Raise your cups! Today is 9/22, World CML Day. We unite every year on 22 September because for still unknown reasons, in about 15 out of a million humans, Chromosomes 9 and 22 swap genetic sections, which then leads to uncontrolled growth of white blood cells, causing Chronic Myeloid Leukemia.
2021 is a special year for many of us CML patients. Personally, yesterday 20 years ago was the day I started my CML treatment on a clinical trial. In 2001 I thought wouldn’t have even one more year to live. For the CML community, it’s been 20 years since Imatinib, a drug which has revolutionized CML treatment, was approved by the FDA. Before 2001, therapeutic options looked grim where patients had decide between the hardships of bone marrow transplant and the high certainty of progression on all other available drug therapies. Imatinib led to a new paradigm in turning a deadly cancer into a chronic disease. Today, five molecular therapies have been approved, and a sixth is currently in the market authorisation process. As long as you diagnose early and have access to all available treatments to treat potential mutations, you can live a kind of normal, long life. And after years of treatment and deep remission, one fourth of CML patients can even safely stop therapies. The rest though needs to take drugs for the rest of their life, if they can.
So where is the issue, is CML a ticked box after those 20 years? Far from that. Without effective treatment, CML is still progressive and lethal. Still too many are diagnosed in advanced phases and then those drugs rarely work. And most patients in the world unfortunately do not have access to those drugs, or diagnostic tests, or experienced clinics or physicians. Even if they have, they may still not be able to afford the drugs, the co-pay, the testing or even the trip to the clinic. If access is not an issue, some may not tolerate the drugs well, and many can’t stop treatment even after years of therapy. And besides stem cell transplant, there is no cure for CML yet.
Yesterday it’s been exactly 10 years since Giora, Jana, Erik and I set up the Leukemia Patient Advocates Foundation in Switzerland. What we call “LePAF” is the non-profit entity that formally hosts the global CML Advocates Network which we founded back in 2005 without a registered entity. The CML Advocates Network has now grown to a network of 128 patient organisations in 93 countries, led by a steering committee of nine advocates from all six world regions, led by Sarunas and Felice, supported by our Denis and his team.
These 20 years have also been years of revolution and evolution of patient advocacy. When I became an advocate in 2001, our CML community started by learning a lot from what other communities like e.g. the HIV or breast cancer movement had already established before us. Being blessed with the privilege of good survival of our advocates on the new therapies, the CML community was able to pioneer a lot of things and worked hard to become a trusted partner of CML researchers, healthcare providers, companies, authorities and policy makers. It’s grown beyond its founders and with its Steering Committee and CAB members, it has become a strong global community of experienced advocates that has also worked as much as it could with other patient communities in hematology, cancer and beyond.
Many see us advocates (and specificsally me) as troublemakers because we’re never satisfied, never grateful enough, not the patients with patience. But whom would it help if spend our time patting each other on our shoulders while many of our patients are still suffering and dying in the lack of effective therapies and care? It has taken 30 years of research to get to where we are in CML today, will it really need another 20 years to find a cure for everyone in need? We just can’t rest, the status quo and a bit more is just not good enough.
World CML Day is always a day for me to reflect, being grateful for the additional years that were given to me, being enthusiastic about the people that challenge the status quo, and being blessed for an impressive patient community that we’re part of.