On April 8, my organization, HealthyWomen, held the first of our Capitol Conversations, a series of breakfast briefings we’ll be holding for Congressional staff and patient health advocates about topics that affect women’s health. The conversation included robust discussion of the patient experience, potential for innovation in women’s health, the impact that genetically targeted technologies can have on patients and their caregivers — and, of course, some really good coffee.
All this got me thinking, as I often do, about our long history of women’s health being pushed to the sidelines — quite literally. In 1977, the FDA set guidelines that barred researchers from including women “of childbearing potential” in clinical trials — which means that our collective understanding of diseases and treatments today are largely based on men alone.
While the effects of this ban still linger, Congress ended this discriminatory practice in 1993 when it mandated by law that women be included in all clinical research. Over 30 years later, Congress is now facing another opportunity to transform women’s healthcare by passing the bipartisan Maintaining Investments in New Innovation (MINI) Act, a small technical fix to the Inflation Reduction Act.
Introduced this March, the legislation would ensure access to medical therapies created with genetically targeted technology (GTT), which aims to correct or modify genetic material in order to treat diseases. By “getting to the root cause,” GTT could stop the growth and progression of a range of chronic diseases and rare conditions affecting all people but — because it can target sex-specific genetic factors — it has the potential to revolutionize the prevention, diagnosis and treatment of multiple complex and hard-to-treat disorders that disproportionately affect women. These include rare diseases, pediatric and neurological conditions, autoimmune disorders and — perhaps the most obvious — heart disease, which is the leading cause of death for women.
According to the U.S. Centers for Disease Control and Prevention, approximately 1 in 5 women will die from heart disease — more than from all cancers combined. Women in this age range also experience hypertension and high cholesterol — both risk factors for heart disease — in greater numbers than men.
Women experience worse outcomes from all forms of cardiovascular disease (CVD) because they have different genetic risk factors compared to men, but the passage of the MINI Act has the potential to lead to technology that identifies and treats women with a higher predisposition to conditions like coronary artery disease, hypertension and stroke. This could be particularly beneficial to Black women, who are more genetically predisposed to high blood pressure.
The MINI Act could also benefit patients with peripheral artery disease (PAD), a genetic vascular disorder that narrows arteries and reduces blood flow to arms and legs. PAD is a major factor contributing to limb loss, and GTTs hold great promise for future treatments of this debilitating genetic condition.
In addition to being disproportionately affected by heart disease, women bear the brunt of many rare diseases, especially those related to autoimmune conditions. In fact, women account for about 80% of autoimmune disorders, including lupus and Sjögren’s disease, which researchers believe could greatly benefit from GTTs. Additionally, women are disproportionately affected by LAM, a lung disorder with painful symptoms that could be alleviated by GTTs.
On top of all this, this technology can help enhance access to healthcare, which is consistently a higher barrier for American women than men. As opposed to traditional treatments, which can require multiple pills daily, GTT treatments tend to be administered in less frequent injections over the course of the year, which eases the burden on patients and their caregivers, who are predominantly women. This could have particularly positive impacts on people in rural communities for whom it can be especially difficult to access care.
By increasing access to GTT, the MINI Act has the potential to dramatically improve the lives of millions of women, which is why it has already been supported by a wide range of healthcare organizations, including Family Heart Foundation and Amputee Coalition. And advancement in women’s health is best obtained by bringing together multiple stakeholders, including networks of experts, strategists and community partners who can mobilize efforts to advance women’s healthcare, access, and dialogue at both national and state levels. True change will only come at the intersection of innovation and collaboration — with or without the coffee.
Beth Battaglino is CEO of HealthyWomen and a registered nurse who specializes in maternal child health.
