New lysosomal acid lipase deficiency premium fund opens

The PAN Foundation today opened a new lysosomal acid lipase deficiency premium fund, providing up to $4,700 per year to help eligible patients pay for their out-of-pocket health insurance premium costs.

Lysosomal acid lipase deficiency (LAL-D), also known as Wolman disease or cholesterol ester storage disease (CESD), is an inherited genetic condition in which the body does not produce enough lysosomal acid lipase enzyme, which is responsible for breaking down fats and cholesterol. When the LAL enzyme is missing or deficient, fats accumulate in organs and tissues throughout the body, primarily leading to liver disease and high “bad cholesterol,” which is linked to cardiovascular disease.

“We are proud to offer copay assistance and premium assistance to support people living with LAL-D, many of whom experienced symptoms by age five. This rare disease presents challenges and expenses for those affected and their loved ones, and we hope that this financial support can help ease those burdens,” said PAN Foundation President and CEO Kevin L. Hagan. “We are also proud to offer our patients support services through the American Liver Foundation, one of our valued alliance partners. Our generous network of donors makes this financial assistance possible, and we are grateful to each and every one of them.”

The American Liver Foundation offers online support groups, educational tools, and resources to learn more about a physician in your area, clinical trials, organ donation, and more. Learn more on their website, liverfoundation.org.

Patients who qualify are eligible to receive $4,700 in financial assistance to pay for their health insurance premiums. Learn more about PAN Foundation health insurance premium funds and other support we provide on our website.

Eligibility requirements 

To get premium assistance for lysosomal acid lipase deficiency, patients must:   

• Be getting treatment for lysosomal acid lipase deficiency. 
• Have health insurance that covers the qualifying medication or product.  
• Have an income that falls at or below 400 percent of the federal poverty level.  

How to apply

Patients or caregivers applying on their behalf can apply for assistance using the PAN Foundation’s online patient portal. To apply on behalf of a patient, providers can use the provider portal, while pharmacists can use the pharmacy portal. A series of how-to guides are also available for the patient portal, including common tasks like creating an account and applying for assistance online.

Other patient support services at PAN

Apply for transportation assistance

PAN grant recipients may also qualify for transportation assistance to allow them to get to and from activities that improve their overall health outcomes, including healthcare services, social connection and support, and healthy and nutritious food. Check your eligibility to learn more.

Connect with a patient support organization

PAN recognizes that people with serious health conditions—and their families and caregivers—need support beyond financial assistance. That’s why we partner with more than 25 leading patient advocacy groups to connect people to communities that can offer support with the complex physical, emotional, and practical realities of life-threatening, chronic, and rare diseases. Learn more about our partners.

About the PAN Foundation
The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic, and rare diseases with the out-of-pocket costs for their prescribed medications.  

Since 2004, we have provided nearly 1 million underinsured patients with $4 billion in financial assistance. Partnering with generous donors, healthcare providers, and pharmacies, we provide the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. Learn more at panfoundation.org.