iwCLL 2025 | Ongoing projects to improve the outcomes of patients with CLL in resource-limited settings

The iwCLL strategically decided a few years ago now that they really want to expand their outreach globally, especially to resource-restricted countries, low- and middle-income countries, and as part of the Global Partnership Subcommittee, we are employing a multi-pronged approach to this. 

So first of all, we have an emphasis on training and education, so we offer visiting fellowships, we offer capacity-building programs, we have travel awards for the biennial meeting of the iwCLL. And we have an online education program that consists of recorded lectures and live master courses that are shared by board members of the iwCLL, and it’s specifically for people who are looking after patients with CLL in low- and middle-income settings. It’s completely free, and everybody gets a certificate of attendance at the end, and that’s really been very successful, and the uptake… we have students from all continents, and it accompanies the access program of the Max Foundation. 

So the iwCLL partnered with the Max Foundation in providing and distributing BTK inhibitors. At the moment, it’s one of them called zanubrutinib. And this drug is now being distributed, hopefully, to many low- and middle-income countries. It would be really great if other companies would also follow BeOne’s excellent example of providing access to some of their drugs. Because the issue of copycats and drugs that are being sold in many countries where the regulatory authorities do not reinforce access so much, and control access, copycat drugs are a real problem, and we need to ensure that the right drug is coming to the right patient at the right time, and the Max Foundation has 25 years of experience of delivering life-saving drugs in both chronic myeloid leukemia and now also in many solid tumors to our patients in need, and we really want to support this program. 

So the education around diagnosis of CLL, what are the side effects of the drugs, how do we monitor treatment response, this education is really important, and this is what the iwCLL provides. So the most recent initiatives of the Global Partnership Subcommittee are that we also want to strengthen the development of resource-restricted recommendations. So we had a lot of requests from our clinical colleagues in low- and middle-income countries, but also actually in other parts of the world where some patients can afford anything and other patients can’t afford anything. So we need to increasingly develop recommendations around what is really essential, what do we really need to establish the diagnosis, what are the minimal criteria, and also what are the really important therapies, and the treatment algorithms can be adapted to some extent according to how much patients can afford. And so we want to play a role as the iwCLL in defining resource-restricted recommendations. So we have a working party working on this. 

And then we have another working party working on really beginning to create some form of capacity building in clinical research and translational research, because ultimately we want those countries also to run clinical studies, in particular in ethnically diverse parts of the world, where it’s important that we run at least bioequivalent studies or we’re running real-world studies. So we have partnered with ERIC to utilize and distribute a database that can be used for data collection, initially maybe to obtain very basic demographic data. In many countries, we don’t even know how many patients are there with CLL, what type of CLL do they get, what are their risk factors, how old are they, so it’s very basic information. But then increasingly we would want to collect data on side effects of drugs, response duration of drugs. And the way this, or the only way, this will actually work even across Europe and the US would be in ways of federated databases. So we are working off the same data sheet, so we’re collecting the same data, but then each country can do their individual analysis. And that means that there’s no issues with confidentiality or access to confidential data in any shape or form because we are only sharing the secondary analyses and confirming each other’s analyses. So we hope that this will be an exciting project for upcoming leaders, future leaders in research in those countries.

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