Improving menstrual cycle tracking for better care and privacy
The HFA has developed new tools for this purpose that you need to know
During my teenage years, I vividly recall attempting to convey the severity of my menstrual bleeding to a male hematologist. I described my bleeding by giving examples of the products I used, such as “superplus tampons” and “overnight maxi pads.” He couldn’t relate.
In a somewhat perplexed tone, he even asked, “How does this correspond to my child’s diapers?”
It became glaringly apparent that we had a pressing need for a standardized way to communicate menstrual flow. At that time, such a common language simply didn’t exist. Establishing one would help in three ways:
- Understanding normalcy
- Diagnosing heavy bleeding
- Assessing treatment effectiveness
“Understanding normalcy” allows women and girls to gauge whether their menstrual periods fall within the realm of normalcy or if they should seek medical attention.
“Diagnosing heavy bleeding” ensures people receive the appropriate care and attention.
“Assessing treatment effectiveness” assists healthcare providers in evaluating therapeutic plans that apply to bleeding disorders.
Recognizing this need, the nonprofit Hemophilia Federation of America (HFA) in 2014 took a proactive step by introducing the Blood Sisterhood app. It was designed to cater to the specialized needs of women with bleeding disorders by serving as a comprehensive tool for tracking menstrual flow, treatment regimens, and pain levels. The information collected could be easily shared with healthcare providers, fostering better patient-provider communication and care.
Changes were needed
On June 24, 2022, in a deeply controversial ruling, the U.S. Supreme Court overturned Roe v. Wade, reversing a previous decision ensuring that women had a constitutional right to abortion. Because of this ruling — in a case known as Dobbs v. Jackson Women’s Health Organization — and because of concerns about privacy, the HFA decided to discontinue the Blood Sisterhood app.
During a recent Zoom meeting, HFA Blood Sisterhood Manager Jeanette Jones and her colleague, Institute Director Lori Long, were kind enough to explain to me their privacy concerns and demonstrate a new toolkit the HFA developed.
“We are concerned about period data being used harshly against women,” Jones said.
She explained that period tracking data could be subpoenaed by a court and exploited to draw conclusions about an individual’s reproductive choices, including the possibility that a person had had an abortion. Under some new state laws, this information might be used against them in a harsh and punitive manner.
The new toolkit was introduced during the 75th Annual Bleeding Disorders Conference, held Aug. 17-19 in National Harbor, Maryland.
New tracking tool
The toolkit has been thoughtfully crafted by considering input from users of the now retired Blood Sisterhood app. Its features, Jones explained, are designed with the user’s convenience, privacy, and healthcare in mind, aiming to enhance communication with healthcare providers and ultimately improve the quality of care.
Users have the flexibility to choose their preferred method of data tracking, whether it’s digital or on paper. This information can then be shared with healthcare providers to facilitate more productive conversations, which ideally will lead to more effective care.
Jones emphasized the importance of accessibility. Printed blank logs can be distributed at OB-GYN offices, hemophilia treatment centers, or by any medical provider. These methods ensure that those without readily available electronic devices can still benefit from the resource.
Ways to track
Two distinct tracking methods are available:
- The traditional method of counting products, in which users count the menstrual products used.
- Measuring volume loss, which allows users to quantify their menstrual flow in terms of volume, enabling a precise assessment of changes over time.
This approach strikes a commendable balance between safeguarding women’s privacy and furnishing them with indispensable options for managing their healthcare effectively. It’s a laudable initiative by Jones, Long, and the HFA that empowers women to take control of their health and well-being. Their commitment to addressing the specialized needs of women with bleeding disorders is praiseworthy and will undoubtedly positively affect the lives of many.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
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