March marks Bleeding Disorder Awareness Month, drawing awareness to the estimated 3 million people impacted by bleeding disorders nationwide. One UMass Memorial Medical Center caregiver is taking the mission even further and is working to break down access barriers for people living with substance abuse and/or mental health needs and bleeding disorders after seeing one of her patients impacted.

“I met Derick when he was 14 years old. I was months into my role as the nurse coordinator for the New England Hemophilia Treatment Center (HTC), and Derick was just getting into what would become a cycle of substance abuse, self-medicating to cope with a history of mental health issues,” said Jennifer Feldman, MSN, RN, Clinical Nurse Coordinator at the New England Hemophilia Center at UMass Memorial Medical Center. “When Derick was ready for help, I reached out to several substance use disorder and behavioral health facilities throughout Massachusetts and was essentially told the same thing each time: Derick was not eligible for placement due to his hemophilia. Facilities were not able to assume the liability associated with having a patient who required intravenous infusions to treat his underlying medical condition. Derick died of a drug overdose months later. He was 20 years old.”

Hemophilia is an inherited bleeding disorder in which the blood does not clot properly. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. It is caused by a mutation in one of the genes that provides instructions for making the clotting proteins needed to form a blood clot. Treatment entails replacing the missing protein either prophylactically or as needed when bleeds occur.

After Derick’s death, Jennifer acted. She reached out to New England Hemophilia Association (NEHA), a nonprofit advocacy and support organization for patients and families with bleeding disorders (BD). NEHA brought together the Hemophilia Federation of America, the National Hemophilia Foundation, HTC providers, other chapters, and bleeding disorder community members to establish The Bleeding Disorder Substance Use and Mental Health Access Coalition (BD SUMHAC), of which Jennifer is a co-founder. This coalition advocates for access to appropriate substance use and mental health treatment facilities for all individuals with bleeding disorders.

She also found out Derick’s case was, tragically, not unique. In a national survey of HTC social workers conducted by BD SUMHAC, 83% of those that had attempted to secure placement for their BD patient at an addiction treatment facility or mental health facility, failed. The coalition connected with The American Society of Addiction Medicine (ASAM). The current ASAM edition is restrictive when it comes to individuals who infuse medications, which leads to the patient population being denied admission. Their goal is to see the ASAM guidelines changed in the 4th edition to be inclusive of individuals with bleeding disorders.

So far, the coalition has developed a best practices toolkit which helps identify common themes among those providers who had successful referrals, gathered resources that can help caregivers determine the appropriate level of care needed and resources for providers including language to assure the facility that the patient can be safely admitted, and developed information on how to respond to a denial. The coalition submitted a stakeholder feedback survey to ASAM regarding potential changes to the ASAM Criteria. In follow-up to this submission, the coalition developed materials that will serve as the basis of the guideline changes and support the facilities as they admit patients with bleeding disorders.

“Patients should not be denied access to treatment due to their bleeding disorder,” Jennifer said. “Through the coalition, Derick’s legacy lives on. His story inspires us every day and is a reminder of what needs to change. His death was preventable, but the system was inflexible. Our goal in the future is to change that inflexibility and make a difference in the lives of all our patients.”