May is the month of Mother’s Day, and I want to highlight this week and next two very special mothers and their cause: mental health in those with bleeding disorders.
Those of us who had sons born in the late 1980s found that the community was focused intensely on the devastating impact of HIV. Children and young men who were infected were suffering and dying. When the blood supply was tested and cleaned; when ten thousand were gone; when the lawsuits settled… our community looked to making products safe. When that was accomplished, we looked at joint damage. When that was conquered and prophy became the norm, we had to deal with insurance issues—and still are.
What got overlooked among all the pressing issues? Mental health.
Any chronic disorder must be treated medically. But mental health is important as well.
This year, a mother from the New England area, Kate Bazinsky, announced a new program to address substance abuse in particular. New England has been hard hit with deaths from substance abuse in the general population. Pain and suffering from a chronic disorder like hemophilia, can lead to abuse as well. From Kate’s exciting email:
“The Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC) emerged from tragedy. A young man with a bleeding disorder facing a substance use disorder was repeatedly denied access to behavioral health facilities. Without access to the treatment he needed, he overdosed and died. His death shocked the bleeding disorder community, and exposed a critical equity gap in behavioral health access.
“In response, a team of passionate community members, representing both national and local bleeding disorder organizations, took action and BD SUMHAC was born. BD SUMHAC’s mission is to advocate for access to appropriate substance use disorder and mental health treatment facilities for all individuals with bleeding disorders, with a focus on inpatient and residential facilities. We provide resources, tools and advocacy for providers, people with bleeding disorders, and their loved ones.
“Join us in bridging gaps for the bleeding disorders community!
“Since day 1, the commitment and dedication of BD SUMHAC’s team members to breaking down barriers to behavioral health access has propelled the work forward at a remarkable rate. In its first two years, BD SUMHAC made presentations at more than fifty in-person and virtual events to raise awareness both inside and outside the bleeding disorders community. From its first meeting with ten people, BD SUMHAC has grown to over sixty team members from twenty-nine states united in mission and it’s making a difference.
“In addition to the lives that have been changed by this work, BD SUMHAC has made significant progress at the policy level. Visit the website to learn more about the impact we have had as a community!”
What a way to celebrate Mother’s Day by celebrating the achievement of this group in making a difference, for all sons, for all children, for all people with bleeding disorders and substance issues.
Congratulations to Kate and her team and happy Mother’s Day!
You can reach Kate at kbazinsky@bdsumhac.org
