PPD Heroes: Advocating for the patient’s voice during COVID-19
PPD Hero and employee Sara Ashenfelter is living with a number of incurable rare diseases, many involving the immune system. It took four years for doctors to identify the source of her symptoms – weakness, difficulty breathing and recurring infections. Now, living in the middle of the COVID-19 pandemic, Sara has learned ways to adapt to keep her health a priority.
Preparing for a pandemic
Sara is a part of several international online support groups, so she had an idea of what the United States was going to experience at the beginning of 2020.
“It was like watching a tidal wave come in,” Sara described as she watched COVID-19 spread across the continents. She gained insight from her friends around the globe being impacted by the virus’s quickly increasing movement. Seeing so many friends in other locations going through the same thing helped her both mentally and emotionally.
Because she saw it coming, Sara was able to better prepare. While being mindful of quantities, she knew to pick up essential items to last her for an extended period of time.
“When I went to the grocery store, I would get a couple extra cans of soup or some staples, because I knew that as an at risk person I would need to stay away from stores for a long time,” Sara said.
Some of her doctor appointments got off to a rocky start as the pandemic hit, but Sara remained unstartled as the medical community transitioned to virtual visits, understanding everyone was in a learning process.
“Things got better as they got more established,” she said. “The time to get up and running was pretty fast for that community.”
Now, some doctors have already told Sara virtual visits will be the “new normal” for some specialties.
“For someone who is immuno-compromised, this is actually how life should be,” Sara said.
Advocating for the patient
Earlier this year, Sara took part in a PPD webinar that explained how patient-centricity throughout the entire life of a trial can change the shape of the study and how it’s managed. She was invited to share her experience and perspective as a patient who is living with a variety of rare diseases.
“When I reflect on my experience, I realize that patients need to be seen as key stakeholders,” Sara said in the webinar. “Our voices matter and need to be heard.”
She talked about the importance of increasing patient access to clinical trials. While a patient may want to participate in a trial, it may not be feasible for a variety of reasons, ranging from the location of the study to not being able to take time off from work.
Sara is grateful that PPD has prioritized the patient voice in clinical studies. She felt honored for the unique opportunity to be someone invited to share that voice.
Developing a vaccine
Scientists are racing to develop COVID-19 vaccines on an unprecedented timeline, and many developers are moving at a pace that has never been seen before. While many are hopeful a vaccine will bring things back to “normal,” it is unclear what role it would directly have for patients like Sara, whose primary immunodeficiency means she doesn’t make immunoglobulin, the antibody soldiers that go to war for your body.
As we approach 2021, Sara hopes people can go back to living their lives without fear, as it has been an undercurrent for so many.
“Fear has had an overwhelming effect in the community and how we interact,” said Sara, explaining that people are afraid of getting the illness; are worried about what’s happening to their children who are learning virtually; and are scared of how the pandemic is impacting mental and social health in general.
Sara is hopeful there will be less friction in the world and more connecting.