Stories and Viewpoints

When Information is Power: A Caregiver’s Story Accessing the Road to Wellness

 

By: Niki Kapsambelis

When Anindita Rungta looks back 10 years ago, to the summer of 2012 and one of the lowest points of her life, she has to ask herself: Did we really go through all that?

 

Her 6-year-old daughter, Aiyana, had struggled with atopic dermatitis – also known as eczema -- since she was a baby. It started as a case of dry skin, and for a few years, her parents saw improvement when they removed dairy from her diet. But then her skin started to deteriorate quickly, and nothing seemed to bring it under control.

During the summer of 2012, Aiyana’s condition deteriorated to the extent that she lost the entire outer layer of skin across her whole body. She was put on oral steroids and later an immunosuppressive medication to bring her condition under control. Then in 2013, her parents took her to the United Kingdom for another expert opinion; she was put on a different medication.

 

But within three weeks, she developed a severe infection that landed her in an intensive care unit.

 

“It felt like you were on the edge of a cliff, and all you could see was down,” said Anindita. “She was battling for her life for two weeks. That was the lowest point, I think, in our journey with eczema as a family. It was on her 7th birthday in the hospital on the Fourth of July that the doctors finally told us that she would make it.”

 

It was rock bottom. But it was also a turning point.

 

“That sort of changed the way I wanted to deal with her illness going down the line,” Anindita said. “I didn’t want to get back into that kind of situation. I was determined to find a long term and a more gentle solution for her health condition. ”

 

Like many people, Anindita had been focused on a cure; what she learned was that with a chronic disease like atopic dermatitis, healing is a journey -- one that requires patients and their caregivers to take an active role in managing their health. And access to reliable information is key to their ability to take that role.

 

It’s a road that a staggering amount of people are on. Atopic dermatitis impacts 2.8 percent of the global population, with the highest disease burden among children who are 1 to 4 years old.

 

To help people take an active role in their health and create better outcomes, Viatris has partnered with the International Alliance of Patients’ Organizations (IAPO), which promotes patient-centered healthcare worldwide, to create Patient Academy. This new online resource is designed to promote access to information and health literacy by offering medically verified information in a user-friendly, easily available format on a wide variety of topics.

 

Though usually not life threatening, atopic dermatitis “significantly affects quality of life,” noted Ravi Shankar, Viatris’ head of Global Therapeutic Area Excellence and Medical Services.

 

Moreover, it’s a condition that spills over into the wellness of parents and caregivers, he notes – as Anindita and her family experienced: “If a kid is having quality of life issues, it will impair the learning of the kid, but also impact the well-being of the parents,” who struggle with sleepless nights and finding the right treatment options for their children. Kids with atopic dermatitis often struggle with falling asleep, waking up at night and subsequent daytime sleepiness. The itching that is a hallmark of the disease is often worst at night.

 

When Anindita began researching ways to help her daughter, she was overwhelmed by the sheer volume of available information. It was difficult to filter, especially while trying to simultaneously help her daughter recover emotionally and mentally from the trauma of her experience.

 

That information overload interferes with the ability of patients and caregivers to take an active role in their own health, said Kawaldip Sehmi, the IAPO’s chief executive officer. Further complicating matters is the fact that while access to information is easier than ever, not all available information is scientifically accurate, making it difficult for people to differentiate between sound and questionable advice.

 

Patient Academy is designed to address this gap.

 

“The partnership helps us, firstly, boost self-advocacy by simply making sure that we can motivate patients to take action and be responsible for their health. And secondly, we make sure that confidence levels are higher for some of the complex treatments,” Sehmi said. “This ability to create that patient-centered healthcare is very important. We advocate for that: making sure that our healthcare fits around us,” and not vice versa, he added.

 

For Viatris, partnerships like Patient Academy are critical in helping to fulfill the company’s mission of empowering people worldwide to live healthier at every stage of life in part by delivering access to the tools that make that possible, noted Shekhar Potkar, the company’s head of Medical Affairs for Emerging Markets and Global NCD Excellence.

 

“We know that we have safe, effective and quality medicines available. But there are significant gaps we see in patient outcomes” across all disease areas, Potkar said. By following the patient journey, the company identified three potential explanations: policy hurdles, differences in medical education levels in clinical practice and a lack of patient empowerment.

 

Patient Academy is one tactic created to address the latter, he said: “This becomes a very critical approach.”

 

For Anindita and her daughter, empowerment has led to wellness. Now 16, Aiyana is taking a larger role in managing her own health. Removing food triggers, taking care of her own skin regime, ensuring that she gets enough sleep and managing stress have all contributed greatly to healing; medication is a short- to medium-term solution when she has flare-ups, and then she tapers off them.

 

In managing chronic disease, Anindita said one of the most important lessons she learned as a caregiver is how much taking control of everyday factors can lead to dramatically better quality of life:

 

“At the end of the day, I think the biggest thing that I learned is that you don’t need anybody’s permission to start creating health.”

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