Invisible Women: Gender Gaps in Health

• It takes an average of 8 years to be diagnosed with endometriosis.
• Over the past 40 years, the incidence of lung cancer has increased by 84% among women, while it has decreased by 36% among men.
• The risk of misdiagnosis of myocardial infarction is 50% higher in women.
• Women scientists are 35% more likely than men to develop treatments benefiting women, but only 13% of patent holders are women.
• Women with type 1 diabetes are 37% more likely than men to die from secondary complications.
• Black women have 41% higher breast cancer mortality than white women, even though they represent only 6% of clinical trial participants.

Here are some of the surprising figures that were presented at Roche Press Day, which this year had the central theme: Women, health and equity. And – as experts have said – for too long, Science has primarily focused on men and viewed them as the “default human being,” underestimating women and leaving them aside. As a result, women today face inequalities in treatment, care and access to healthcare.

So, just as there is a wage gap between men and women, there is also a huge gap in scientific data and information associated with women’s health. “When we talk about equality, we refer to equal access and the same opportunities in different fields, similar treatment, the same pay for the same work, but Biologically, there are important differences between men and women that have historically gone unaccounted for and that profoundly affect women’s lives. says Gabriel León, scientist and science communicator in the chapter Invisible women from his Pop Science podcast.

Virginia Cozzi Vilches is Head of Clinical Operations at Roche CACV. He assures that an active and systematic process is necessary to detect and address these differences, and that for this, biomedical research with a gender perspective is essential. “This is what allows us to have medicines, medical devices, vaccines, etc., and involves the participation of people at some point in the development of said medicines or medical devices. However, since James Lind carried out the first clinical trial in the history of medicine, the lack of participation of women has been just as significant,” she explains.

It is not a coincidence. It was the FDA itself (United States Food and Drug Administration Agency) which published a guideline in 1977 recommending the exclusion of women of reproductive potential from early phase clinical studies. “It was thought that the research was neutral or that women were a confusing variable; “That with our hormones and our ‘weird’ enzyme activity, we have altered the results of clinical studies,” explains Virginia.

Then, in 1985, driven by the emergence of HIV, women began demanding participation in medical studies, and in 1986 the NIH (US National Institutes of Health) promoted a policy to encourage researchers to include women in clinical studies, even if it was only a recommendation.

It was not until 1991 that a series of clinical trials were carried out on 150,000 women, during which sufficient information was obtained, for example on how women metabolize drugs and how diseases behave within us. This led the FDA to produce a new guide in 1993 for the study and evaluation of sex differences in biomedical research, which reversed its 1977 position. Sixteen years later.

Virginia Cozzi assures that this lack of representation of women in clinical studies has had catastrophic consequences. “Today we know that women are twice as likely to suffer side effects from any medication; We metabolize medications more slowly, so they tend to linger in our system and build up in the liver and kidneys. In summary, we know that anatomical and metabolic differences between men and women (and also between women themselves) affect drug pharmacokinetics.

So, in a world dominated by male views, it seems inevitable that things will end up harming women. Some may be anecdotal, but when it comes to medicine, the problem is more complex because our lives are put in danger. “In the imagination of what a heart attack is, we have the idea of ​​a man who complains of pain in his chest and left arm. These are the typical symptoms of a heart attack, which we have always seen in cinema and television. However, women experience different symptoms, with a lower frequency of chest pain and sweating than men. This has led to heart attack symptoms in women being described as “unconventional.” A curious definition, considering that these are typical symptoms of a heart attack for half of the world’s population. explains León in his podcast and adds that in many cases the symptoms in women are not recognized in time or are confused with a panic attack, which could explain why the chances of surviving an attack, in the case of women, they are better when accompanied by a woman.

For Virginia Cozzi, it is necessary and urgent to carry out inclusive research which makes it possible not only to identify the differences between men and women, but also the differences between women themselves, and to guarantee that the determining factors are taken into account. social. “Being a woman of Spanish nationality, who works in an office, is not the same as being a woman who lives in Trinidad and Tobago, who is of African origin, who has another type of profession and another type of diet. Cultural factors are also important for clinical research,” he says.

And he adds: “Not only the people who carry out clinical research must be part of it, but all the professionals who have something to do with it: social workers, psychologists, anthropologists, who, from the point of view of “gender, we are capable to propose research that gives us data not only from a biological point of view, but also from a social point of view, since we find determinants that modify the response to drugs.

To explain this, we recount the case of an Argentinian doctor who treated a 59-year-old patient with diabetes. Her illness was not going well and when she went for a check-up and the doctor asked her if she was doing any physical activity, she was silent for a few seconds and said: “My daughter has separated, she came back to live with me, now I’m taking care of my grandchildren and I don’t have time. » To do sports, I had to stop. This social factor influenced the deterioration of his diagnosis.

“In medicine, we often make the mistake of taking these social variables as operational elements, but from my point of view, it is super important that when we design studies, we consider these variables, not as an operational variable but as an operational variable. analyze. To what extent do variables that are not strictly biological affect research results? How do environmental factors define a person’s response to a drug? “It’s something we need to look at.” adds Virginie.

And fairness and equality in clinical trials is not only a matter of social justice but also of scientific necessity. Omission of underrepresented populations in clinical trials could limit the development of innovative medicines addressing the unmet medical needs of these populations.

According to Virginia, updating the regulations is essential. “Our countries (in Latin America and the Caribbean) continue to demonstrate the 1977 FDA position regarding the participation of women in clinical studies, and this is a situation that we must reverse. Secondly, education and updating on these subjects of health personnel, but especially of bioethics committees which have the possibility of approving or rejecting research if women are not taken into account. We must move towards more inclusive research” said.

And finally, consider the vision of a patient in a clinical study. “We always talk about patients, but we rarely take them into account in research. It is something that has started to be integrated, but it must be considered systematically. I remember a while ago we did a study on arthritis deformans, and as it progressed, we started seeing women who reported not taking medications. We started to investigate what was happening and it turned out that when we questioned the patient, she told us: “I have deforming arthritis, I can’t open the bottle. If my son doesn’t open it for me, I can’t take the pill. This led to a change in the presentation of the medicine that allowed patients to open it. But if we had had this patient from the beginning, when the study was planned, this would not have happened. This is a small example of many things happening. This is why it is important and necessary that we conduct more inclusive research,” he concludes.