The State House and Silver Linings. Today is a very special day. Today, I submitted a Bill at the Massachusetts State House to help prevent strokes in Women. This is something I am passionate about and something I have been working on for years. This is a bill that would ask doctors and health care providers to administer a blood test to women to see if they test positive for a blood clotting disorder, called Factor V Leiden, prior to women being put on birth control. Women who have factor V Leiden (FVL) are at a significant greater risk for a stroke when taking birth control pills. Factor V Leiden can also increase the risk of stroke during pregnancy and for a period of time post-partum. As of today, there is no existing set policy for screening women for FVL prior to giving them birth control pills. Today, with the support of Allyson Perron, Government Relations Director for the American Heart Association, and Massachusetts State Representative Dan Ryan this bill is being introduced. A big thank you to Sean Getchell, Representative Ryan’s aid, for the years and years he has spent listening to me talk about this, and to Allyson Perron who has also spent years helping me but this Bill together. This Bill still has a long way to go, but it is a start.
Do you believe in silver linings? I do. They are hard to spot, especially when you are right in the middle of something tragic, awful, or unfair that feels like is just happening to you. But I have found, that even in the worst of the things I have been through there are silver linings, small lessons (blessings) that appear. And that difficult and challenging times are often opportunities to either learn, grow, or transform in someway for the better. The stroke that I had almost 6 years ago was caused by a blood clot that went to my brain. It was terrible. In the first few days post stroke, I could never imagine finding anything positive coming from going through that experience. I was devastated and very scared those first few weeks and months after my stroke. I went through a lot of medical tests to determine what specifically may have caused my stroke. I found out I tested positive for a blood clotting disorder called Factor V Leiden. I had never heard of it before and knew nothing about.
The Silver lining in my stroke: When I found out I was factor V Leiden, my hematologist let me know this was a genetic mutation and likely my parents and siblings might also have Factor V Leiden. FVL on its own may never cause any health issues but certain events can activate the gene to accelerate blood clotting and include having surgery, physical traumas/injuries, being immobile for a period of time, taking hormones (e.g. oral contraception, estrogen, hormone replacement), and pregnancy. This news took my breath away. I instantly thought of my sister Mary, she was a few months pregnant with her first baby. Mary had just gone through IVF, which included a few months on birth control pills and had been injected with a lot of hormones during two rounds of IVF. I left my hematology appointment and called my sister. My sister went into to her OBGYN and got a factor V test and she found out she had it too. My sister was immediately put on daily blood thinning injections to prevent clotting and possible stroke, or worse loosing the baby. Mary was on the daily blood thinner injection for her entire pregnancy and 6 months after having the baby. Today my beautiful sweet niece is 4 1/2 years old. I always say finding out I was factor V through my stroke and subsequently my sister finding out, especially after being on all those hormones, plus being pregnant, is the silver lining to my stroke.
Once I learned what factor v was and what it could cause, I knew I wanted to raise awareness to help prevent future strokes in women. I approached the American Heart Association about the idea of creating a Factor V bill about 4 years ago. And ever since we have been slowly working together, researching and speaking to experts and today I am thrilled this bill as been introduced.
Factor V Leiden (FVL) is a 20,000-year-old mutation of one of the clotting factors In the blood and a major genetic risk for thrombosis (blood clots). According to the Journal for the American Society of Hematology, women with heterozygous FVL that take oral contraception have a 30-50% increase risk of developing blood clots. It is the most common genetic cause of primary and recurrent venous thromboembolism in women. Studies have shown that taking estrogen can increase the risk of blood clots, stroke, and heart attack in women. And estrogen, when taken by someone with FVL, can significantly increase the risk of blood clots. Whether women are taking synthetic estrogen in the form of oral contraceptives, or hormone replacement therapy or have increased concentrations of the endogenous estrogens due to pregnancy, they are at much greater risk of clotting FVL Accounts for 20-50% of the venous thromboembolisms (VTE) that are pregnancy related. In the United States, VTE is the leading cause of maternal death (Journal of American Family Physician 2008). In addition to causing VTE in pregnant women, FVL has been linked to miscarriage and preeclampsia.
