ABSTRACT
In this chapter, the critical importance of global collaboration in sickle cell disease (SCD) advocacy and management will be illustrated on macro, meso and micro levels. On a macro level, despite the scant policy attention by the World Health Organisation, advocacy by African and Black led sickle cell groups has led to better care and management of sickle cell in the Global North and South. On the African continent, activism by healthcare professionals, the diaspora and parents is ensuring screening and public-private partnerships while warning about equity of philanthropic investments into new therapies and genomic cures.
On a meso level, there has been a mushrooming of voluntary organisations and empowerment of patients in countries like the United Kingdom and United States. Correlated to the civil rights movement, advocacy had led to sickle cell being closely aligned to anti-racism and rights of minority ethnic patients. With the advent of social media, people with sickle cell are finding a voice and engaging in greater empowerment online. This rise of advocacy also affects research and the way in which research will be conducted in the future.
On a micro level, global partnerships impact the way in which sickle cell is understood, from neglect to correlated to global social justice and combatting inequalities. It is argued that the understanding of SCD and the trait will change in the future, as the condition becomes a global public health priority.
