Currently, there are over 167.5 million women (including individuals who identify as women or have the propensity to menstruate) living in the U.S. An estimated 3% of them are living with a diagnosed inheritable blood or bleeding disorder – and certainly many more are living their daily lives with pain and bleeding but are undiagnosed. Recent changes in access to women and girls’ health care are likely to have detrimental effects for the blood and bleeding disorders community.

The National Hemophilia Foundation (NHF) believes that health care decisions should be between an individual and a medical provider through education and shared decision-making. Treatments and medical interventions for these individuals often include necessary hormone treatments such as various forms of birth control. For many living with a bleeding disorder, hormonal therapy at a young age isn’t about preventing reproduction – it’s about treating disruptive bleeding.

NHF is steadfast in its commitment to women and girls with bleeding disorders, as well as the need for equitable and just health care. As many women in the community have personally experienced – reproductive and sexual health care is a critical component of bleeding disorder management. In fact, some women have found it’s the only option for safely treating their bleeding disorder. Clinical consultations with evidence-based information to prevent severe, lasting hematologic complications and protect the life of the mother are critical.

NHF generally agrees with the below principles recently shared by the American Society of Hematology.

  • Maternal health can be adversely impacted by hematologic diseases and disorders
  • Termination of a pregnancy is an important clinical consideration when the mother is at risk for serious health complications and/or death
  • Access to evidence-based medical information and lifesaving medical options [procedures and treatments], is a maternal right

Like so many other aspects of the health and well-being of women and girls with bleeding disorders, the right to access the appropriate care is made by a health care provider and a patient and is rooted in health equity and justice — one of NHF’s top priorities to better serve all those impacted by inheritable blood and bleeding disorders.

The Medical and Scientific Advisory Council to the NHF is committed to ensuring that the relationship between the physician and patient, including the ability for physicians to offer medically appropriate and life-saving treatments, including hormonal treatments and even in certain situations, abortion, must be protected and preserved. Considering this, no individual or physician should face legal ramifications for health care decisions/treatments. The right to maternal health, life, and access to life-saving treatments, must be preserved.