More About Factor V from another stroke survivor and researcher posted on hormonematters.com:
What Women Know about Birth Control and Blood Clots
Part of my thesis research included a survey to assess what women understand about the risks of birth control pills and clotting disorders. Over 300 women who had taken birth control pills participated. What I found was that most women do not understand the side effects of hormonal birth control, nor are they familiar with the symptoms of a blood clot.
As for clotting disorders, nearly 60% of the women surveyed had no knowledge of these conditions. When asked whether they knew about clotting disorders BEFORE they took birth control pills that number increases considerably.
Over 80% of women were taking a medication without the knowledge that they could have an undiagnosed genetic condition that would make that medication exponentially more dangerous.
This shouldn’t come as much of a surprise give that this information is not found in advertisements for birth control pills, on non- profit websites about birth control pills and their risks, or on literature provided with the prescriptions.
Why Aren’t Women Tested for Clotting Disorders?
The most common reason I found in my research for not testing women were cost-benefit analyses measured in cost per prevention of one death.
Setting aside the moral argument that you cannot put a price on a human life, because clearly the government and corporations do just that. (It’s $8 million in case you were wondering.) The cost of taking care of taking care of victims of blood clots is not insignificant.
Each year thousands of women using hormonal contraceptives will develop blood clots. The average cost of a patient with pulmonary embolism (PE) is nearly $9,000 (for a three-day stay not including follow-up medication and subsequent testing).
A hospital stay as a stroke patient is over twice that at nearly $22,000 (not including continuing out-patient rehabilitation, medications, testing, etc.). As a stroke survivor, I can tell you that the bills don’t stop after you leave the hospital. I was incredibly lucky that I only needed a month of out-patient therapy. Most patients need considerably more and will require life-long medication and testing. It’s important to note that due to the increasing cost of healthcare, the figures in these studies (PEs from 2003-2010; strokes from 2006-2008) would be exponentially higher now.
I’m not a statistician but I can do some basic math and while I wasn’t able to find data for the United States (surprise, surprise), the health ministry in France recently conducted a study that showed that the birth control pill causes 2,500 blood clots a year and 20 deaths. The United States has 9.72 million women using the pill compared to France’s 4.27 million. This doesn’t include the patch, ring, injectable, or hormonal IUD, but for the sake of keeping things simple, let’s just use the pill. So we have over twice the pill-users as France, which means twice the blood clots (5,000) and twice the deaths (40). If we assume that half of the blood clots are PE and half are stroke, we come up with a whopping $77.5 million in hospital bills for these blood clots (not counting life-long treatment). Now adding the cost-of-life determined by the government (40 women times $8 million= $320 million) and we end up with nearly $400 million a year in damages caused by the pill. For the cost of only one year of damages, all 10 million women could have a one-time $40 blood test which would result in considerably fewer blood clots.
Furthermore, the research in my thesis shows that women would be willing to not only take these tests, but also to pay for them!
Of the 311 who answered the question, 82.3% (or 256) said they would be willing to take the test. Only 7.2% said no, with the other 10.6% “not sure.” More than 60% of respondents would be willing to pay for the test (up to $50).
In addition, the cost of a blood test is directly proportional to how frequently it is performed. An increase in testing will result in a decrease in the cost of testing.
Women Deserve Better
Putting aside the monetary costs for a moment, what about the emotional and physical toll for women who suffer these dangerous and debilitating blood clots? There is no excuse for women to suffer strokes, pulmonary embolisms, DVTs, multiple miscarriages, and still births because they have an undiagnosed clotting disorder.
That said, requiring a test before prescribing hormones to women would raise awareness of the dangers of these drugs and may reduce the overall number of women using them. Which leads one to wonder if the absence of testing for women is really just a public relations strategy.
Perhaps one of the most devastating cautionary tales of not testing for clotting disorders comes from Laura Femia Buccellato. Her daughter Theresa was 16 years old when she was killed from a blood clot caused by (undiagnosed) Factor V Leiden and birth control pills. Would Theresa be with us today if she had had a simple blood test? Would I have had a stroke? When we will demand better?