Lyndsey Harper
Women’s health has been under-researched, underfunded, and underdeveloped since “women’s health” was even a thing. Historically, investigation of women’s health concerns is prioritized by level of lethality (cancer) and propagation of the species (fertility) — two of the most developed and funded areas of women’s health. However, we’re out of luck regarding anything related to quality of life, everyday issues women everywhere face.
As the physician founder of a four-year-old women’s health company, I have a backstage pass to the complicated relationship between physicians and founders in women’s health. Through these interactions, and as a member of both groups, I developed a plan that will benefit the future of women and our health through collaboration between the medical community and innovators.
Only 30 years ago, through the NIH Revitalization Act of 1993, researchers funded by the National Institutes of Health (NIH) were required to enroll women and ethnic/racial minorities in clinical research trials. Even then, the vast majority of these trials were not designed to address the needs of women from our perspective.
Need some examples? Here are a few of my favorites:
- Oral contraceptives. When I was a resident and early attending, I used to joke that “birth control” needed a rebrand. Why? We OB-GYNs use it for everything: prevention of pregnancy, heavy cycles (fibroids or adenomyosis), irregular cycles (PCOS), painful cycles (endometriosis), PMS, PMDD, and acne. Bring me a woman’s health condition, and the current medical advice likely is to prescribe birth control.
To be clear, I’m not anti-contraception, as it’s a game-changer for people who don’t desire pregnancy. As women, we have made leaps and bounds of progress since contraception was made widely and commercially available — likely the reason that I, a female doctor, am in the position to write this today.
But after 60 years, why is birth control still the go-to treatment for all of these other severe and vital conditions that cause serious problems (chronic pain, missed work, depression, anemia, infertility)? It feels like we found something that was “good enough” and then failed to invest in the actual causes and targeted treatments for each of these conditions that are affecting billions of women every day.
- Endometriosis. Endometriosis causes debilitating pelvic pain for more than a week each month, infertility, excruciatingly painful sex, diarrhea, painful bladder, and immensely heavy bleeding with long and irregular periods. This is the daily reality for more than 10% of women living with endometriosis (and that number is likely an underrepresentation), a disease where the lining of the uterus (the endometrium) travels to other parts of the body and wreaks havoc. Doctors are still taught “theories” about why this might happen, but we still don’t know.
In addition, there’s still no noninvasive way to diagnose endometriosis, meaning women must have surgery to accurately ascertain whether endometriosis is causing their symptoms. Doctors often want to avoid surgery at first, but without any other way to diagnose endometriosis, women are left without answers and, as a result, don’t get adequate or definitive treatment. This is a tragedy for women, resulting in an average of 10 years of these horrendous symptoms before a diagnosis is made. It’s unacceptable.
- Women’s sexual health. Women make up 51% of the population, and 43% of women have sexual health problems, including low desire and trouble with orgasm, arousal, or lubrication. It’s been reported that 70% of women will experience pain with sex during their lifetime. Most people (even doctors) don’t know these numbers because the sexual health of women continues to be shrouded in embarrassment and shame. This is in stark contrast to men’s sexual health, for which there are dozens of FDA-approved medications (compared to 2 for women), copious resources from urologists, and advertising for men’s sexual health interventions (pay attention during the Super Bowl). I spent two weeks in an erectile dysfunction clinic at the VA as a medical student. I received one hour of women’s sexual health training as an OB-GYN. Even as a woman, I didn’t realize this was an issue until after several years of practice. My patients were begging me for help and I had none to offer.
There is also a more insidious social problem to consider. I grew up knowing my grandmother wore daily panty liners for urinary incontinence and hearing about period pain, referred to as “Eve’s curse.” People of all genders have gender norms in which we are expected to conform and participate, and the traditional one for women is to grin and bear it.
While we can all agree objectively that this is absurd, this line of thinking is so deeply rooted in us as women (and expected of us by our non-female counterparts) that it often makes the idea of questioning these “truths” sound selfish, whiny, unnecessary, and weak. Do we think we are unique? This flawed thought process is demonstrated as compliance with the status quo that has plagued even me as a woman, an OB-GYN, and a women’s health advocate.
As a result of this historical ignorance of the many issues that affect women and their bodies, women have been suffering. As a physician since 2007, I have witnessed this silent suffering change to a growing roar. Women have voices, and we feel the power to use them. We share stories on social media. We visit our OB-GYNs and ask questions:
- How many years left do I have to have a baby?
- What is the best time in my cycle to strength train?
- Why am I so tired all the time?
- Why is all my hair falling out?
- What is going on with my period?
- Why is sex so painful for me?
