Working Together For Patients


Meet Aparna

A Mother’s Strength, an Advocate’s Determination:
Redefining Possibilities for Patients with Rare Diseases

Aparna’s home in the quiet suburb of Hillsborough, New Jersey, is filled with natural light streaming in through oversized windows and exposed entryways. Intricately patterned area rugs, Indian wall hangings, statues and other Hindu-inspired artwork celebrate the family’s pride in their heritage. Natural woodwork is accented by ramps leading outdoors and into recessed areas. Aparna’s 19-year-old son Tayjus navigates those ramps expertly in a power wheelchair equipped to accommodate the rare disease that has been gradually eroding his physical strength and mobility.

Aparna had only been working as a clinical programmer on Bristol-Myers Squibb’s Global Biometrics Sciences team for six months when five-year-old Tayjus was diagnosed with Duchenne Muscular Dystrophy (DMD). Universal support from managers, co-workers, friends and family has helped her redefine what can be achieved by focusing on one day, and one goal, at a time. Now, 14 years later, Aparna and Tayjus are supporting Bristol-Myers Squibb’s advocacy and clinical development teams—helping them understand the challenges of dealing with rare childhood diseases so they can design more accommodating clinical trials with better access for patients and caregivers.

When Mother, Caregiver and Professional Roles Collide

When Aparna joined Bristol-Myers Squibb in 2001, she was planning to focus on her career since Tayjus and his older brother, Rohith, were both in school. Then Tayjus was diagnosed with DMD, a rare form of muscular dystrophy that affects approximately one in 4,600 boys worldwide. The disease leads to progressively worsening disability, with death usually occurring by age 25, typically from lung disorders.

She knew working full-time was no longer an option, so she approached her manager and said, “This is the situation; I need to go part-time.” He was unhesitatingly flexible, and said, “Whatever you need.”

She switched to a part-time role immediately and cut back her responsibilities. At one point, when last-minute deadlines became too demanding and her work-life balance was out of alignment, her manager allowed her additional flexibility.

“I can’t thank everyone enough,” says Aparna. “Most people probably didn’t realize the extent of support they were giving me, because I didn’t make a big deal or complain about how hard it was at home and how much I was struggling. I just said, ‘These are my needs and this is what I need to do.’”

“I don’t think people understood the nature of the disease because I didn’t talk about it,” she adds. “They knew it was progressive. They didn’t know how severe it is, or the prognosis, because I didn’t focus on that.”

This resolute focus on what one can control is clear as Aparna speaks—articulately, with conviction, and with no trace of self-doubt—and it is something she passed on to her children.

We kept telling Tayjus, ‘You can’t play sports because your muscles aren’t strong enough, but there are other things you can be really good at.’

The Road to Harvard

Tayjus doesn’t dwell on what he can’t control either. He is focused, driven and determined to excel at what he can do: study hard, earn good grades and keep up with the pack of high-achieving friends he’s been hanging out with since second grade. This commitment to academic excellence is apparent as he speaks, delivering his points with clarity and an impressive amount of ease.

While most seven, eight, and nine-year-old boys stayed active playing sports, Tayjus focused on his academics as his walking became more impaired. “We kept telling him, ‘You can’t play sports because your muscles aren’t strong enough, but there are other things you can be really good at.’ We channeled his interests into Legos, math, and reading,” says Aparna. “We just dealt with what we needed to at the time. We never focused on long-term effects.”

Aparna’s ‘live in the moment’ philosophy extends to every aspect of her family life. “At first, our priority was, ‘How normal can we be?’” says Aparna. “I didn’t want to behave, or create the feeling in the house, that something really tragic happened. Things might get that way down the road, but we’ve got to take things one day at a time. As a family we can bring out the best in each of us.”

Most teenagers with DMD attend school close to home. Not Tayjus. When he was in eighth grade, his grandparents told him they were planning to move back to India. He solemnly said to his grandmother, “Don’t you want to see me attend Princeton or Harvard?” So his grandparents stayed.

In September 2015, Tayjus began his second year at Harvard.

In the beginning, Aparna and her husband, Prasad, talked a lot about this move. How could he go to college five hours away from his family of caregivers? “For two days after he was admitted we were euphoric,” says Aparna. “And then it hit us: how could we possibly make it work?”

