influence cardiovascular risk provides a unified platform to influence policymakers and improve treatment access. She discusses the issues specific to Turkey:

Dr. Meral Kayikcioglu, Turkey

Additionally, it is important to address discrimination relating to an FH diagnosis. For example, in the UK a genetic diagnosis of FH precludes individuals from the army, and therefore it is essential that sensible information about FH is provided to redress this.  

Finally, it was emphasised that patient organisations should work together. The Ibero-America FH network provides a base to develop a unified patient advocacy programme across South America.  Gabriele Hanauer-Mader added that countries with an established FH patient organisation could act as mentors for other countries; an example is ‘advocacy coaching’ of Argentina, currently in the process of setting up a patient organisation.

FHSC Registry

EAS Congress Maastricht provided important networking opportunities for FHSC National Lead investigators. Here they share views on the status of FH care and ongoing challenges in their countries to the roving EAS Congress reporter.

FHSC Lead Investigator Denmark Professor Børge Nordestgaard (Herlev and Gentofte Hospital, Copenhagen University Hospital, University of Copenhagen):


Professor B
ørge Nordestgaard, Denmark

FHSC Lead Investigator Israel Dr. Ronen Durst (Hadassah Hebrew University Medical Center, Jerusalem):


Dr. Ronen Durst, Israel

FHSC Lead Investigator Kyrgyzstan Professor Erkin Mirrakhimov (Kyrgyz State Medical Academy):

Professor Erkin Mirrakhimov, Kyrgyzstan

FHSC Lead Investigator Malta Dr. Myra Tilney (Mater Dei Hospital, University of Malta):



Dr. Myra Tilney, Malta


FHSC Lead Investigator Poland Professor Maciej Banach (Medical University of Lodz):

Professor Maciej Banach, Poland

FHSC Co-Lead Investigator Russia: Professor Marat Ezhov (Russian National Cardiology Research Center, Moscow):

Professor Marat Ezhov , Russian Federation

FHSC Lead Investigator Uzbekistan Professor Alexander Shek (Republican Specialised Center of Cardiology, Tashkent, Osyo):

Professor Alexander Shek, Uzbekistan

References

1. Nordestgaard BG, Chapman MJ, Humphries SE, et al. Familial hypercholesterolaemia is underdiagnosed and undertreated in the general population: guidance for clinicians to prevent coronary heart disease: consensus statement of the European Atherosclerosis Society. Eur Heart J 2013;34:3478-90a.

2. Wiegman A, Gidding SS, Watts GF, et al. Familial hypercholesterolaemia in children and adolescents: gaining decades of life by optimizing detection and treatment. Eur Heart J 2015;36:2425-37.

 


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