AFVLA Initiatives - How the Association is Advocating for You
AFVLA Knowledge is Power Initiative
Establishing broader testing guidelines.
The association realizes that testing for Factor V Leiden in asymptomatic individuals is very controversial and acknowledges the arguments put forth by both sides.
A recent consumer experience study has shown that over 80% of individuals who have tested positive for Factor V Leiden are satisfied with knowing that they have the gene mutation and over 77% feel that they have an advantage in knowing their genetic probability for developing a venous blood clot. Over 85% stated that they felt they could take steps to reduce their risk. Over 95% stated that if they could do it all over again, they would choose to learn about their genetic risk for a VTE. The public is receptive to being tested for Factor V Leiden and has a desire to know more about this disorder.
It is our viewpoint that preventative measures and counseling for someone with Factor V Leiden who has not had a venous blood clot cannot occur if the person does not know they have the gene mutation. Their lack of awareness, education and counseling about Factor V Leiden and the related risk factors puts them at a much greater risk for serious or fatal outcomes should an abnormal blood clot occur.
Based on that data, the American Factor V Leiden Association is working to assist in establishing new testing guidelines for Factor V Leiden.
The goal is to establish more precise and specific testing guidelines that take a common sense approach, are medically based given the latest research findings, and truly take into consideration the risks and benefits of knowing if you have the disorder.
Factor V Leiden Early Testing and RUSP Initiative
RUSP Testing for Factor V Leiden…
The association is examining whether the Factor V Leiden genetic test should be included in the Recommended Uniform Screening Panel (RUSP) also known as the newborn screen given to newborns. The association is investigating the risks and benefits of having the test included in the panel. The cost is minimal and having this information as part of the child’s permanent medical record and family history could prove to be invaluable for the child and their physician later in life. This is especially important if one or both of the parents carry Factor V Leiden and have experienced venous blood clots.
Factor V Leiden Awareness and The Use of Hormones Initiative
Women need to know…
About the risks of blood clots before starting birth control methods that contain estrogen, becoming pregnant, or starting hormone replacement therapy that contains estrogen. The association is working with the medical community to help healthcare providers educate their patients about the risks of blood clots.
Patients who are thinking about taking birth control containing estrogen especially need to be aware of the risks. Through education and awareness, healthcare providers and patients can together make an informed decision about being tested for Factor V Leiden.
Factor V Leiden CVST Research Initiative
The association plans to work with the scientific community to encourage more research with Factor V Leiden carriers who develop a cerebral venous sinus thrombosis (CVST) while taking birth control containing estrogen. The goal is to gain a better understanding of why the blood clots manifest in the brain versus the much more common deep vein thrombosis or DVT.
Factor V Leiden Innovative Treatment Initiative
New Effective Treatments…
Doctors generally prescribe blood-thinning medications called anticoagulants to treat people who have developed abnormal blood clots. People who have Factor V Leiden but have never had a blood clot yet have other risk factors are not routinely treated with medications. Thus, management of Factor V Leiden can be challenging. Sometimes over treatment can cause excess bleeding in the patient. The goal is to lower the chance of having a dangerous blood clot while still letting the body make the blood clots that are needed.
The association is working to encourage more research to find better and more innovative ways to predict and medically treat those with Factor V Leiden that have not suffered a venous blood clot but have additional risk factors. The goal is to balance the risks and benefits BEFORE an abnormal blood clot occurs.
Factor V Leiden Awareness and Education Initiative
Promoting Awareness and Expanding Education about this barely known but very common disorder…
Prior to the formation of the American Factor V Leiden Association in 2020, there was no organization exclusively promoting awareness or addressing the dangers of this disorder. Factor V Leiden was first identified in 1994 and thus, limited information about the disorder is made available or centralized in one place. Some in the general public and the medical community are misinformed about the characteristics of the disorder. There is also a lack of clarity concerning when to test for and how to treat those with Factor V Leiden.
This initiative will promote awareness and expand education about Factor V Leiden. It will empower people with FVL with resources they can use to help prevent venous blood clots before they happen and, most importantly, save lives.