Aparna took a two-and-a-half-month family leave to scope out the situation and stayed in Cambridge for a month. She found an agency that supplied personal care assistants who could stay with Tayjus in his dorm apartment and help him with grooming and other needs. She established a network of healthcare providers on campus and specialists at a nearby hospital. And Tayjus left for school in the fall like any other college freshman, excited about what lay ahead. He transitioned faster than expected and Aparna returned to New Jersey within a month.

We’ve accomplished things people in our situation haven’t. Now everything we’re doing is new ground.

That summer, Tayjus secured an internship with a therapeutic biotech company near his home in New Jersey that was working on a treatment for DMD. For two and a half months he worked like many of us do—five days a week, 9:00 a.m. to 5:00 p.m. He handled all of his own technology, including typing, which is something many patients with Duchenne Muscular Dystrophy are forced to give up. A personal care assistant helped him with his personal needs.

“Now our mantra is we pushed the envelope, we pushed our limits, and we’ll continue to do it,” says Aparna, leaning forward as she speaks. “We’re not just going to sit back and say this is all we can do. We’ve accomplished things people in our situation haven’t. Now everything we’re doing is new ground.”

From Research to Inspiration and Advocacy

Over the years, Aparna and her family have become very committed to reaching out and networking with other families who are dealing with DMD. “A lot of people tell us how incredible it is that Tayjus got into Harvard. It gives their sons hope,” says Aparna. “I don’t think it’s possible for every family to do that. It depends on so many factors—resources, situation and strength.”

How long you live doesn’t matter. What you do in the time you have and what difference you can make to others is what really matters.

Tayjus appreciates the environment he grew up in, and the opportunities he’s had, and wants to utilize what he’s learned to help others. He would like to study law and work in public policy where he can have an impact on legislation. “I always tell him this is his chance to make a difference,” says Aparna. “How long you live doesn’t matter. What you do in the time you have and what difference you can make to others is what really matters.”

Aparna certainly lives by this credo. When she heard Bristol-Myers Squibb was embarking on trials for DMD and other genetically-defined diseases, she found her opportunity to make a difference. She attended the first presentation, introduced herself to the team and offered to help them get familiar with the basics of the disease.

Eventually, Aparna joined the team for a six-month work rotation, where she and Tayjus contributed their insights from their perspectives as patient, caregiver, and employee. Early on, the team asked Tayjus to meet with them. “No one had actually worked with anyone with DMD,” says Aparna. “No one had seen a child with DMD. They didn’t know what to do with the devices or how to design the clinical trials.”

“These were all great professionals from every area of a bio-pharmaceutical company. Where else would Tayjus get that kind of opportunity to work with such a team?” asks Aparna. “We explained our day-to-day challenges. We talked about what is most important in a clinical trial; what would matter most for Tayjus. And we talked about the DMD community and its landscape.”

“This was really important,” says Aparna. “It was an eye opener. They looked at him and studied him keenly. How many people find themselves in this unique position to make such a direct contribution?”

A Career Milestone and Looking Ahead

Walking around her backyard garden with her mother, Aparna looks back at her career. She has worked in the pharmaceutical industry for close to 22 years. She is excited about Bristol-Myers Squibb’s shift to seek out and listen to patient voices when designing and executing clinical trials. With Aparna’s input, the team made accommodations to make participation less of a burden on participants. “Enrolling patients for a rare disease clinical trial can be really difficult,” says Aparna. “If you make a trial comfortable, convenient and manageable, families may be more compliant and complete it, which benefits everyone.”

Her six-month rotation with the Diversity and Patient Engagement team, led by Lori Abrams, will last through this fall. When asked to describe her experience she is succinct: “It has been the hallmark of my career.”

Aparna has now discovered her heart is in advocacy, and she hopes to continue along that path both at work and in the DMD community. She is very grateful to Bristol-Myers Squibb for making so many things possible.

“This journey has been spectacular for me,” says Aparna. "It has taught me that you can take on anything and make it positive. I understand other families may not be able to handle situations the same way because they have other challenges. It’s really difficult. These were the resources available to me, and this is what we were able to do. My heart goes out to every mother, every family, that is struggling to help a child with challenges.”