Merck KGaA, Darmstadt, Germany and Lupus Foundation of America Launch Initiative to Improve Future of Lupus Care
- The ALPHA Project aims to identify critical gaps and solutions for people with lupus, a disease affecting 1.5 million Americans
- Insights-driven collaboration paves path for timely and accurate diagnosis, greater access to care and improved treatment options
Merck KGaA, Darmstadt, Germany, a leading science and technology company, and the Lupus Foundation of America (Foundation) 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[i] have a form of lupus and as many as 16,000 new cases are reported each year.[ii] In addition, lupus impacts at least 5 million people worldwide.
“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 the biopharma business of Merck KGaA, Darmstadt, Germany. “We are proud to partner with the Lupus Foundation of America and support their unyielding resolution to advance lupus research and treatment. At Merck KGaA, Darmstadt, Germany, we are committed to identifying innovative solutions to help people with chronic, under-served conditions like lupus and are resolute in our search for ways to improve patient care.”
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. Simple tests that allow clinicians to reliably identify lupus, as well as track and predict disease progression and related organ damage, are lacking.[iii] The patient journey is often characterized by multiple visits, tests, and referrals over months – even years – prior to diagnosis.[iv] On average, it takes nearly six years for people with lupus to be diagnosed from the time they first notice their lupus symptom.[v] 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.[vi]
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. This includes 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).
“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 Merck KGaA, Darmstadt, Germany, 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.”
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About Merck KGaA, Darmstadt, Germany
Merck KGaA, Darmstadt, Germany, a leading science and technology company, operates across life science, healthcare and electronics. Around 60,000 employees work to make a positive difference to millions of people’s lives every day by creating more joyful and sustainable ways to live. From advancing gene editing technologies and discovering unique ways to treat the most challenging diseases to enabling the intelligence of devices – the company is everywhere. In 2021, Merck KGaA, Darmstadt, Germany, generated sales of € 19.7 billion in 66 countries.
The company holds the global rights to the name and trademark “Merck” internationally. The only exceptions are the United States and Canada, where the business sectors of Merck KGaA, Darmstadt, Germany, operate as MilliporeSigma in life science, EMD Serono in healthcare, and EMD Electronics in electronics. Since its founding in 1668, scientific exploration and responsible entrepreneurship have been key to the company’s technological and scientific advances. To this day, the founding family remains the majority owner of the publicly listed company.
MilliporeSigma, the U.S. and Canada Life Science business of Merck KGaA, Darmstadt, Germany, is the first CTDMO (contract testing, development and manufacturing organization) to offer integrated services