Reflections Following the Loss of a Beloved Cancer Advocate
The passing of our dear friend, advocate and colleague Ferdinand, has shaken the close-knit global chronic myeloid leukemia (CML) community. CML, a rare form of leukemia that used to be fatal, now is treated with innovative targeted therapies commonly referred to as TKIs. There has been unprecedented global access to these TKIs and this has fostered the development of one of the strongest global patient communities for a rare cancer. Ferdinand, from Nairobi, Kenya, was a loved member of this community.
Since his passing earlier this week, questions arose regarding what happened, how come we could not provide more help, should we have done something else, is it all worthwhile if we cannot even save our close friend, are swirling in our minds. I would like to offer a few reflections as we close this difficult week.
We are not God. We are not limitless. What makes a good advocate is the belief that what is, is not necessarily what could or should be, and the perception that I, myself, can change the status quo. This is what drives us and makes us very successful advocates. We don’t usually see the limits until we smash our face on it, just like we did this week. Yet, chronic myeloid leukemia (CML), like all cancers, is a horrible, mean, awful disease, and we are not God. In the case of CML, Tyrosine Kinase Inhibitors (TKIs) are often able to keep it at bay, and people are able to live a pretty full life with controlled CML, but when left unattended it rears its ugly self out and there is no stopping it.
We are also not powerless. There are indeed things we can do that might have influenced the outcome for Ferdinand, yet perhaps we overlook them because they are so basic that we don’t notice them. Below I will attempt to list some of the challenges and opportunities, big and small, some specific to CML, most, shared in one way or another by any cancer patient in resource-challenged settings.
I firmly believe that the first and most important thing we need to continue to work on is access to innovative treatments such as TKIs for every patient, no matter where they live. Early, timely, continuous access to treatment. At The Max Foundation, and in collaboration with physicians and industry, this is what we are placing most of our resources on because it makes the biggest difference.
In this regard, we need governments to work with us. We need to be all on the same team. Time and time again we are fighting import regulations, impossible import taxes being imposed on the humanitarian aid of cancer medicines, and lack of engagement. If we can successfully demonstrate to governments the importance of treating cancer, we will be more likely to have their needed engagement. Ferdinand did a wonderful job these past years speaking for the cancer patient community in Kenya and developed a great collaborative relationship with his government. We need more Ferdinands, but to have more Ferdinands, we need to be able to bring in the needed treatment.
Access to innovative treatment needs to go hand in hand with access to diagnostics. Most countries in the world lack access to cytogenetics and molecular testing. We have made some progress bringing the innovative point of care GeneXpert technology to some of the countries. This still remains the most efficient and plausible solution. However, we are very far in access to mutation testing. Currently, we do not have a good solution for this. I view this as a problem with a high degree of difficulty issue to solve.
Access to safe and painless bone marrow aspirations (BMA), on the other hand, is an area we should be able to improve. This is a silent problem in the community. In many countries, the experience of having to undergo a bone marrow aspiration is a patient’s worse nightmare, and many develop heavy trauma. No sedation and the procedure might be performed by students; patients often tell me the person performing the procedure had to go in 5, 6, 7 times into the bone with the big needle because they could not get a sample. Terrible pain and pressure of someone penetrating your bone; remember, no sedation. Ferdinand, I know, needed a BMA and delayed it due to the fear and trauma of the experience in the past. This issue should be something we work on as a patient community because bone marrow aspirations are still needed at the most critical times in the treatment, especially when someone stops responding to the TKI for unknown reasons.
Adherence is key. We know, for CML treatment, an adherence of at least 93% makes a big difference. This means patients should not miss their daily dose of TKI medicine more than 1 or 2 days a month. The global CML community is a great example of leaders in this area. A well developed, impressive adherence survey led by the CML Advocates Network shed light on the complexity of treatment adherence. Good for us. Now, how about we look at the result of the survey to identify specific interventions we can take as a community that might increase adherence? I do not see why not.
Stem cell transplants, while possibly curative, are not an option for patients in most countries of the world. By the time transplant is our only option, we are out of options. No one should sell their family home and travel alone across the world to have a very risky stem cell transplant and risk dying alone and away from their families as a result of it. This is possibly one of the largest pieces of the global cancer divide and it will take a lot of time and resources to solve. A center of excellence for the treatment of CML in Sub-Saharan Africa is a dream I hope can come true someday.
Ferdinand Mwangura passed away this week in Nairobi, Kenya at the age of 40. He lived with CML for the past 13 years, many of which he dedicated to ensuring that the global community understands the needs of cancer patients in Kenya. Ferdinand leaves behind his wife Sereni, and six-year-old daughter. Today Ferdinand and Max finally met, their spirits, together with many other who passed on, will continue to guide our actions. Today we dust ourselves off and turn our grief into action.