DECLARATION of INDEPENDENCE FROM SICKLE CELL DISEASE
I was honored to speak at the Sickle Cell Consortium meeting in Atlanta this month. I spoke at length with several patients and they are rightly demanding change. I sense a more empowered tone to these voices than I have heard over the 5+ years I’ve been fortunate enough to work with this community. I want to add my voice to theirs, to the building chorus demanding change.
DECLARATION of INDEPENDENCE FROM SICKLE CELL DISEASE
We will live.
We will celebrate lots of birthdays and experience a different kind of crisis -- our mid-life crisis!
We will not feel so much pain.
We will have the pain meds we need to make our excruciating crises more manageable more quickly.
We will be treated with dignity and empathy.
We require the ER will treat our condition like the emergency it is--because the pain is unbelievable.
We will not live with the stigma or the preconceived notions the ER staff have about us – they don’t know us.
We will not encounter another hospitalist who asks us how long we've had sickle cell disease.
We will be able to see a hematologist – no matter where we live.
Until there’s a sea change, we will stay with the children's hospital we grew up in, and with the doctors and nurses who know what medicine to prescribe and how much of it -- and know us.
We will be treated holistically – not just in times of crisis.
We will be seen for who we are – sickle cell disease will not define us.
What will it take for us to live in a world where ERs can recognize and accept the need for pain medication for sickle cell patients; We do not WANT pain medication, we just want to manage the pain and live a little more like you do;
What will it take to live in a world where we can quickly get the medicine we need at the right time, at the right dose; where we can be seen as a patient and not an addict; where there isn’t a shortage of hematologists in our community or in our insurance plan;
What will it take to live in a world where we can be transitioned appropriately to adult care networks that connect us with community resources and holistic, coordinated care -- that not only manages our crises but helps prevent them, with the varied therapeutic options that other kinds of patients have….
This is the world we fight for!