Global consortium issues call to action on familial hypercholesterolemia
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A global consortium of representatives from more than 40 countries issued a call to action to address gaps in screening and guideline-based care for patients with familial hypercholesterolemia.
The document, published in JAMA Cardiology, includes nine public policy recommendations developed during two meetings.
“We began this collaboration in 2018 to commemorate the 20th anniversary of the WHO FH report,” Katherine Wilemon, founder and CEO of the FH Foundation, one of the groups involved in producing the call to action, told Healio. “Original authors and current medical and advocacy leaders from around the world joined forces to survey and report out the current state of awareness, diagnosis and care of this high-risk population. We wanted this document to inspire a sense of urgency for how we can help the 9 out of 10 people with FH who are unaware of their diagnosis and not getting the care they need.”
The public policy recommendations include:
- There needs to be more awareness of familial hypercholesterolemia (FH) and severe hypercholesterolemia as a global public health issue among the general public, educational institutions and the medical community.
- Country- and region-specific advocacy organizations providing education and support should be established, and a country-specific toolkit for developing such organizations should be created.
- Screening for FH, preferably cascade screening, should be performed according to country-specific guidelines.
- Treatment to prevent atherosclerotic CVD in patients with FH “should be person-centered, available and affordable,” and ideally should begin in childhood.
- Separate guidelines for severe and homozygous FH should be created, and care of these patients should be guaranteed by governments.
- Family-based lifetime care plans should be implemented, with emphasis on patient involvement and shared decision-making.
- National and international FH registries should be funded to quantify practices and identify gaps between guidelines and delivery of care.
- Funding for research on the genetic and environmental factors influencing inherited lipid disorders should be provided.
- More understanding of the value of FH care is necessary. Any FH-specific health economic models developed should be flexible enough to be adapted to multiple countries.
Wilemon said in an interview that the most important messages of the document are that “we have the scientific understanding of the risk inferred by this genetic condition to this very broad population, and we have the therapies. What we see, though, is that in most cases, outside of a few countries, we have not implemented this knowledge or provided these management therapies to this population with any consistency. It has been a lost opportunity to prevent cardiovascular disease in the young.”
“The success of the concrete and actionable recommendations we issue today will depend on support from governments, which is why we are jointly addressing them as a global community now,” Jean-Luc Eiselé, CEO of the World Heart Federation, another group that helped develop the call to action, said in a press release. “Each of the partnering organizations is committed to advocating to improve and expand FH care in their countries. The Global Call to Action on FH is an unprecedented opportunity to prevent premature cardiovascular disease in future generations worldwide.” – by Erik Swain
For More Information:
Katherine Wilemon can be reached at kw@thefhfoundation.org.
Disclosures: Funding to support the two meetings in which the recommendations were developed was provided by Amgen and Sanofi/Regeneron. Wilemon is an employee of the FH Foundation. Eiselé reports he received grants from Access Accelerated, Amgen, AstraZeneca, Boehringer Ingelheim, Bristol-Myers Squibb, Edwards Lifesciences, Manulife, Medtronic, Novartis, Philips, Pfizer and Sanofi. Please see the study for the other authors’ relevant financial disclosures.
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