Advocacy on Capitol Hill
Boston College Connell School of Nursing Professor and Elizabeth Power Keohane Faculty Fellow Karen Lyons visited Capitol Hill earlier this month to advocate for National Institutes of Health funding for research impacting older adults. She was there as a member of the board of directors representing the Gerontological Society of America.
She met with legislative aides, assistants, and policy advisors representing several Massachusetts lawmakers, including U.S. Senator Elizabeth Warren and U.S. Representatives Jake Auchincloss, Katherine Clark, Stephen Lynch, James McGovern, and Ayanna Pressley.
CSON Professor Karen Lyons (on right) and Rebecca Bailey represented the Gerontological Society of America on Capitol Hill. (Courtesy photo)
According to Lyons, the group’s message to lawmakers included conveying the importance of NIH/National Institute on Aging funding to improve the lives of older adults and their families through groundbreaking scientific discoveries and the development of much needed supportive programs and improved care systems.
“We also wanted to share the impact of the tremendous disruption to research over the last year with grants cancelled, significant delays in funding, and fewer grants funded,” said Lyons, whose research is focused on how two-person family care dyads experience and navigate illnesses ranging from heart disease to dementia to cancer, among other conditions. “All of this disruption not only slows down needed research in areas such as Alzheimer’s disease and dementia, cancer, heart disease, and supporting the 1 in 5 adults providing care to a family member, but it also impacts the workforce pipeline.”
Specifically, Lyons and her colleagues asked lawmakers to support an 8.7% increase in NIH funding for FY 2027; the FAIR (Financial Accountability in Research) model to address concerns by Congress around indirect/infrastructure costs of research; and limits on multi-year funding strategies at NIH.
“This is the second year I have participated in Capitol Hill Day and each time I have come away feeling hopeful and more convinced of the importance of doing this advocacy work,” said Lyons. “The day was filled with productive meetings and candid conversations with legislative aides and policy makers, who are eager to hear about the impact of NIH disruptions on research, the broader impact on the economy, but also proposals like the FAIR model.
“In many cases, the people we met on Capitol Hill had their own personal stories of providing care to a family member, which reminded me that regardless of our views, we are all on the same side and we all want to improve the lives of older adults and their families. Advocating for research is not something researchers or faculty often get trained to do, but it is not as intimidating as I thought, and it feels good to be doing something. I can tell you that it can and does make a difference.”
Kristyn Stoia ‘23, a CSON master’s degree student, was also on Capitol Hill advocating for greater awareness of endometriosis and adenomyosis and policy reforms related to these conditions.
Kristyn Stoia '23, a graduate student in the Connell School of Nursing, shared her experiences with staff representing lawmakers from the U.S. Senate and House of Representatives. (Courtesy photo)
As a representative of the Women’s Health Advocates, Stoia met with officials from the offices of U.S. Senator Ed Markey, as well as the offices of Warren, Pressley, and Auchincloss.
“This work is very important to me, both as an endometriosis patient and as a Boston College nursing student,” said Stoia. She explained that two surgical treatments for endometriosis are ablation and excision. Excision, a complex surgery that can last three to eight hours, is considered the ‘gold-standard.’ Ablation is typically accomplished in under an hour, but may need to be repeated. But both procedures carry the same CMS (Medicare and Medicaid) reimbursement coding, which disincentivizes hospitals from offering the more costly, often more effective, option to women.
“The gold standard of care should be the expectation,” said Stoia who underwent both ablation and excision. “The excision surgery was truly life-changing. When women get the treatment they need, they heal. They go back to their lives, their work, their families. They build careers, they lead, they leave their mark. That is what is at stake when we fail to advocate for proper care.”
Stoia hopes other nursing students advocate for what they believe in.
“Nursing students sit at the bedside, we hold the hands, we see what inadequate care costs a person. That knowledge is a responsibility. Take the cause that keeps you up at night and do something with it. Go to [Capitol] Hill. Write the letter. Make the call. Healthier tomorrows do not build themselves. St. Ignatius called us to ‘go forth and set the world aflame.’ So go."