EMPOWERING MYELOMA ADVOCACY ACROSS EUROPE


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A multi-stakeholder coalition consisting of more than 60 representatives from the global patient advocacy and clinical community has formed the International COVID-19 Blood Cancer Coalition (ICBCC) to address the specific impact of the pandemic on immunocompromised blood cancer patients and to recommend solutions and actions to mitigate those risks.

The special vulnerability of those with blood cancers and others needs to be addressed in a proactive way. While we need to be prepared for surprises when dealing with COVID-19, certain principles and recommendations can inform best practices for the IC/IS community.
 
To this end, the ICBCC has published a patient impact statement and recommendations for patients during the COVID-19 pandemic, which MPE and a number of our member organisations has endorsed.
 

Recommendations

1. Access to fast response COVID-19 testing for high-risk patients. Many of the lifesaving therapies must be instituted quickly after diagnosis to be effective. Waiting a week for the results of a PCR test could be a fatal delay. Possible solutions include:

  • Special access to home tests for the IC/IS community.
  • Testing slots set aside or special testing sites for the IC/IS.
  • Systems should be in place at national level to process the IC/IS that test positive to COVID-19 to ensure a quick access to treatment.

 
2. Access to Pre-Exposure Prophylaxis or PrEP and Post Exposure Prophylaxis or PEP, and antivirals for high-risk patients. When vaccination doesn’t provide protection, there must be adequate access to appropriate therapies to prevent and treat infections. A critical claim, it can be achieved by accelerating the production and equitable distribution of antivirals and CmAbs. We have good options but scarce supplies.
 
3. Using scientific rigor to best define who is at high risk for COVID-19. It cannot be based on a single blood value and instead should be informed by the increasing volume of scientific literature on COVID-19 outcomes in several different IC/IS communities. This is especially true for all those with lymphoid malignancies including many lymphomas such as CLL/SLL (chronic lymphocytic leukemia/small lymphocytic lymphoma), regardless of whether they are before, during or after treatment.
 
4. More research is needed about blood cancer and IC/IS patients and existing and future antivirals.
 
5. Ensuring equitable access to best practices and treatments as well as affordable PPE and COVID-19 tests regardless of geographic, socio-economic, racial or ethnic considerations.
 
6. All those who might benefit should be offered additional or “booster” vaccine doses. Booster vaccine doses should be offered especially to the elderly and immunocompromised based on studies demonstrating their protective benefits.
 
7. Involvement of the medical institutions in low- and middle-income countries into the clinical studies / trials of new anti-COVID-19 medications.
 
8. Provision of psychological and psycho-oncological services specifically to the immunocompromised who need to continue shielding and social distancing despite the relaxation of public rules. Offering the right protective measures complete with a comprehensive strategy to protect the patients from the multiple stressing factors of being immunocompromised, less protected than others, being in lockdown or otherwise shielding from the environment will lead to better physical and mental health outcomes.
 
9. Vaccines must be made available globally, not only in high income countries. Reliable information about vaccines and treatments should be made available and more visible.

Read the full statement here.







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