The Cholesterol Buster: How Evinacumab Is Revolutionizing Treatment for a Rare Genetic Disease

In the world of cholesterol management, a new player has emerged, offering hope to those with one of the most severe forms of inherited high cholesterol.

ANGPTL3 Inhibitor HoFH Monoclonal Antibody

The Genetic Time Bomb: Understanding HoFH

Imagine having cholesterol levels so high from birth that heart attacks can strike in childhood. This is the reality for people with homozygous familial hypercholesterolemia (HoFH), an ultra-rare genetic disorder that affects approximately 1,300 people in the United States1 .

1,300

People affected in the United States

400+ mg/dL

Typical LDL-C levels in HoFH patients

Unlike the more common high cholesterol that develops later in life, HoFH is an inherited condition characterized by extremely high levels of low-density lipoprotein cholesterol (LDL-C)—often exceeding 400 mg/dL—from birth4 8 . This accelerated atherosclerosis can lead to serious cardiovascular complications as early as the teenage years without effective treatment4 .

Treatment Limitations

For decades, treatment options for HoFH have been limited. Traditional cholesterol-lowering medications like statins and PCSK9 inhibitors work by boosting the activity of LDL receptors in the liver. However, many HoFH patients have diminished or absent LDL-receptor function, rendering these treatments less effective8 . This critical gap in treatment sparked the search for a novel approach—one that would lead to the development of evinacumab.

A New Paradigm: The ANGPTL3 Inhibitor

Evinacumab (marketed as Evkeeza®) represents a breakthrough first-in-class treatment for HoFH. Approved by the U.S. Food and Drug Administration (FDA), it works through a completely different mechanism compared to traditional cholesterol medications1 8 .

How Evinacumab Works

1
Targets ANGPTL3 Protein

Evinacumab is a fully human monoclonal antibody that binds to and blocks the function of angiopoietin-like 3 (ANGPTL3), a protein that inhibits lipoprotein lipase and endothelial lipase and regulates circulating lipids1 .

2
Enhances Cholesterol Clearance

By inhibiting ANGPTL3, evinacumab enhances the clearance of VLDL remnants via remnant receptors in the liver, resulting in decreased LDL-C levels through an LDL-receptor-independent pathway8 .

3
Based on Genetic Discovery

The discovery of this novel therapeutic approach stemmed from an important observation: patients with a loss-of-function mutation of the ANGPTL3 protein were found to have significantly lower levels of LDL cholesterol, triglycerides, and HDL levels, along with a reduced cardiovascular risk compared to those without the mutation8 .

The Evidence: A Landmark Clinical Trial

The approval of evinacumab was supported by compelling evidence from clinical trials demonstrating its significant cholesterol-lowering benefits in HoFH patients.

Methodology and Participant Profile

In a pivotal phase 3 trial (NCT03409744), researchers enrolled 116 patients with HoFH in a single-arm, open-label study6 . The participants had a mean age of 38.8 years, with a similar proportion of male and female patients6 .

Trial Participants

116 patients with HoFH enrolled in the phase 3 trial

Treatment Protocol

15 mg/kg every 4 weeks intravenous evinacumab alongside optimized lipid-lowering therapy

Remarkable Results: Cholesterol Reduction

The trial results demonstrated substantial and sustained LDL-C reduction with evinacumab. At Week 96 of the study, patients experienced remarkable improvements in their cholesterol levels6 :

LDL-C Percentage Reduction from Baseline to Week 96

38.0%

Overall Reduction

57.6%

Patients <18 years

48.8%

Female patients

30.5%

Male patients

These reductions were observed regardless of age, sex, LDL receptor genotype, or background lipid-lowering therapy, highlighting the consistent efficacy of evinacumab across different patient profiles6 .

The Italian cohort of the ELIPSE HoFH study further reinforced these findings, showing an impressive 84.5% decrease in median LDL cholesterol—from 323 mg/dL to 50.0 mg/dL—with levels remaining stable through five years of follow-up7 9 .

Real-World Impact and Safety Profile

Beyond clinical trials, real-world evidence has confirmed evinacumab's effectiveness in everyday practice. A 2025 multicenter study published in Arteriosclerosis, Thrombosis, and Vascular Biology evaluated evinacumab in 24 patients with HoFH across six US academic medical centers2 .

53%

Average LDL-C reduction in real-world study

Consistent with clinical trial results

The study found that evinacumab lowered LDL-C by approximately 53%—consistent with clinical trial results—and was generally well tolerated2 . Additionally, significantly more patients achieved the guideline-recommended LDL-C goal of <70 mg/dL after adding evinacumab to their treatment regimen2 .

Safety and Tolerability

Like all medications, evinacumab has potential side effects. The most common adverse reactions include1 4 :

Nasopharyngitis

Common cold symptoms

Influenza-like illness

Fever, chills, muscle aches

Dizziness

Lightheadedness

Rhinorrhea

Runny nose

Nausea

Feeling of sickness with urge to vomit

Fatigue

Tiredness or weakness

Important Safety Note: In one long-term study, 23.3% of side effects were mild, 41.4% were moderate, and researchers determined that 91% of reported side effects were not related to evinacumab use5 . However, evinacumab can cause serious hypersensitivity reactions, including anaphylaxis, and requires careful monitoring during infusion8 .

Expanding Access: Hope for Younger Patients

In a significant recent development, the FDA approved evinacumab for children with HoFH as young as 1 year old in September 20251 . This approval extended the medication's indication to younger patients, building on earlier approvals for those aged 12 years and older (2021) and children aged 5 to 11 years (2023)3 4 .

2021
Initial FDA Approval

Evinacumab approved for patients aged 12 years and older with HoFH.

2023
Pediatric Expansion

Approval extended to children aged 5 to 11 years with HoFH.

2025
Youngest Patients Included

FDA approval expanded to include children with HoFH as young as 1 year old.

The expanded indication was supported by data from six children with HoFH who participated in either the U.S. expanded access program or ex-U.S. compassionate use program for Evkeeza1 . Among these very young patients, no new safety concerns were identified, and they showed similarly robust reductions in LDL-C as older patients, demonstrating continued efficacy across age groups4 .

"This development underscores the importance of, and urgency needed in, identifying children with FH through pediatric screenings in accordance with guidelines," emphasized one expert4 .

The Future of Cholesterol Management

Evinacumab represents more than just a new medication—it signifies a paradigm shift in how we approach cholesterol management. By targeting ANGPTL3 rather than LDL receptors, it opens up new possibilities for treating severe forms of hypercholesterolemia that were previously considered difficult to manage.

Ongoing Research

Research on evinacumab's potential applications continues, including studies in children under 1 year of age and investigations for managing refractory familial and nonfamilial hypercholesterolemia and severe hypertriglyceridemia4 8 .

Broader Implications

As we look to the future, this breakthrough therapy offers hope not only for those with ultra-rare HoFH but also for advancing our understanding of cholesterol metabolism more broadly.

A Revolutionary Treatment

With its unique mechanism of action and proven efficacy, evinacumab has truly earned its title as a revolutionary "cholesterol buster" in the medical community.

References