COVID-19 related CLL advocacy activities
In this section you will find examples of advocacy activities provided by different CLL support and advocate groups during the COVID-19 pandemic.
Please share COVID-19 related CLL advocacy practices available in your country by sending us an email.
UK – Leukaemia Care/CLL Support Association/UK CLL Forum collaboration in creation of a patients’ COVID-19 CLL and SLL survey to measure and track UK patient experiences during the pandemic to inform and direct support initiatives and appropriate care. Over 1000 UK CLL patients have participated in the survey. https://ukcllforum.org/. We were aware that there has been some confusion over what CLL patients should be doing during the current viral pandemic. The survey identified the percentage who had not been receiving instructions to shield as those in high risk group should be doing. We worked with the UK CLL specialist community to create letters for these people to give to their Health Care leads or employers should they be in doubt about their needs to shield and receive appropriate support. This evidence has also supported broader campaigns to make government and health service messaging clearer.
- Conferences and other events: Technology is being used to hold these events virtually wherever possible. As an example, please visit the recent UK CLL and COVID-19 patient information webinars recordings here.
- Regional support groups go digital to continue support during COVID – 19 pandemic: Over 30 local Leukaemia Care support groups now hold their events virtually.
- Financial support for blood cancer patients affected by coronavirus: Leukaemia Care’s Welfare Officer has created a blog detailing the support and benefits available, for UK blood cancer patients affected by COVID-19.
- Self-isolation/shielding for people with blood cancers – FAQs
USA: The CLL Society has taken a leadership role in the international CLL physician community by utilizing its survey expertise to meet the urgent need of producing a time-sensitive survey titled Management of CLL Patients Early in the COVID-19 Pandemic: An International Survey of CLL Experts published in the American Journal of Hematology, which canvassed doctors as to what they are doing to care for CLL patients during the present pandemic health emergency in the absence of peer-reviewed data. The survey was sent to 62 CLL specialists across Europe, Canada, Australia and USA, of whom 59 responded to at least one question.
To read the full article, click here.
Czech Republic: Diagnoza leukemie patient society has its representative (on behalf of blood cancer patients) within the Patient Advisory Board of the Czech Minister of Health. Together with patient advocates representing vulnerable population (rare diseases, cancer, and chronically ill patients) we have pushed for providing patients with respirators type 2 at specific centres of treatment. Also, some quantities to be at the disposal of patient organisations for use of CLL patients in acute need of personal consultation with their treating doctor. Fundraising activities currently in process for Diagnoza leukemie to cover the cost of commercial delivery service of CLL oral therapies to CLL patients living single, i.e. without a caregiver who could pick up their supply of medicine at the clinic.