And are met with far too few answers. This broken experience results in massive frustration for the patient and the physician. Patients want and expect their doctors to know more and do more, and their doctors need to include data and research to speak to these concerns in an evidence-based way.
The patient-driven solution
Hundreds of women’s health startups have popped up in response to this growing frustration rage. There is a clear market need for these solutions, and if medicine won’t address them and insurance won’t pay for them, then the private market will. You can find anything from supplements (for almost anything) to platforms that support women with PCOS, menopause, autoimmune disease, pregnancy, postpartum, and more.
As a founder in this space, most companies I am closely acquainted with have a heartfelt mission, either from the patient’s perspective or from someone who saw a genuine market need. However, funding is challenging for startups in women’s health. For conditions beyond oncology, women’s health receives only about 1% of the total venture capital funding that has been allocated to healthcare.
This creates an extremely tight budget for women’s health startups to educate the world, create a new market, develop a product or service, and market solutions to a previously unactivated audience. This leaves very little, if any, funding to create the research needed to support these interventions.
Unfortunately, this patient-driven approach often creates even more challenges in the patient-physician relationship because of the need for more data to support these interventions. Patients find out about these options and then ask their physicians about them, only to be met with no answers because, from a data perspective, those answers don’t exist. On the other hand, medical marketing without the necessary data to support interventions is seen by the medical community as predatory.
The result is an understandable but growing discontent between women’s health startups and the medical community that undermines our desired outcome: better health and care for women.
The collaborative solution
I propose that women’s health innovators and physicians meet in the middle. We agree that our system is broken and needs a path forward. This path includes both innovation and the data to support those interventions, and the two are synergistic.
Women’s health startups must include qualified medical professionals from the idea’s inception to when the idea turns into a company. This needs to be regular and ongoing, not just as an adviser ad hoc. These valuable professionals can answer this question: Does existing data support this approach? If not, what is the most efficient way to get some early validation and share that with the medical community? Does this marketing message drive a wedge between women and the medical system, or will it support the physician and the patient? The most successful examples of healthcare solutions have physicians and other healthcare “insiders” who understand the limitations and needs of the medical system from day one.
For those looking to connect with physicians interested in innovation, seek out innovation divisions of large academic hospitals, access one of the many groups of physicians interested in nonclinical work, and create and activate your network to make these connections happen. Physicians can be the door women’s health needs to have the success, credibility, and longevity it takes to win in this space.
To establish credibility within the medical community, start by sharing what is known in your space, illustrate your company’s hypothesis through storytelling, and work quickly to prove or disprove the theory. I’ve worked with grad students on required research using our internal data to generate and present numerous studies at a low cost. This relationship creates value for your company while offering these young professionals an opportunity to work with novel data in the startup environment.
Physicians also need to understand the world of startups and innovation for this to be successful. Our training must include paths that make it easier to support innovation if we want to successfully evolve the ecosystem to meet the needs of the patients we care for so deeply. This will require a complete mind shift for many of us. We are not “abandoning our patients” if we leave clinical practice — we are making our wholehearted attempt to serve women better, forever, to change how the world thinks about women’s health. Who better to support and lead that effort than OB-GYNs arm-in-arm with innovators and patients?
The best way to start this work is to reflect on the evolution from paternalistic medicine (a system in which doctors told patients what to do and they did it) to one of shared decision-making (where physicians present their knowledge and recommendations and patients decide what is best for them). We need this evolution outside the exam room in research, development, and innovation. We can rebuild women’s health to truly meet the needs of our patients (and ourselves) if we rewire how these systems work.
Women’s health, as it has existed for the past 200 years, is dead. One hammer for all of our problems will no longer suffice. Dismissing women’s suffering and pain because “that’s how we’ve always done it” has to be in our past. Patients must demand that their care be personalized, comprehensive, and, most of all, not paternalistic. They want to be heard, not comforted or placated. They want to be seen and have their specific needs addressed directly. Sadly, the way the old system was built did not give us the answers to these problems that face us today. We need to know more, and we need to know more now. To build effectively and efficiently, we must combine the patient’s voice with the relevant evidence to support proposed interventions.
Founders and physicians should not move forward with an “us versus them” mindset
The same system that failed women has failed the caregivers of these women. If we all take a breath and realize that we are working toward the same goals, then we can work collaboratively to achieve those dreams in a way that will continue to support women rather than undermining the work that both groups have dedicated their lives to. If physicians can open their minds and rethink their role in innovation, and startups involve the perspective of the physician in every decision from the beginning of their company’s journey, we can create the version of women’s health that we all want to experience and can set the standard for healthcare as a whole.
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