IPIG 2025 | The Max Foundation: revolutionizing treatment access and accelerating health equity

The Max Foundation is an organization established in the memory of Max. Max was my stepson and he was diagnosed with chronic myeloid leukemia more than 30 years ago before we had these great treatments. So Max passed away in 1991 when he was 17 and we established the Max Foundation to do something so that other families wouldn’t have to go through what we went through. 

One of the first lessons I learned when I established the Max Foundation is that for the amazing new innovative medicines for cancer and rare diseases that you see come to the market today, by design they will never reach patients in half of the countries of the world. And, you know, we believe that every life matters and we believe that it is possible to bring these medicines all over the world. So our mission is to accelerate health equity to make sure that everyone… we say geography should not be destiny and everyone should strive for health with dignity and with hope. 

In 2001, as Gleevec (imatinib) came to the market, we established a collaboration with the maker of Gleevec, Novartis, to bring this drug to people in 80 countries who otherwise would not have access to this drug. And so we established what was first called the Gleevec International Patient Assistance Program, which is a patient-by-patient international donation of medicine in 80 countries around the world. And we ran that program, we administered that program for Novartis for about 15 years. And in 2017, we realized that as great as this program was to bring access to Gleevec to patients in these countries, we helped thousands of patients, at the center of the program was not the patient, it was the drug. And when patients needed other drugs, we had no way to bring them to them. So we reinvented our organization. We established what we call Max Access Solutions with really the patient at the center and collaborating with not only the physicians in these countries but all the companies that have drugs for a certain disease, and so we launched Max Access Solutions and overall we have helped more than 100,000 patients over the last 22 years. 

We have expanded; we started with CML and I have to say we reached what I thought was my dream that today in the poorest countries of the world if you’re diagnosed with CML you can have access to any treatment that you need and we have shown, our data shows, that we have eradicated survival disparities for this disease, so now we want to expand to other diseases. And in the last couple of years we have launched a program for breast cancer and at the same time we realized that our infrastructure is very unique and great to work on rare diseases. So last year we launched a collaboration with IPIG and with Novartis to bring access to treatment for PNH to patients in 53 countries of the world. 

Our plans are to continue to reach patients and at the same time, to invest in building the infrastructures of these countries. So what happens is, because there is no access to treatment, there is no access to diagnosis. No physician wants to diagnose a patient, only to tell them they have nothing to give them. So as soon as somebody makes their drug available, we work with other partners to elevate the infrastructure, especially for diagnostics. So in the next few years, we want to invest quite a lot of resources in elevating the infrastructure, training physicians, and maximizing the impact of these treatments.

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