In the 1980s and 90s, the focus of the bleeding disorder community was safer products, then more effective products, then prophylaxis. Mental health and substance abuse was not high on the radar, if at all.
While we enjoyed knowing that our children’s joints were protected and they could now not miss school and could play sports, a few people in the community realized that there were serious mental health issues to address as well.
One of these people was mom Kate Bazinsky, and in 2022, she helped to found the Bleeding Disorder Substance Use and Mental Health Access Coalition (BD SUMHAC). Their urgent question was: Why are people with bleeding disorders being denied access to inpatient and residential mental health and substance use treatment?
In the BD SUMHAC’s latest newsletter, she writes: “At first, we assumed the answer would be found in federal or state regulations. But through years of advocacy, policy analysis, and real-world casework, we learned something different and far more complicated.
Despite the fact that people with bleeding disorders are protected under federal disability laws, including the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, which prohibit discrimination on the basis of disability, there were barriers to access to care.
Kate writes: “Behavioral health facilities are granted significant discretion in determining whether they can safely meet an individual’s medical needs. When a facility claims that a person’s bleeding disorder is “too medically complex” to manage, the denial is often framed not as discrimination, but as a safety concern. Too often, these decisions are made without a true understanding of what it takes to manage a bleeding disorder
“Fear, unfamiliarity, stigma, and misunderstanding remain far too common.
“BD SUMHAC has made important progress on the policy front. We helped strengthen Section 504 regulations to require individualized assessments, worked with the American Society of Addiction Medicine to clarify in its Fourth Edition Criteria that people who require infusion medication do not automatically require the highest level of care, and supported MASAC recommendations affirming that people with stable, well-managed bleeding disorders should not be excluded from inpatient or residential mental health or substance use treatment.
“These wins matter. But they are not enough.
“We now know that policy alone will not solve this access problem. Real change requires equipping community members and providers with the knowledge, tools, and confidence to educate facilities, advocate during referrals, and respond effectively to denials.
“As we look ahead, our focus is shifting toward education, empowerment, individual advocacy, and sustainability. This means helping people engage their treatment teams early, often, and honestly, and ensuring they are prepared long before a crisis occurs.”
I think all of us in the community know someone with mental health issues. I know of too many young men with hemophilia who have committed suicide. It’s heart-breaking. But there is a huge movement to address these issues, not only at the personal level with HTC staff, but at the policy level, to change the system. That’s what BD SUMHAC is all about.
I urge everyone to receive their newsletter, to keep abreast of policy decisions that could impact each of us. And join their cause if you can. They are doing great work, and important work.
Sign up here: www.bdsumhac.org
