Carolee Lee

For many years, Carolee has been challenging the unspoken myth in medical practice that women are just like men – only smaller. She bristles at the thought that most of the research guiding health care decisions for women is based on a standard very different from most women – a 175 lb. male. We have not, she points out, studied sex as a biological variable. If we did, we might understand why some conditions, such as heart disease, affect women differently; why autoimmune diseases affect women disproportionately (4 out of 5 sufferers are female); and why certain cancers strike only women.

But if we want women – who make 85% of the spending decisions and 80% of the household health spending decisions – to stay healthy and contribute to the wellbeing of our families, workplaces and economy, then we must study them separately, she says. “Women are different down to the cellular level,” Carolee points out. Which means that for women to receive the level of care commensurate with their importance at work and at home, we must address the great disparities in how we invest in women’s health.

Carolee speaks in percentages: 15%. 12%. 7%. 4.5%. These are the amounts that agencies such as the National Institutes for Health ( NIH) have budgeted for research into the diseases that affect women. Out of a total allotment for lung cancer research (which kills more women than ovarian, breast, and cervical cancer combined), just 15% is allocated for studying lung cancer in women; out of a total research budget to investigate Alzheimer’s, just 12% is for research on Alzheimer’s in women (although two-thirds of all Alzheimer’s patients and caregivers are female); although 80% of all patients struggling with autoimmune conditions are women, just 7% of the research budget is allocated to autoimmune disease;  and despite the fact that heart disease is the number one killer of women and that more women die following a heart attack than men, only 4.5% of the NIH budget for studying heart disease will focus on heart disease in women.

“Why do we accept this?” Carolee asks.

There’s a positive intent behind the gaps. In 1977, after the thalidomide disaster of the 1950s and ‘60s when a medication for morning sickness resulted in more than 10,000 deaths and birth defects in babies, the FDA opted to exclude women of childbearing age from most early phase clinical research. The FDA finally reversed that rule in 1993 and officially mandated the inclusion of women in research. Still, the result was decades of data that missed how differently a woman’s body can manifest an illness or respond to a medication. Of all the drugs taken off the market because they caused adverse reactions, 80% were withdrawn because they had adverse effects on women. The complications are compounded for women of color.

Carolee didn’t start out a warrior for women’s healthcare. She attended college, settled down in Connecticut and had three children.  She began her first company—Carolee Designs—by making jewelry in college to pay for expenses. The company kept growing and building its brand. Eventually, Carolee Designs was contracting with the famous retail stores of New York and every major city, on its way to becoming one of the world’s leading accessories brands.

As it grew, Carolee found herself running a business with more than 300 employees, 85% of which were women.  The company culture emphasized teamwork; Carolee had grown up playing sports and loved the spirit of a team. “We were collaborative, creative, nurturing,” she remembers. “And as women, we understood and loved the product. We knew how to wear it with style and how it made us feel.”

In 2001, after years of success, Carolee sold her company and began to focus full time on exploring the disparities in healthcare for women. “I knew from running a company how important it is to have healthy employees,” she says. “Investing in the health of women is not only a moral imperative; it’s economically sound.”

At that point. she’d been on the board of the Breast Cancer Research Foundation for 20 years. It taught her much about medical research and the state of medical care for women. She decided to focus most of her energies and attention on making an impact in women’s health, knowing that doing so can impact the world of business as well.

In 2020, along with a group for successful businesswomen, she launched WHAM—short for Women’s Health Access Matters. WHAM is a 501(c)(3) dedicated to increasing awareness of and accelerating funding for research and investment in women’s health. Today, WHAM is that significant voice for women’s health. In 2021, WHAM commissioned the RAND Corporation to explore the economic impact of increasing funding for research in four areas most likely to affect a woman’s health: cancer, cardiovascular disease, autoimmune disease and brain health. For her contributions in bringing these disparities to national attention and working to create change, Carolee was named to TIME magazine’s inaugural “TIME100: List of the World’s Most Influential People in Health” in 2024.  She is also a Senior Advisor to the Milken Institute’s initiative on women’s health, as well as many other collaborations that continue to drive change in how we think about women’s health research and investment.

“The only people who can change what isn’t working are the people for whom it’s not working,” she says. “Change doesn’t happen by chance; it happens by choice.  Women must pay more attention to our health … and speak up and support the opportunity to create a transformation to fund the health of women.”