The National Institutes of Health (NIH) have been around a long time. Beginning in 1887, the institute is known today for being the largest source of funding for medical research, worldwide. It is also the Federal focal point for medical research conducted in the U.S. The NIH has many parts to it—27 Institutes and Centers—and is one of the U.S. Department of Health and Human Services’ eight Public Health Service agencies.
In their words, the institute’s goal is “to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold [and their mission] is to uncover new knowledge that will lead to better health for everyone.”
The NIH—being such a robust organization—works on multiple research projects at once. A glance at their website in early May shows the release of new data centering on cancer immunotherapy, Alzheimer’s Disease, inherited blinding diseases, and healthy eating in midlife.
One of its studies—also the first and largest study undertaken, ever, focused on the health needs of women—is a long-term, national health study called the Women’s Health Initiative (WHI). In late April, the U.S. government cut funding, or a cancellation of contracts, for the WHI and then reversed these funding cuts days later.
What we know about the funding cuts reversal is this: public criticism from senators, scientists, and celebrities seemed to influence the Department of Health and Human Services to make its decision. The reversal seems to imply the study will continue to be funded as it has been, but the exact details are not confirmed yet.
What stands to be silenced if the study ends—which involves, in its first phase, 42,000 women giving data on themselves for 30 years ongoing—would be a loss of critical information on women’s health and health solutions. The study’s goal is preventing heart disease, colorectal and breast cancer, and osteoporosis in postmenopausal women, one of the fastest growing segments of the U.S. population. The study involves clinical trials of hormones and other medications and has already produced the most cumulative data set ever collected on women in their 80s and 90s.
Given that policies were in place discouraging the inclusion of women in clinical trials until 1993, the importance of the WHI continuing through completion cannot be emphasized enough. We all stand to learn—all we can—about women’s health and how to support it for the benefit of everyone living in our society.
Our team at FemmePharma has been asking ourselves, what can we learn from this situation and the way it unfolded (and is unfolding)? At the end of the day, we know the power that knowledge collection and sharing within our communities has—it takes place in our friendships, through conversation with colleagues, neighbors, and people around us, and in formal places of learning like schools, continuing education, and (ideally) our doctor’s offices.
Importantly, it starts with us—one woman, with one question, who uses their voice to speak up, ask, get informed, and then shares out that knowledge. This type of woman-women exchange becomes extra important when, at the federal level, knowledge about areas critical to the wellness of our world community are being seemingly played with, back and forth.
In other words: if what we receive is inconsistent, then we need to create consistency, in the most efficient and informed way we can. In previous blogs, we have spoken about the importance of women-focused collectives, which emphasize data building and self- and other-care.
Are you part of a group that focuses on individual and social-advocacy around women’s health? What makes you want to share with others? (And, ‘others’ includes men, too—because being informed about women’s health and women’s issues makes us all better equipped to care for one another.) What are the qualities of communities you feel you can trust and share in? We would love to hear from you! Let us know by emailing us at [email protected].