ICBCC SUCCESS STORIES & ACCESS NEWS
In this section you will find a list of success stories that have been reported to us following the launch of the International COVID-19 Blood Cancer Coalition´s (ICBCC) Joint Patient Impact Statement on 21 February 2022.
We are listing examples of countries where changes have been observed that can – at least to some degree – be attributed to the coalition´s joint Statement.
It´s great to see that the Statement is making impact and showing success!
At the bottom of the page, we are also listing Access Updates related to Pre-Exposure Prophylaxis (PrEP) and Post Exposure Prophylaxis or (PEP), and antivirals. These are not directly related to the release of the coalition´s joint Statement.
Thanks for sharing your updates with us by sending an e-mail to email@example.com We will make sure to add your story to this hopefully quickly growing list of inspiring success stories.
ICBCC SUCCESS STORIES
Australia: Article referencing to ICBCC and its Joint Patient Impact Statement, 8 March 2022:
People with blood cancers must not be ‘left behind’ as pandemic protections dropped
By Michael Woodhead
8 Mar 2022
Prof John Seymour
Haematologists at the Peter MacCallum Cancer Centre in Melbourne have backed global calls for people with blood cancers not to be ‘left behind’ as pandemic protections against infection are dropped.
Peter Mac has joined other groups such as the Leukaemia Foundation in endorsing the International COVID-19 Blood Cancer Coalition (ICBCC)’s Patient Impact Statement that seeks to raise awareness that blood cancer patients remain especially vulnerable to COVID-19 and they deserve access to additional protection measures such as access to testing and antivirals.
Professor John Seymour, Director of Clinical Haematology at Peter Mac and Royal Melbourne Hospital, says the statement is needed to ensure that people with blood cancers such as Chronic Lymphocytic Leukemia do not remain ‘prisoners of the pandemic’.
Unlike other members of the community who have gained protection against COVID-19 from vaccines, many people with blood cancer can not achieve adequate protection despite multiple doses of different vaccine formulations and remain at high risk of a fatal outcome if they were to contract the infection, he notes.
“While many communities move toward normalisation of their activities protected by vaccination, patients with blood cancers are being left behind, and do not have the opportunity for safe resumption of their normal lives. A humane society must strive for equal protections for all members, and this collaborative statement calls for such equity,” said Professor Seymour.
The statement’s recommendations include providing access to fast response COVID-19 testing, access to Pre-Exposure Prophylaxis (PrEP), additional booster doses of vaccines, and provision of psychological/psycho-oncological services.
It also calls for education for immunocompromised/immunosuppressed (IC/IS) patients to continue masking and social distancing in high-risk circumstances such as public transport, even if the public rules on masking and social distancing are relaxed.
“Safety measures and masking should continue to be maintained in any clinical setting when treating IC/IS patients even when public rules are being relaxed,” the statement advises
There is also an ongoing need to define who is at high risk for COVID-19, the statement notes.
“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 leukaemia/small lymphocytic lymphoma), regardless of whether they are before, during or after treatment,” it states.
Peter Mac says it will continue support the ICBCC as it develops a global campaign with toolkit and materials to raise awareness of the blood cancer community’s needs around COVID-19.
USA: The CLL Society Team, 5 March 2022:
“CLL Society is overjoyed to see that the immunocompromised community was explicitly mentioned by the President of the United States, Joe Biden, in the State of the Union Address on March 1, 2022. To see the immunocompromised community recognized in this esteemed public forum in relation to ensuring the most vulnerable are protected against the risk of contracting and preventing severe COVID-19 is truly remarkable.
- And we’re launching the “Test to Treat” initiative so people can get tested at a pharmacy, and if they’re positive, receive antiviral pills on the spot at no cost.
- If you’re immunocompromised or have some other vulnerability, we have treatments and free high-quality masks.
- We’re leaving no one behind or ignoring anyone’s needs as we move forward.”
President Joe Biden, State of The Union Address March 2022
Nonprofits have been working tirelessly over the past two years to increase awareness of the needs of the immunocompromised, including those with chronic lymphocytic leukemia (CLL). We would like to think that in some small way all our advocacy efforts together are now being heard at the highest level and are playing a role in decisions being made.
CLL Society is incredibly appreciative that the needs of the immunocompromised community are being recognized and met by the President. It’s looking like those who are immunocompromised will be left behind no longer; their needs will no longer be an afterthought.”
ITALY: Prof Paolo Ghia, President European Research Initiative on CLL – ERIC, 25 February 2022:
“Few days after we completed the Patient Impact statement, I have been involved in an ad hoc committee by the Italian regulatory agency (with which I shared our statement) to advise about the use of vaccine and antibodies against SARS-CoV-2 and 5 days ago, the agency announced that:
- starting March 1st they recommend the 4th dose of covid vaccine to patients with immunodeficiencies (with or without therapy);
- the immunodeficient patients that after 14 days from the 4th dose do not develop an immune response will be eligible for the preventive injection of the AstraZeneca antibodies.
These recommendations include also patients with CLL regardless an active or past therapy.
I am proud that Italy has been the first country to take such action perfectly covering the requests that we all put forward in our statement.”
ISRAEL (Prof Yair Herishanu)
“In Israel we use I.M. tixagevimab and cilgavimab (Evusheld) for pre-exposure prophylaxis in CLL patients actively treated as well as in those with hypogamablobulinemia or recently exposed to anti-CD20 based regimen (Serology results may also help to select patients).
- Importantly, it is not a substitute for COVID-19 vaccination
- Can be redosed every 6 months.
- If a subject has received a COVID-19 vaccine, evusheld should be administered ≥2 weeks after vaccination
- Please not that it has moderately reduced activity against the Omicron variant. Two days ago the FDA has revised the emergency use authorization for Evusheld. Previously, the authorized Evusheld dosage was 150 mg of tixagevimab and 150 mg of cilgavimab. With this EUA revision, FDA has increased the initial authorized dose to 300 mg of tixagevimab and 300 mg of cilgavimab. A higher dose of Evusheld may be more likely to prevent infection by the COVID-19 Omicron subvariants. Patients who have already received the previously authorized dose (150 mg of tixagevimab and 150 mg of cilgavimab) should receive an additional dose of 150 mg of tixagevimab and 150 mg of cilgavimab as soon as possible to raise their monoclonal antibody levels to those expected for patients receiving the higher dose.”