Patient insight into peripheral neuropathy aids drug research

Jun 17, 2016
Patient insight into peripheral neuropathy aids drug research

A patient’s personal insight into their life with peripheral neuropathy recently helped a team of researchers at Astellas put a ‘face’ to the disease they are hoping to tackle by humanizing the importance of their work.

Peripheral neuropathy is a debilitating disease that develops as a result of damage to the nerves that connect your brain and spinal cord to the rest of your body, causing weakness, numbness, and pain, in your arms, hands, legs, and feet. There are many causes of peripheral neuropathy, including diseases such as diabetes, inflammatory infections, auto-immune conditions, or exposure to drugs or toxins. The pain can be felt as pins and needles, or as a sharp, jabbing, or burning sensation.

A person’s quality of life can change dramatically following diagnosis or slowly over time as their disease progresses, with physical difficulties and emotional problems affecting not only the individual themselves but also their friends, families, and caregivers as they adjust to the change in their lives.

This was brought to life when Astellas invited the Foundation for Peripheral Neuropathy to an internal meeting to hear from a patient with idiopathic peripheral neuropathy – Dolores Kavich – who has been suffering from the condition for the past 15 years in her feet, legs, and hands. To help alleviate the pain, Kavich takes two different medications, but nothing reliably eliminates her symptoms.

“Understanding the needs of the patient communities we serve is important as we work to maximize the value of potential new medicines,” says Ulf Tollemar, executive director and global development project leader at Astellas. “Hearing Kavich talk about how the pain has affected her quality of life – including limiting the time she can spend with her grandchildren – reinforced the impact we may have on patients’ lives.”

Meanwhile, as part of its Patient Focused Drug Development initiative, the Food and Drug Administration held a meeting on June 10, 2016, to gather patient perspectives on the symptoms they experience and how these impact on their daily lives. It was an opportunity to have a say in current and future approaches to treating neuropathic pain associated with peripheral neuropathies, and the decision factors taken into account when selecting a treatment.

*Ms. Kavich’s story as a peripheral neuropathy patient is her personal experience and may not be a typical peripheral neuropathy patient experience.

Patient insight into peripheral neuropathy aids drug research

Author

Pam Shlemon is the president and executive director of the Foundation for Peripheral Neuropathy (FPN), which was founded in 2007. Shlemon plays a critical role in shaping the research strategy as well as guiding strategic and programmatic direction, and spearheading the Foundation’s fundraising programs. She is fostering collaboration among a national team of neuroscientists and physicians dedicated to neuropathy research and treatment to develop new and effective therapies that can reverse, reduce and, one day, cure peripheral neuropathy, in line with the Foundation’s mission. Shlemon, who earned her degree in business administration from Eastern Illinois University, has more than 25 years of executive management experience in the healthcare industry. Prior to joining the Foundation, Shlemon was the regional vice president for ChartOne, a national leader in technology solutions for the healthcare industry. As a top-performing executive, leading major initiatives, she was key contributor to enterprise-level planning and decision making. She is also a member of the Board of Directors of Arts Refreshing the Soul.

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