STEVE’S ANSWERED THE CALL, AND HE’LL DO IT FOR US…
In the immediate aftermath of 9/11. Steve began a fellowship through the New York State Senate, where he was assigned to the staff of a State Senator from Bensonhurst in Brooklyn. Among Steve’s daily responsibilities was to support families of people who lost loved ones in the pile at ground zero. This is where Steve learned the truer meaning of duty, caring, compassion. His work brought him face to face with grieving families who lost sons and daughters, mothers and fathers, brothers and sisters from all walks of life. Steve would end his time in Albany & State Government, coming to Vermont, attending UVM, and earning a second master’s in Social Work in 2004.
Steve has worked in a variety of settings through graduate school and right on into his working life, primarily with addicts and alcoholics and their families. He has been staff in community mental health facilities, in a detox, and Steve has been on the front line in methadone clinics. Steve has been a counselor in a residential treatment center. No provider in Vermont can speak with greater authority on the opiate crisis than can Steve May. Steve took a sabbatical from his therapy work to accept positions first as the Director of Advocacy for the New England Hemophilia Association. Then, he went on to accept a promotion as the National Director of State Affairs for the Hemophilia Federation of America.
In these roles, Steve helped address the historic mistreatment of the Bleeding Disorders communities by the Federal Government and Pharmaceutical Industry. What Steve discovered was a rare disease community that was exploited beyond what could and should have been permissible across time and decency. These wrongs had consequences well beyond Bleeding Disorders. Steve supported the chapter organization’s around the country responsible for running their own public policy and advocacy programs. Often this involved fighting over insurance or drug coverage, and access to care issues.
Steve’s work in bleeding disorders ultimately led him to create a new nonprofit called the Forum on Genetic Equity. Steve worried that the threat of genetic bias and misappropriation was growing. That meant that people could use genetic information for all kinds of reasons without permission. Steve saw the threat of direct to consumer genetic testing and privacy issues. That was almost a decade ago. Steve worried about who controlled one’s own health information, if you had a Fitbit and it was provided by a life insurance company… could it be used in underwriting? Steve was asking these questions a decade ago. Steve knew then that privacy was and is the next great emerging Civil Rights concern of our time.
That’s Steve & that’s Leadership for extraordinary times…