For the third straight year, MassBio partnered with the Massachusetts Caucus of Women Legislators to bring the Women’s Health Symposium to Beacon Hill. After breaking barriers last year by hosting a discussion on menopause – a sometimes-considered taboo topic – the 2025 Women’s Health Symposium followed up by focusing on a disease that, unbeknownst to many, overwhelmingly impacts women: Alzheimer’s disease.
“This legislative session, the Caucus is focused on elevating women’s economic opportunity and eliminating barriers, and addressing disparities in healthcare. Alzheimer’s Disease lies at the intersection of both,” said Representative Hannah Kane, Vice Chair of the Women’s Caucus, as she kicked off the discussion with her Senate counterpart, Senator Joan Lovely. She went on to note that Alzheimer’s disproportionately affects women, not just as the majority of those diagnosed, but also as primary caregivers, health care workers, and family decision makers, carrying the burden throughout most of their lives in some way.
The economic cost of Alzheimer’s disease is staggering. More than 7 million Americans aged 65 and over are living with Alzheimer’s today, costing the United States $360 billion annually. By 2050, that number is expected to double to over 13 million. Almost 2/3 of those diagnosed are women. To make matters worse, women account for 2/3 of caregivers for patients. Just last year, nearly 12 million caregivers provided over 19 billion hours of unpaid care to those afflicted with the disease, and on average, Alzheimer’s caregivers experience higher levels of stress, depression, and health problems than caregivers of other diseases. (Source: Alzheimer’s Disease Facts and Figures, Alzheimer’s Association®)
Behind every statistic is a man or a woman who has had personal experience with the disease. MassBio CEO & President Kendalle Burlin O’Connell shared her experience through the story of Marge Cook, her Aunt Dee’s wife, an elementary school principal and ski instructor from Stowe, Vermont. “She just loved kids. She was fearless. Energetic. Always in motion,” said Burlin O’Connell. Then, 10 years ago, Marge began forgetting things – who people were, where she had placed things, and asking the same questions over and over again. She also got angry. “Instead of what was meant to be an adventurous decade, it was exhausting and heartbreaking for my Aunt Dee.” It’s a story that is currently playing out in millions of homes across the United States. But it is a story that we can change — “there is hope.”
While the challenges of curing Alzheimer’s are profound, in Massachusetts, we have not lost hope. Despite not being curable, new medications are slowing the decline and buying more time for patients, which means more precious moments with loved ones. Every day, we are closer to a breakthrough, and the persistence of companies here in Massachusetts continues to offer hope to the millions impacted by the disease.
Massachusetts is not only leading the way in the biotech space, but also on Beacon Hill. This session, Representative Kilcoyne and Senator Oliveira have introduced legislation that would increase patient access to biomarker testing, which can lead to earlier diagnoses and improved patient outcomes. Representative Gregoire, who championed sweeping Alzheimer’s and Dementia legislation that was signed into law in 2018, has filed legislation that seeks to build on the 2018 provisions.
Despite the attention on the overwhelming impact of Alzheimer’s disease, women’s brain health remains under-researched and underfunded. Representative Carole Fiola, Chair of the Joint Committee on Economic Development and Emerging Technologies, led a panel of experts in a robust conversation on the matter. Members of the panel included Dr. Rachel Buckley, Associate Professor of Neurology at MGB and BWH, Dr. Jill Goldstein, Executive Director, Center of Disease Differences in Medicine at MGH, Dr. Traci Schilling, AVP, US Medical Affairs, Alzheimer’s Disease at Lilly, and Katie Schubert, President & CEO at the Society for Women’s Health Research.
To better understand Alzheimer’s, we need to first better understand the differences in the male and female brains. “Sex differences in the frequency of disorders of the brain are pervasive, and we need to be thinking about what the causes of these differences are in order to be able to develop more effective therapies and diagnostic tools to target them early,” said Dr. Goldstein, emphasizing the importance of early detection, especially in relation to menopause, the female brain, and the onset of Alzheimer’s disease. In fact, menopause and its relationship with Alzheimer’s disease could be key in developing effective treatments. Dr. Buckley, whose research on biomarkers has shown that changes can appear decades before symptoms, expounded on the relationship between menopause and the increase in tau tangles, a key biomarker of Alzheimer’s disease. Dr. Buckley’s research has shown that an earlier onset of menopause is associated with a higher incidence of tau tangles, and menopause, regardless of age, is associated with an increase in the protein. And while more research is needed, there is also a relationship between hormone replacement therapy and tau buildup in some women. These findings can lead to earlier detection and more effective treatments of the disease.
Dr. Schilling of Lilly explained how this research is already having a real impact and why early detection is so important. There are now, for the first time, FDA-approved therapies that target the disease itself and slow the progression of the disorder for patients with early symptomatic Alzheimer’s disease. Schilling also stated that the FDA has recently approved two new blood biomarkers for amyloids, another abnormal protein in the brain that is a hallmark of the disease. Blood biomarkers are less invasive than other tests and help reduce barriers to care by being more accessible for those in traditionally underserved communities.
Despite these recent advances, barriers to care still exist for many. “This is an area where science and innovation is outpacing policy,” said Katie Schubert, highlighting regulatory barriers and the lag that often exists between policy-making and scientific advancement. Schubert also highlighted other barriers to care, such as the stigma surrounding the disease and a lack of healthcare coverage for blood biomarker testing.
The conversation then turned to the exorbitant direct and indirect costs associated with the disease. While direct costs associated with medical care might come to mind when thinking about an illness, some of the indirect costs associated with Alzheimer’s are substantial and overwhelmingly impact women. Many women are forced to leave the workforce to care for a parent with the disease or make tough decisions regarding the time off their employer offers. The “caregiver burden,” as described by Schubert, can have a profound effect on the mental health of the caregiver, leading to burnout.
The conversation concluded with a question from Chair Fiola on the industry’s role in turning Massachusetts into a global hub for women’s brain health innovation. Dr. Schilling touted the opening of the Lilly Seaport Innovation Center, specifically the Lilly Gateway Labs, which offer opportunities for small and early-stage biotechs, particularly those with an interest in women’s health, to access Lilly resources and scientists, thereby facilitating the rapid translation of innovations from labs to patients. Schilling also highlighted Lilly’s partnership with Pillar VC, the Women’s Health Innovation Suite, helping biotech companies innovate specifically for women’s health issues.
Despite the difficult topic, the third annual Women’s Health Symposium was filled with a constant theme: hope. Science and innovation have already led to significant breakthroughs in Alzheimer’s testing and treatment, and Massachusetts continues to be a national leader in both research and policy.
