Since its establishment seven years ago, the FH Foundation has studied the 1998 World Health Organization (WHO) Report on Familial Hypercholesterolemia (FH). The 11 recommendations within the document guide our strategic efforts to address the large gaps in diagnosis and care of FH in the United States. At the 20th anniversary of this landmark report, the FH Foundation recognized an opportunity to reexamine the original recommendations and engage the global community to discuss progress that has been made since the 1998 report and gaps in implementation that continue to exist today.
At the first Global Call to Action on Familial Hypercholesterolemia meeting on October 3, 2018, the FH Foundation convened FH experts, physicians, FH advocacy organizations, as well as, the original authors of the 1998 WHO Report on FH. The FH Foundation’s vision was to collaborate with the Global FH Network and World Heart Federation to come together as a unified community to make substantial progress towards formulating an expert consensus on methods to elevate FH as a public health priority around the globe.
Jasmine Patel, MPH, Community Relations Manager of the FH Foundation, introduced the initiative to the group and announced that the FH Foundation had successfully brought together stakeholders from 23 countries around the world to share their insights and expertise. “We have a diverse representation from low, middle, and high income regions throughout the world in this room.”
Directly following this heartfelt welcome, Dr. Børge Nordestgaard, MD, from the University of Copenhagen discussed progress made internationally to improve the diagnosis rates of FH. Currently, less than 10% of the FH population around the world has been identified, except for a few Western European countries with active FH screening programs, however we still have a long way to go.
The FH Foundation invited Dr. Gerald Watts, MD, from the University of Western Australia, Dr. Pablo Corral, MD, from FASTA University Argentina, Dr. Leiv Ose, MD, from University of Oslo, and Jules Payne from FH Europe and Heart UK to share the initiatives they are a part of that build multi-stakeholder collaboration to advance FH care in their regions.
“Last year, in partnership with the FH Foundation and the FH Iberoamericana Network, we launched Meeting of the Americas which is a survey initiative to understand the level of awareness and knowledge in physicians regarding familial hypercholesterolemia. Today, we have over 900 survey responses from countries within North, Central, and South America.” – Dr. Pablo Corral
Dr. Sam Gidding, MD, Chief Medical Officer of the FH Foundation, led a panel discussion with Muin Khoury MD PhD from the Centers for Disease Control and Prevention (CDC), Khalid Al. Rasadi, MD, from the Oman Society of Lipid and Atherosclerosis (OSLA), and Thomas Gaziano, MD, MSc, from the World Heart Federation that highlighted the role of policy and public health programs to move the needle forward for FH.
This discussion set up the meeting for the Global Call to Action on FH initiative. Stakeholders were divided into eight sections, which represented “themes” that were derived from a review of the 1997-1998 reports as well as consideration of new knowledge obtained regarding FH in the last 20 years. Topic areas included FH Diagnosis and Treatment, Awareness, National and International Policy and Public Health Programs, Family-based Care, HoFH Management, FH Registry and Research Funding, Advocacy, and Cost.
Highlights of the subgroup discussions included recognition of the increased knowledge about FH created by national and international registries and the key role national advocacy organizations for FH have played in increasing FH awareness. Both of these areas have seen significant growth over the past two decades. The plight of patients with homozygous FH, despite initiation of new therapies was also recognized.
As a result, the group agreed to develop a Global Call to Action on FH initiative because of the continued low rates of FH identification and awareness despite the presence of effective screening tools and much more effective preventive treatments. We hope today’s scientific evidence and research regarding FH will create a new set of recommendations that continue to overcome the gaps recognized in the original 1998 recommendations.
To continue these efforts, the World Heart Federation and the FH Foundation will cohost an international roundtable in Dubai at the 2018 World Congress of Cardiology. The objective of this meeting will be to present the October 3rd deliberations to additional stakeholders including advocacy leaders and international experts to build further consensus.