Ask a Social Worker: How Can I Help Someone with Hemophilia Who’s in Prison?

Ask a Social Worker: How Can I Help Someone with Hemophilia Who’s in Prison?

Advice about medical care for incarcerated people with bleeding disorders.

Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected]

Dear Bobby,

A family member who has hemophilia was recently sentenced to a five-year prison sentence. Are there ways to help someone who is incarcerated receive medical care for their bleeding disorder?

Here are some statistics worth considering: At the end of 2020, there were a little over 1.2 million people held in state and federal prisons. Of these, nearly half of the inmates reported having chronic conditions before their entry into the system. Female prisoners were more likely than male prisoners to report a chronic condition; furthermore, Hispanic prisoners were less likely to give an account of their chronic medical issues.

Von Willebrand disease is the most common bleeding disorder, which is found in up to 1% of the U.S. population, and it’s estimated that roughly 22,000 men in the U.S. have hemophilia. However, we don’t know how many men and women with a bleeding disorder are incarcerated.

So, since hemophilia and von Willebrand disease are not common inmate medical conditions, it stands to reason that you and your family member are more likely to recognize how to address the matter than the guards and prison medical staff. Here are a few issues to consider: 

Ensure Continuity of Care During the Transition

When someone is first incarcerated, it’s important that the prison medical staff communicate with the hemophilia treatment center (HTC) staff and the primary care provider who managed your loved one’s care while they were in the community. The HTC staff can provide education to prison personnel so they can better understand your family member’s specific medical needs. This interaction will help ensure your loved one’s safety and avoid delays in treatment in case they suffer any injuries during their incarceration. 

Once a line of communication has been set up, opportunities related to bleeding disorders awareness may present themselves through discussions and distribution of educational materials for prison center staff.

Continually communicating with correctional nurses and relaying what they need to know about bleeding disorders will help patients the most.

A Good Relationship with Guards Matters

Guards are primarily focused on the safety of the inmates and the prison’s staff. Making sure there is clear communication between you and the guards about your loved one’s medical condition and the care that’s necessary may take away any risk of injury or delays in receiving care. 

Connect Your Family Member’s Lawyer with the HTC

It is advantageous to connect your family member’s lawyer with the HTC staff, as the lawyer will be able to provide an additional layer of advocacy support and ensure that the necessary care is provided. Furthermore, the lawyer can bring awareness to matters related to liability and the expense associated with caring for a person with a bleeding disorder within the prison system. Upon grasping the financial burden, prison officials may decide that it’s beneficial to transfer the inmate to a detention center that is closer to an HTC.

A transition into a restrained and unknown environment can be daunting; however, your family member’s HTC should remain as a resource that you and your loved one can continually draw upon for managing their care. At times it may appear hopeless, but these dedicated professionals are there to help serve patients’ medical needs, whether they are incarcerated or not.

 —Bobby Korathu, MSSA, LCSW

Korathu is a social worker at the Cardeza Foundation Hemophilia and Thrombosis Center in Philadelphia and a member of the Social Work Working Group. Lowery works at the UC Davis Hemostasis and Thrombosis Center in Sacramento, California. She is a member of the Social Work Working Group.