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13-year-old Maithili, a cancer patient, should never have ended up in Mexico.

13-year-old Maithili, a cancer patient, should never have ended up in Mexico.

The desperate parents of Maithili, a 13-year old girl with a rare brain stem tumour, sought treatment in a Mexican clinic, spending €400,000. However, it turns out that the intentions and medical sincerity of Clinica 0-19 in Monterrey, Mexico, where Maithili received an experimental treatment, are highly questionable. The lack of transparency, refusal to communicate with fellow physicians, and the absence of evidence raise doubts.

We fully understand that parents will go to great lengths for their child, and this should not be condemned. However, the financial and emotional exploitation by a clinic under the guise of empathy for seriously ill children must be unequivocally condemned. This is an indictment that we want to sound loudly and unfortunately transcends the human tragedy of one family.

Experimental treatments in Europe and the US are regulated, but in this clinic in Mexico, these rules are not followed. The clinic has no proper references, communicates through social media making false claims, and keeps details secret. Requests for collaboration and sharing treatment information, with researchers are ignored.

Maithili should have had access to experimental treatment options for free and closer to home. Unfortunately, rare cancers receive inadequate research funding, leading desperate patients to explore dubious alternatives. Nevertheless, the answer lies in science. Research funding must support clinical studies to explore promising avenues. It's time to shift towards strategic philanthropy for more studies, scientific collaboration, and independent support networks.

Maithili's tragic end highlights the need for better information on treatments. Oncologists are limited to conventional treatments due to ethical constraints and they often only refer to experimental treatments upon request. Patients turn to the internet for alternatives, but registered clinical studies rarely appear in search results.

The Anticancer Fund commits itself to provide reliable information for patients and support ethical medical progress. Maithili's legacy should prompt a fundamental change in our medical system. Cancer patients should not face financial ruin while searching for treatments. More funds for clinical research and strategic philanthropic investment are the way forward.

Clinica 0-19 in Monterrey, Mexico

Clinica 0-19 is a medical clinic in Monterrey, Mexico that claims to “treat” diffuse intrinsic pontine glioma (DIPG) by offering an experimental treatment.

Experimental treatments in Europe and the United States are subject to strict rules and agreements. Conducting experiments on people is not allowed without proper oversight. In Mexico, these rules also exist but are not always adhered to.

The doctors (or the clinic) in Monterrey have not authored any scientific articles illustrating their treatment or methods. All communication from the clinic occurs through social media, WhatsApp, or intermediaries. The doctors remain silent and shrouded in secrecy. The details of the treatment are not disclosed to doctors, patients, or scientists.

Requests for collaboration with other hospitals and sharing their treatment protocol with researchers are systematically ignored. Repeated offers of free scientific support to help the doctors document their "successes" are left unanswered.

The Anticancer Fund sought contact with the hospital in Mexico where Maithili and her parents went, for months in vain. This attempt to make contact was done in consultation with other researchers and institutions worldwide in the hope of obtaining more information about the treatment offered to Maithili and other patients.

Experimental treatments should serve the interests of medical progress and all patients. Charging money for experimental treatments is ethically incorrect and scientifically even not allowed in official clinical studies because it does not align with the ICH-GCP ("Good Clinical Practices").

Publishing experimental research results is good practice to judge effectiveness of a treatment but this did not happen by the doctors in Monterrey. Anecdotes on social media about alleged successes of the clinic hold no value as scientific evidence. They only appeal to emotions. The reasons cited by the doctors for their lack of communication (no time, no internet access, no trust in other clinics and doctors) are not credible and in addition to the high cost it makes the intentions of the clinic highly questionable.

Maithili should have had access to a free experimental treatment closer to home.

Because DIPG, Maithili's cancer, is a very rare brain stem tumour, it doesn't surprise us that she couldn't find appropriate treatments in Belgium, as there is a shortage of treatment options for less common cancers, and unfortunately, all childhood cancers fall into that category. It is evident that there is a structural problem in the priorities of cancer research.

The concept of “repurposing FDA approved drugs ” as the the clinic in Mexico claimed is theoretically commendable because one in four cancer patients has no treatment options. Creating new options can only be achieved by offering more experimental treatments. However, this should go hand in hand with collecting and sharing scientific data on what works and what doesn't.

The answer to the fight against cancer is not far-fetched; it lies within science. Researchers have plenty of avenues to explore, and stacks of potential trials are waiting for funding. The importance of clinical studies unfortunately comes with complexity, making studies last several years and costs in the millions for a single drug or treatment in a specific patient group. Too many promising avenues currently lack funding for such studies. It took the Anticancer Fund two years to initiate a much-needed trial in Belgium and France on immunotherapy for children (Metro-PD1 study). The tragic part is that Maithili would likely have been eligible for this trial, and it would have been free. While there is often no solution for rare cancers at the moment, dubious clinics and money-hungry pseudoscientists fill the void, disguised as white knights on horseback.

Towards a better medical system

It takes courage to move away from emotional charity and shift towards strategic and targeted philanthropic investment: more studies, more scientific collaboration, and more independent support networks.

If Maithili's months-long battle can result in one thing, it should be that her story prompts us to think. The real question is who has the courage to bring about the fundamental change needed in our medical system. Cancer patients should not have to search for treatments on their own, let alone be financially ruined. Funds need to be mobilized more for urgent and adequate clinical research. It takes courage to move away from emotional charity and shift towards strategic and targeted philanthropic investment: more studies, more scientific collaboration, and more independent support networks. It is a very poor consolation for Maithili and her parents, but for the dozens of boys and girls who will follow her, this is the only correct approach.

A tragic end for Maithili

Maithili lost her battle against the rare brain stem tumour that had dominated her life for two years. The dubious treatment she received in a Mexican clinic cost a fortune and did not help her overcome cancer. For her and two other Belgian children who died after treatment in Mexico, the battle was lost, but they showed us that we can offer more for other young patients.

We regret that her story had to unfold this way, but Maithili leaves us with a legacy. The girl's story has shaken us and made us realize that there is a great need for additional information regarding treatments among patients and oncologists.

Ethically, oncologists are bound by existing conventional treatments in the fight against cancer. Actively referring patients to early experimental treatments is something oncologists cannot do because it is considered unethical. This is because the outcome of the research is unknown, and it can provide "false hope." Many cancer patients, therefore, search the internet for alternative solutions. Unfortunately, registered clinical studies rarely appear in search results because advertising for studies is not allowed, and there is room for doctors primarily motivated by financial gain.

There are indeed scientifically supported experimental treatments, but it is difficult for patients to access the right information and separate the wheat from the chaff. The Anti-Cancer Fund commits itself to better assist patients in their search for reliable information.

Lydie Meheus
Lydie Meheus

Lydie Meheus is the Managing Director of the Anticancer Fund. Lydie holds a PhD in Biochemistry.