Reducing the Burden of Familial Hypercholesterolemia
Healthcare systems around the world have failed to rescue individuals born with Familial Hypercholesterolemia (FH), even though we have had life-saving therapies for the last 34 years. Without the societal commitment to screen, diagnose, and manage FH, the opportunity to prevent heart disease and stroke for an entire generation has been lost.
In planning for our 2018 FH Global Summit, the Family Heart Foundation brought together the original authors of the groundbreaking World Health Organization (WHO) Report on Familial Hypercholesterolemia to honor them, take stock of the progress, and reinvigorate our global efforts to address FH as a public health priority. In the two years that followed, the Family Heart Foundation and the World Heart Federation partnered to convene more than 40 patient advocacy organizations and thought leaders from around the world. Together, we reissued an emphatic call to close the gaps in identification and care of this common cause of preventable premature death and disease – the FH Global Call to Action.
We’re renewing our call to action today, and everyday, until there are substantial efforts by public health officials, health systems, and the medical community to assure that families carrying the FH gene have the chance to understand their condition and have access to care. To drive these changes, the Family Heart Foundation continues to do important research to illuminate the gaps in care and the human and societal costs of avoidable premature cardiovascular disease.
In the past 20 years, progress in addressing and treating FH has been grossly insufficient, considering the magnitude of the suffering it inflicts. But the opportunity to make an impact now is greater than ever with the continued introduction of additional therapies and the dramatic increase in affordable genetic testing.
How to Fight FH – A Global Call to Action
Familial Hypercholesterolemia (FH) is under-diagnosed and under-treated.
To address the root causes contributing to poor diagnosis and inadequate care of FH, the Global Call to Action highlights 9 priorities.
- Awareness in educational institutions, the medical community, the healthcare delivery system, and the general public
- Advocacy by partnerships of patients, physicians, and other healthcare professionals
- Screening, testing, and diagnosis performed according to country-specific conditions and guidelines
- Treatment for FH, made more available, affordable, and patient-centered
- Separate guidelines for severe and homozygous FH, which merit special consideration
- Family-based care with opportunities for greater patient involvement and agency, including shared decision-making
- Registries for research to qualify current practices and identify gaps between guidelines and healthcare delivery
- Research - scientific, genetic, epidemiologic, clinical, and beyond - to improve FH care
- Cost and value for families and society, including productivity and quality of life, better quantified and understood
Join the global FH community and change the fate of FH families:
- Read and share our report and global call to action
- Share FH resources with your friends and family
- Join our online discussion groups for support
- Share your story with the Family Heart Foundation
- Volunteer your time and compassion
- Make a donation to support our efforts
Today, FH can be a story of hope for families with a history of heart disease and stroke. Simple identification and appropriate medical management can give every person the chance for a longer, healthier life.
Katherine A. Wilemon
the Family Heart Foundation
Founder & CEO