by Jasmine Patel, MPH
Reaching consensus is a challenge for any community, and the global health care community is no exception. When it comes to inherited high cholesterol, however, experts and advocates are of one mind.
During the month of September, and in the lead up to global Familial Hypercholesterolemia (FH) Awareness Day on September 24, the cardiovascular community is coalescing on the issue of FH. The most common genetic cause of high LDL cholesterol, FH impacts 34 million people worldwide. When left untreated, FH can lead to early death in the prime of life – yet 90% of people with FH are currently undiagnosed.
Earlier this year the FH community issued “A Global Call to Action,” combining the perspectives of patients, clinicians, advocacy organizations, scientific associations and public health officials. The unprecedented document represented insights and expertise from across 40 countries representing high-, middle-, and low-income regions. Inspired by the 1998 WHO recommendations on FH, the call to action paves a way forward for health care systems around the world to implement lasting policy solutions for genetically high-risk cardiovascular populations.
This month, the FH community is elevating its call to action in hopes that the scientific advancements and research gains of the last two decades can become accessible to more patients around the globe. The effort is a continuation of ongoing advocacy by organizations such as the Global Alliance for Patient Access, which advocates for patient-centered care, and FH Europe, a patient network dedicated to early identification and diagnosis of FH. For FH patients, who have lived with high cholesterol since birth, timely and optimal therapeutic access is critical. Collaboration among patient-centered organizations like these is key to amplifying priorities to policymakers.
Efforts to position FH as a global health priority are rooted in nine public policy recommendations for improving FH care:
- Awareness. Because FH is underdiagnosed and undertreated, there is a need for general awareness and recognition of this genetic condition as a public health issue.
- Advocacy. Country-specific FH advocacy organizations should be established, in partnership with patients and clinicians. These organizations act as critical stakeholders, knowledgeable champions, and conduits to providing patient support and general education.
- Screening, testing, and diagnosis. Screening for FH, through genetic or clinical testing, should be performed according to country-specific conditions and guidelines.
- Treatment. Treatment for FH should be patient centered, available and affordable. It should begin in childhood and continue over the course of life.
- Severe and homozygous FH. Separate guidelines for the severe rare form of FH, homozygous FH, should be created. Care of these patients require unique resources.
- Family-based care. Because FH impacts individuals throughout their lives, care should be organized and accessible throughout the different challenges and life stages.
- Registries. FH registries should be funded, ideally by country governments, to provide vital information on the evolving natural history of FH. This may include information on awareness, success of treatment and outcomes
- Research. FH research should continue to be funded to advance the scientific understanding of FH and to identify additional treatment options for patients
- Cost. FH care must be affordable and provide value to impacted families and society at large. It is important for countries to assess the value and cost savings of available preventive FH interventions.
This document incorporates best practices, proven country-specific solutions to gaps in care, and up-to-date treatment information. In short, it represents a critical advocacy tool for FH stakeholders.
Now, the FH community looks to those advocates to encourage the successful, country-specific implementation of these public policy recommendations. With advocacy organizations, patients and clinicians collectively engaging with government bodies, the FH community can move global consensus into global action.
Jasmine Patel, MPH, is director of policy and outreach for the Global Alliance for Patient Access.