Today, I had the honor of sharing my stroke story and testifying in support of a bill I created aimed at reducing strokes and blood clots in women. For those interested in understanding the argument I presented, I'm sharing my written testimony. While the actual testimony I gave was slightly abbreviated due to time constraints, the essence remains the same. My testimony sheds light on why I have been so determined in advocating for better screening for Factor V Leiden, a genetic mutation that makes one's blood more prone to clotting, before women are prescribed hormonal contraceptives like the birth control pill. I want to sincerely thank Massachusetts Representative Dan Ryan, Sean Getchell, Representative Ryan’s Staff Director, and Allyson Perrone Drag, Government Affairs Director for the American Heart Association, for their years of support on this life saving bill.
If you've ever been curious about the story behind my advocacy, or if you're interested in learning more about this crucial yet often overlooked health issue, I invite you to read on. Let's work together to make informed healthcare choices that can potentially save lives.
My Written Testimony:
I stand before you not only as a proponent of this bill but also as a stroke survivor who experienced a life-altering event at the young age of 36. At that time, I was temporarily paralyzed on the left side of my body due to a stroke. With a two-year-old and an almost five-year-old at home, the experience was both shocking and devastating. A major contributor to my stroke was a genetic blood clotting disorder called Factor V Leiden—a disorder of which I was previously unaware. Today, I am here to advocate for the implementation of routine screening for Factor V Leiden, particularly before prescribing hormonal contraceptives to women.
My aim is not to dissuade women from using birth control. Instead, it's about ensuring that women are provided with complete information about potential risks. This is about informed choice.
Factor V Leiden is a genetic mutation that makes blood more prone to clotting, thereby increasing the risk of developing abnormal blood clots in veins and arteries. Estimates indicate that 5-8% of the population may have one or two copies of this gene, yet many remain unaware because routine screening is not a common practice. This lack of awareness is concerning, especially since Factor V Leiden, under certain circumstances, can trigger life-threatening clots.
What are these triggers? They are not rare or unusual, they are everyday events like pregnancy, surgeries requiring prolonged immobility, long flights, and notably, the intake of hormonal contraceptives. My aim is not to dissuade women from using birth control. Instead, I seek to ensure that women are provided complete information about potential risks, empowering them to make informed choices.
I urge medical professionals to adopt a comprehensive approach when prescribing hormonal contraceptives. A simple blood test, or even a saliva test—like those offered by companies such as 23andMe—can identify the presence of Factor V Leiden. Armed with this knowledge, physicians and patients can make decisions that prioritize the patient's health and safety.
It's alarming how many individuals, including medical professionals, are unaware of Factor V Leiden despite its potential ramifications. We need more education and proactive screening. I personally know too many women who have suffered health events, including strokes and blood clots, due to Factor V Leiden's interaction with contraceptives. Tragically, some of these cases have been fatal.
It's important to underline that the medical community is not in dispute about the correlation between Factor V Leiden and the heightened risk of blood clots when taking oral contraceptives. If a woman is known to have Factor V Leiden, physicians most often choose not to prescribe birth control pills due to this elevated risk. This consensus illuminates the gravity of the situation. A critical question arises: If doctors universally recognize the dangers when they know a patient has Factor V Leiden, why isn't routine screening implemented before prescribing hormonal contraceptives? Ensuring that women are aware of their genetic predispositions should be a fundamental step in the prescription process, similar to other preventative health measures.
A 2002 study in the journal "Arteriosclerosis, Thrombosis, and Vascular Biology." This study observed the relationship between Factor V Leiden and the heightened risk of blood clotting, particularly when combined with hormonal therapies like oral contraceptives. The study called for an urgent need for screening given the significantly elevated risks.
While the World Health Organization's recommendations from 2009 to 2016 clearly state that the use of combined oral contraceptives is associated with an unacceptable health risk for women with hereditary thrombophilias like Factor V Leiden, it's alarming that we're relying on data that is years old. One must consider the advances in medical science and diagnostics that have occurred since then. We need updated, comprehensive studies to better understand the nuances and to guide healthcare providers in making the most informed decisions for their patients.
I fully acknowledge the concerns raised in prior testimonies: the percentage of women who may face complications due to Factor V Leiden and birth control is relatively small. However, my focus is singular: to protect the subset of women who, unbeknownst to them, carry the Factor V Leiden mutation and are thereby at an increased risk of experiencing a potentially life-threatening health event. Every woman deserves to understand the level of risks she may be taking with any medical treatment, especially if those risks could result in a stroke or be fatal.
While the affected demographic may be small, the potential consequences for this group are life-altering. Every woman should be equipped with complete knowledge of her unique risks, enabling her to make informed decisions about hormone-free contraceptive alternatives or other medical paths.
Consider this: If a preventable stroke or blood clot were to affect your daughter, sister, niece, or any cherished woman in your life, wouldn't you wish you had done everything possible to prevent it? Every life is valuable, and every potential tragedy that can be prevented is worth the effort, no matter how small the group may appear in the vast sea of statistics.
In conclusion, this bill is about safeguarding the women in our community. It's about preventing avoidable tragedies. I sincerely ask for your support in the cause of education and screening to ensure that no one else suffers needlessly due to a lack of awareness about Factor V Leiden.
