Lupus Foundation of America and EMD Serono Launch The ALPHA Project to Improve Future of Lupus Care
Highlights of The ALPHA Project:
- Global initiative aims to identify critical gaps and solutions for people with lupus, a disease affecting 1.5 million Americans.
- Insights-driven collaboration will pave a path forward for more timely and accurate diagnosis, greater access to care and improved treatment options.
The Lupus Foundation of America and EMD Serono, the biopharmaceutical business of Merck KGaA, Darmstadt, Germany, in the US and Canada, today announced collaboration on The ALPHA Project: Addressing Lupus Pillars for Health Advancement, a global initiative to drive advancement in lupus research and care. This multi-phase initiative will seek to achieve better and timelier diagnosis, expand access to expert care, and improve treatment options for those living with this complex and unpredictable disease.
Lupus is a chronic autoimmune disease in which the body’s immune system can attack and damage skin, joints, and internal organs. The Foundation estimates that 1.5 million Americans have a form of lupus and as many as 16,000 new cases are reported each year. In addition, lupus impacts at least 5 million people worldwide.
“Lupus is a highly complex and debilitating disease that has no cures. It is our hope that this project will lead to consensus positions and research directions agreed to by the international experts in lupus,” said Sandra C. Raymond, CEO of the Lupus Foundation of America.
“We are pleased to collaborate with EMD Serono on this important work that will translate science into new treatments and better tools to manage lupus with an eye directly on helping the patient as soon as possible.”
Building Consensus on Priority Research Directions Will Accelerate Cures
Many unknowns remain about how to best care for people affected. The impact of lupus varies by individual, making it difficult to diagnose, treat and manage. On average, it takes nearly six years for people with lupus to be diagnosed from the time they first notice their lupus symptoms. Many others likely remain undiagnosed.
Late diagnosis, poor access to care, less effective treatments, and poor adherence to therapeutic regimens may increase the damaging effects of lupus, causing more complications and an increased risk of death.
The ALPHA Project’s goal is to enhance care for people with this difficult-to-treat disease. The initiative will consist of two parts:
- building a comprehensive picture of the challenges faced by individuals with lupus, and
- developing actionable solutions to address these needs.
- building a steering committee of leaders in the field of lupus,
- conducting qualitative research on the lupus patient journey to identify knowledge gaps in diagnosis and treatment,
- issuing a public report of the findings, and
- developing a roadmap to address these gaps.
The ALPHA Project will also build upon the National Public Health Agenda for Lupus, a first of its kind approach guiding lupus policy, planning, advocacy and action initiatives. The National Public Health Agenda for Lupus was published in 2015 by the Lupus Foundation of America in partnership with the National Association of Chronic Disease Directors (NACDD) and the Centers for Disease Control and Prevention (CDC).
“The road to diagnosis and treatment is often fraught with obstacles and frustration for people living with this devastating condition,” said Luciano Rossetti, MD, Executive Vice President, Global Head of R&D for EMD Serono.
“We are proud to partner with the Lupus Foundation of America and support their unyielding resolution to advance lupus research and treatment. At EMD Serono, we are committed to identifying innovative solutions to help people with chronic, under-served conditions like lupus and will never give up our search for ways to improve their care.”