President of the Hope Foundation Shelly Weir is noting that the time has come to screen babies for the trait of sickle cell anemia.
Speaking to Barbados TODAY, Weir said that the organization has been petitioning for early screening for babies since 2002 as a routine to detect babies who have the chronic condition.
“There certainly is no harm in ensuring that these babies are screened at birth,” she said.
Weir also added that Barbados ranked second in the world for the number of incidents of Lupus. Therefore, the organization believed that once lupus was detected early and managed well that one could have a good quality of life.
“The agenda for that has not changed in the terms of the awareness and so on. Because there is no telling of who would get lupus and we are recognized as having the second highest incidence of lupus in the world. Once you have lupus and our story really is – once it is diagnosed early and managed well then you can have a pretty good quality of life and that is not to discount that lupus can take on a life of its own irrespective of how slavish you are in relation to the treatments and everything. You would still have issues,” she said, adding that as a Non-Governmental Organization they had challenges in terms of their finances.
However, the registered charity has decided to attack the current financial situation head-on by implementing their new initiative ‘Moving Hope to Reality, What is Your Dream?’
“The point that you raised in terms of the economic situation and the response of patients and how it would affect them. We actually have a new initiative called ‘Moving Hope to Reality, What is Your Dream?. That concept is our response to understanding that this time that is hard for most people predominately those that are suffering with chronic diseases and so on. Especially, something like lupus and the onset is inevitable for a growing number of young and unsuspecting people,” Weir said, adding that with the initiative the organization would be asking its patients what it was that they would like to achieve and assist them with achieving that goal.
“This is a step for us because we have never done any welfare programmes because it was unsustainable for us. We have a lot of request from people asking how can we help and so on. We thought it would be a good idea to match the needs of our patients to the type of people who want to volunteer,” she told Barbados TODAY.
Weir told Barbados TODAY that it was never the intention of the Hope Foundation to occupy the Non-Governmental Organization Desk at the state-owned Queen Elizabeth Hospital as it was really formulated to form a tripartite relationship between NGOs, The Ministry of Health and the Private Sector.
“ I think it is a good mechanism for Government and NGOs to work together and NGOs and the Ministry of Health to work together. It would be a Ministry of Health initiative instead of inside the hospital. It seeks to have a better relationship between the MOH and the NGOs and in there you can include the private sector [as it seeks] to ensure that we can all work well together,” she said.
Weir said that this year the Hope Foundation would seek to finally complete the lupus ferry which would tell the story of lupus in Barbados as well as have the Voices for Lupus concert later this year. (LG)