The ALPHA Project’s goal is to improve lupus care. ALPHA stands for Addressing Lupus Pillars for Health Advancement.
There are two parts to the initiative. The first is painting a comprehensive picture of the challenges that lupus patients face. The second is developing ways to address those needs.
A key step in getting the initiative off the ground is creating a steering committee of experts. They will oversee research on patients’ needs and identify gaps in diagnosis and treatment. Then they will issue a report on their findings and develop a roadmap to address the gaps.
The multi-phase project will build upon the National Public Health Agenda for Lupus, the first guide to lupus policy planning, advocacy, and action. Three organizations worked together to create the agenda in 2015 — the Lupus Foundation of America, the National Association of Chronic Disease Directors and the government’s Centers for Disease Control and Prevention.
“The road to diagnosis and treatment is often fraught with obstacles and frustration for people living with this devastating condition,” Dr. Luciano Rossetti, the executive vice president of EMD Serono, said in a press release. “We are proud to partner with the Lupus Foundation of America and support their unyielding resolution to advance lupus research and treatment.”
Lupus treatment is still unknown territory. The disease’s impact varies by individual, making diagnosis, treatment, and management difficult and personal.
There are not enough simple tests that can identify the disease or predict its progression. So the journey to a diagnosis often includes multiple hospital visits, tests, and referrals — a process that can take years.
On average, it takes about six years for a lupus patient to obtain a final diagnosis. Many remain undiagnosed, experts believe.
The ALPHA partners’ main concern is that late diagnoses, limited access to care, less than effective treatments, and patients’ failure to stick to treatment plans are increasing the damage that the life-threatening disease inflicts.
“Lupus is a highly complex and debilitating disease that has no cures,” said Sandra C. Raymond, chief executive officer of the Lupus Foundation of America. “It is our hope that this project will lead to consensus positions and research directions agreed to by the international experts in lupus. We are pleased to collaborate with EMD Serono on this important work.”
The collaboration will help “translate science into new treatments and better tools to manage lupus with an eye directly on helping the patient as soon as possible,” Raymond added.
EMD Serono, which develops lupus therapies, presented data on the disease and other chronic conditions at the annual meeting of the American College of Rheumatology in San Diego, Nov. 3-8.
One presentation dealt with a Phase 2 clinic trial (NCT01972568) of the company’s lupus treatment atacicept.