Starting from zero

If you could start from scratch, what kind of system would you design to serve the bleeding disorders community?Would you change the way you receive medical attention? Are you happy with the way product arrives at your home? What might you keep? What would you ditch?
The State of Connecticut is beginning to have a conversation that is very much like this. For people with a bleeding disorder in Connecticut, the State has paid little attention and has created few services for the community. That is why what happened in a legislative meeting room in Hartford last week was so impressive.
Community Members and Advocates, Hematologists, and Professional Staff sat down and began the process of considering how the bleeding disorders community accesses care from providers and the state’s public health agencies. The conversation that ensued was nothing short of landmark. I make this bold statement because a conversation like this which included represented “legislative officialdom” had not happened in the memory of any of the participants in the room.
There are no guarantees in life. There are even fewer given the current political environment. But the mere conversation discussing a forward looking attempt at securing the kind of care community members need is frankly a breath of fresh air given the budget blues around the country.
Hemophilia and vonWillebrand patients in Connecticut may not get all they need, in fact they might get very little. That said however, Connecticut’s experience this week serves as a much needed bright light for the rest of us. So, with all of this said, I ask you a few questions:
If you could start from scratch… what would you want?
What do you need?
Are “need” and “want” the same things…?
Are there institutions or services which community members depend on that we might improve somehow?
If we all were being we’ll served what would that look like? How would you know if you friend and family members were being well served?
How would you know if they were not being well served?
What can you personally do to change things for the better, for yourself, your family or your community?
The questions I pose above are the same concerns we sat with together as a universe of providers and advocates, mothers and daughters, brothers and uncles, fathers and sons. I share them with you, with an eye towards moving forward a conversation about what kind of community you wish to live in as we look towards a common future.
I encourage you to share your thoughts, questions, and concerns with HFA’s Office of Public Policy.  Your thoughts matter and I, Kisa and the entire HFA team are available to serve you. Your feedback is both welcome and appreciated.