iwCLL 2023 | The disparities in access to treatment and resources of patients with CLL in low income countries

I’m proud to be a member of the steering committee of the CLL Advocates Network, or CLLAN for short, whose mission is to improve patient outcomes in CLL and one of the ways we do that is to find out what’s going on in the world. So we did three different surveys to look at what was happening with patients. One was this global mapping of what services were offered and what were the unmet needs and another was looking at what was happening with patients, and another was looking at what was happening at carers. And that’s the data that I’ll be presenting on Monday here at iwCLL.

So CLLAN was able to gather data from 40 different countries representing 57 organizations. As you’d expect, there was a little overrepresentation from Europe and North and Latin America, but still there was a wide representation. The questionnaire was run in seven different languages, and the data was collected for 12 weeks, closing in August of 2021. The areas of interest that we looked at were: What services were being provided by CLL advocacy organizations, whether they were a member of CLLAN or not. What was the access to health care prior to the COVID-19 pandemic and what happened during COVID? How did that affect health care for patients? We compared high income countries to low and middle income countries, and what we found was that there was a significant difference.

The high income countries were able to offer a lot more educational services, things like webinars and conferences. But interestingly, awareness campaigns, which would be less expensive and easier to run, were actually slightly more common in the lower and middle income countries. When we ask people why they couldn’t present some of the things that they wanted to do, the services like clinical trial information or educational brochures, in the low and middle income countries, as you would suspect, the big problem was lack of resources, financial resources. While in the high income countries, the big issues was lack of staff, lack of people to do that. That was also an issue in the low and middle income, but it was the number two issue there. We also looked at how affordable care was, and we found that affording care was not an issue for 61% of people in high income countries, but in the low and middle, it was only not an issue for 21%, meaning almost four out of five people had a problem with paying for their care. Same question in terms of enough therapies that were approved, 55% in high income countries said yes, we have enough, only 32% in the low and middle income countries. Delay in care- this was a significant difference. Only 8% of the high income countries said there was a problem getting my diagnosis quick enough while 55% in the low and middle income found that as a problem. Access to clinical trials, a similar issue, it was much lower. Only 5% in the low and middle income countries thought that they had adequate access to clinical trials. Access to specialty care- in the high income countries, you’d expect 58% of patients said, we can do this, in the low and middle income, as you’d expect, 16%. Mental health resources, similar. You know, that was actually low in both countries, only 18% in the high income, but only 5% in the low and middle income countries. Were there delays after Covid? You bet there were, and they were significantly higher in the lower income countries.

So in conclusion, what we found is that for patients and support organizations, there’s significant geographical differences in what can be offered. High income countries are more likely to offer wider services for education and also policy work than low and middle income countries. The unmet needs are much higher in the low and middle income countries around CLL diagnosis, treatment and support. So we need to be supporting these low and middle income countries, there’s a need to build greater patient and professional educational services, grow involvement in policy decisions and improve access to earlier diagnosis, and more therapies in clinical trials.