Hormonal Therapies

Advocate for access to hormone therapies

Hormonal or hormone-based therapies are commonly prescribed as first-line therapy for menstruating people with bleeding disorders. HFA will robustly defend continued access to these and all other safe and effective therapies and services that people with bleeding disorders need.

Background

As advocates for people with bleeding disorders, HFA is following with concern the Supreme Court’s decision to remove federal protection for abortion health care in Dobbs v. Jackson Women’s Health Organization, and the still-evolving implications of that decision.

Hormonal therapies are particularly important to menstruating people with bleeding disorders. Many people with bleeding disorders worry that their access to these medically-necessary therapies may be blocked by state policies that wrongly categorize many forms of hormonal therapies as “abortifacients.”[1] Family planning is critical to many with life threatening bleeding disorders. Additionally, hormonal based therapies offer a cost-effective option to mitigate menstrual bleeding, which can lead to iron deficiency anemia and poor quality of life.

Key Principles

1. HFA’s bedrock principle is and always will be “access:” access to all safe and effective care and treatments for bleeding disorders, as well as access to the quality coverage that pays for such care.
2. Hormonal therapies are used for a variety of reasons and are commonly prescribed and used as safe and effective first-line therapies for menstruating people with bleeding disorders.

Facts About Hormone Therapies and Their Roles in Treating People with Bleeding Disorders

• Common bleeding disorders include von Willebrand Disease, hemophilia, qualitative platelet disorders, etc.
• 1 in 5 women have heavy menstrual bleeding (menorrhagia).
• Heavy menstrual bleeding affects 27-54% of people who menstruate.
• Heavy menstrual bleeding can lead to iron deficiency anemia.
• Every person with a bleeding disorder is unique and requires specialized treatment.
• Women with bleeding disorders are diagnosed on average 16 years later than men.
• Lack of a timely diagnosis puts women with bleeding disorders at greater reproductive risk.
• Hormonal therapy is a common treatment for people with BDs who menstruate and is commonly recommended as first-line therapy.
• Hormonal therapy can take different forms, including: the pill, IUD, implant, patch, injection, vaginal ring, etc.
• Hormonal therapy can reduce heavy menstrual bleeding and the frequency of bleeding.
• Some patients use a combination of hormonal therapy options to achieve their goals.
• Younger affected girls can face a social stigma for using hormonal therapy at a young age comparatively.
• Heavy menstrual bleeding at menarche (first period) is a common initial bleeding symptom in those with a bleeding disorder (53% of women).
• Reducing access to hormonal therapy could be dangerous for individuals with bleeding disorders.
• Stopping hormonal therapy abruptly can increase bleeding leading to hospitalization.
• Menstruating people with rare bleeding disorders have few available treatment options and are especially reliant on hormonal therapies.

What Can You Do?

Educate yourself about your diagnosis and your treatment options including, if applicable, hormone therapies: how they work and how they may be used to help control menstrual bleeding.

• Understand your rights to coverage for reproductive care. Under the Affordable Care Act, most health plans are required to provide at least one form of all FDA-approved contraceptive methods used by women, including hormone therapies, with no cost-sharing. (Note, however, that the Supreme Court has ruled that employer-sponsored health plans may claim exemptions from the ACA’s contraceptive mandate on religious grounds.)
• If you are having trouble getting access to your hormone therapy, we want to know! Please contact us at advocacy@hemophiliafed.org. We may be able to help you navigate your access issue – and your story helps HFA be a better advocate for all.

Resources

Hormonal Therapies ≠ Abortion

• “Contraception is Not Abortion,” Guttmacher Institute Policy Review
• “How is Birth Control Different From an Abortion,” WebMD

Know Your Rights: Insurance Coverage

• Healthinsurance.org’s guide to women’s health insurance in 2022
• National Women’s Law Center website, coverher.org
• U.S. Department of Health and Human Services (HHS), reproductiverights.gov

Bleeding Disorders Education

• HFA Learning Central “Women’s Health and Wellness” courses
• HFA: Blood Sisterhood program
• NHF: ‘Current Therapies’ 
• NHF, 2018: “Advancing Care for Women with Bleeding Disorders”
• U.S. HHS Office on Women’s Health: Bleeding Disorders
• U.S. HHS  Office of Women’s Health, 2017 fact sheet

Hematology/Obstetrics

• American Society of Hematology, 2018: “Evaluation and Management of Heavy Menstrual Bleeding in Adolescents”
• The American College of Obstetricians and Gynecologists, 2021: “Von Willebrand’s Disease in Women”
• NIH, National Library of Medicine, 2019: “Abnormal Uterine Bleeding in Young Women with Blood Disorders”
• Cleveland Clinic: “Heavy Menstrual Bleeding”

[1] By definition, an abortion ends an established pregnancy. Hormone therapies, by contrast, prevent pregnancies from happening in the first place.