Guest Post: Using the patient voice to go boldly

Every day, I hear heartbreaking stories from people affected by lupus struggling with this debilitating and potentially fatal disease.

Guest ContributorMay 30, 2019

Guest Post: Using the patient voice to go boldly.

Conversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The Catalyst welcomes guest contributors, including patients, stakeholders, innovators and others, to share their perspectives and point of view. Views represented here may not be those of PhRMA, though they are no less key to a healthy dialogue on issues in health care today.

In honor of Lupus Awareness month, we are pleased to share a blog post from Stevan W. Gibson, president and Chief Exectuive Officer of the Lupus Foundation of America. 

Every day, I hear heartbreaking stories from people affected by lupus struggling with this debilitating and potentially fatal disease. What gives me great hope is that there are many lupus researchers committed to doing innovative work with the goal to develop treatments to improve the quality of life for all people with lupus and ultimately end this disease.

Lupus is known as the cruel mystery because it is hidden from view, difficult to diagnose and a challenge to treat.  One of the most challenging aspects of developing treatments for lupus is its heterogeneity. That is lupus looks and manifests differently in each person. Understanding how lupus affects those living with it, and using that information to tailor research to meet their needs, is an important factor in developing new and effective treatments. 

The Lupus Foundation of America is paving a path forward in lupus research, and it starts with incorporating the patient perspective into the drug development and approval process. Every aspect of our work is grounded in the belief that the people we serve are the experts, and this is why we provide people affected by lupus with the tools and opportunities they need to elevate their voice and help inform lupus research.

Simply put, we prioritize the patient voice. This means convening lupus advocates each year to raise their voices on Capitol Hill in support of policies that address the needs of the estimated 1.5 million Americans with lupus. This means embracing the FDA’s patient-focused drug development program, which engages patients and their families to better inform the agency how to develop the most effective medical products. This means working with those in the private sector interested in developing lupus treatments to help them understand aspects of the disease from those that understand it the best – people living with lupus.

Today, there is more promise for new lupus treatment discoveries than ever before.  We believe the patient voice is critical to these new discoveries, and we are thankful to the researchers and companies who are taking the bold steps to make them a reality.

Stevan W. Gibson is President and Chief Executive Officer of the Lupus Foundation of America, overseeing the senior management of the organization, focusing on the Foundation’s growth, strategic framework, and carrying out its mission through research, advocacy, care services and development.

Gibson is committed to accelerating the research pathway toward better treatments and an end for lupus while also raising the profile of lupus on the nation’s health agenda through government advocacy and awareness initiatives.

Prior to joining the Foundation, Gibson spent nearly 20 years with The ALS Association (ALSA) where he served most recently as Chief Mission Strategy and Public Policy Officer. He also has experience consulting with global corporations and serving on national and governmental organizations.

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