CLL Society has been working tirelessly behind the scenes on advocacy efforts to encourage government health officials to keep those who are most vulnerable to COVID-19 (such as those with CLL / SLL) in the forefront of their minds when making decisions especially surrounding testing and therapeutics.
We are proud to have helped launch an international effort that has now evolved into the “International COVID-19 Blood Cancer Coalition” (ICBCC), which has now transitioned to being led by the CLL Advocates Network (CLLAN). You can read more about the Coalition’s efforts here. This important international effort has gathered many blood cancer organizations from around the world to address the specific impact of the pandemic on the immunocompromised and is working collectively to recommend solutions to mitigate risks. The ICBCC just launched their first Patient Impact Statement that can be used to aid various stakeholders in all countries when advocating for the provision of COVID-19 treatments and ongoing care for blood cancer patients. The Statement has by now been endorsed by >50 networks and global organizations as well as 16 renowned medical societies. Please read about the latest success stories that have occurred following the Statement’s release.
CLL Society has also submitted an official statement for public comment to the Assistant Secretary for Preparedness and Response (ASPR). They sought feedback from various organizations to formally collect and examine lessons learned from various groups during the COVID-19 pandemic surrounding preparedness, response, and recovery challenges. Their goal is to hear from various patient organizations so they can draw upon the lessons learned to better prepare the nation for future pandemics and/or public health emergencies. CLL Society again stressed the need to not leave the immunocompromised/immunosuppressed communities behind when making decisions surrounding prioritizing access to testing and therapeutics.