Migrating for a Miracle: The Geographic Divide in Rare Cancer Treatments

BY MATEO RAMÍREZ-VALENTINI

Medical Migration in Rare Pediatric Cancers

In 2021, an eight-year-old girl named Delfi Bollo traveled from Córdoba, Argentina to Houston, Texas, seeking a treatment that her country could not offer her. Her family raised more than $350,000 through crowdfunding and an Instagram account—@todos.por.delfi.cba, “all for Delfi”—built entirely by her parents. It still wasn’t enough to cover housing. Delfi died on February 2, 2022. For families confronting rare pediatric cancers, geography often determines survival.

Medical migration occurs when patients cross national borders to obtain healthcare that is inaccessible or unavailable in their home countries.¹ Cross-border patient mobility can range from temporary travel for specialized medical procedures to longer-term relocation for ongoing treatment.² Patients with rare pediatric cancers are increasingly making these journeys in search of experimental therapies as established treatment pathways are lacking. One of the primary drivers of this movement is the geographic concentration of oncology research. For instance, clinical trials, specialized pediatric oncology centers and experimental therapies cluster in a small number of institutions, most of which are largely located in high-income countries.³ Consequently, families that are confronting rare cancers may find that accessing potentially life-saving treatments requires traveling long distances or crossing international borders. Despite the financial, logistical and emotional burden of this travel, many families view it as their only remaining option.⁴

Diffuse Intrinsic Pontine Glioma (DIPG), a rare pediatric brainstem tumor, illustrates the immediacy behind these decisions. DIPG is one of the most aggressive pediatric cancers; its treatment options are significantly limited, and standard therapy, such as radiation, only temporarily alleviates symptoms and does not change the overall course of the disease.⁵ For families of patients facing this disease, seeking treatment and seeking time often become synonymous.

The Bollo Family

The Bollos had heard about the Burzynski Clinic through a support group of families in Argentina whose children had rare pediatric cancers. One girl, they were told, had gone there and been cured. That story became the hope they were chasing. Unable to afford housing, they stayed with my family.

The clinic offered Delfi an experimental treatment called antineoplastons, a drug that has never been approved by the FDA. Yet it provided almost no support in managing her care. My mother and I spent nights transcribing hour-long voicemails from her doctors because no one else would. Delfi died on February 2, 2022.

Delfi’s story represents a broader pattern. Families confronting rare cancers often face the same reality: a condition for which there are no viable local treatments, experimental treatments located thousands of miles away, and a healthcare system at their destination that was never designed for them. Argentina’s own pediatric oncology data displays this issue. Most families with children with CNS malignancies must travel for treatment due to the concentration of specialist cancer care even inside the nation; the Registro Oncopediátrico Hospitalario Argentino (ROHA) tracks this situation, known as “migración asistencial,” or assistance migration. Between 2012 and 2019, the majority of cases migrated for care, with most seeking treatment in the nation’s capital, reflecting the trend of clustered care.⁶ In response, Argentina established financial assistance, housing support, and caregiver protections for families facing pediatric cancer treatment through Law 27.674.⁷ Still, when the care that a family needs does not exist in their country, domestic policy can’t resolve the issue.

The Burzynski Clinic

Conversations about cross-border care typically center on elite hospitals and clinical trials, but in practice medical migration can lead families to clinics with weak evidentiary foundations, such as the Burzynski Clinic.

The clinic’s treatment (antineoplastons) has never received FDA approval for any disease, and no randomized controlled trials demonstrating efficacy have been published. Additionally, the National Cancer Institute notes that, historically, the trials were conducted exclusively at the developer’s own clinic.⁸ A 2013 BBC Panorama investigation described the therapy as “experimental and unproven.”⁹ In 2016, STAT reported that lawmakers pushed the FDA on behalf of constituents seeking access to the treatment despite no evidentiary basis.¹⁰ In peer-reviewed literature, antineoplastons have been described as a therapy of unknown efficacy for decades.¹¹ Families who travel internationally for care often assume that U.S. medical institutions are subject to rigorous oversight. In reality, that is not always true. 

In 2013, the FDA issued a letter to the Burzynski Research Institute Institutional Review Board (IRB), prohibiting approval of new studies and barring new subjects from ongoing ones. They stated that they had “no assurance” that the institution’s IRB was adequately protecting human subjects.¹² The same year, an FDA Form 483 documented additional concerns, including the enrollment of subjects who did not meet protocol eligibility criteria and deviations from the investigational plan.¹³ However, this form is not itself an enforcement action and the clinic continued to operate.  

https://www.rawpixel.com/image/9647003/photo-image-hand-person-public-domain

Not All Experimental Medicine Is the Same

The problem is not limited to unapproved treatments. On August 6, 2025, the FDA granted accelerated approval to dordaviprone (or ONC201) for H3K27M-mutant Diffuse Midline Gliomas, including subtypes like DIPG, following prior radiotherapy with progressive disease.¹⁴ The combined dataset the FDA used to evaluate the drug across all five open-label, non-randomized studies, consisted of only 50 patients, with an overall response rate of 22% and a median duration of response of approximately 10 months.¹⁴ News outlets and pharmaceutical press releases hailed it as historic.^15–17 However, the evidence base is limited, and the phase III confirmatory trial is still actively recruiting despite beginning in early 2023.^18–20

Notably, despite its marketing as a breakthrough for DIPG, patients with DIPG were excluded from the efficacy population entirely.¹⁴ In other words, the formal evidence base behind its accelerated approval does not include the patients that are most likely to encounter the drug’s public narrative. For medical migrants that are making decisions under extremely difficult circumstances, the gap between what is marketed and what is scientifically proven can mean the difference between pursuing a treatment that offers real hope and prolonged survival and pursuing one that may offer little benefit at all.

https://creativecommons.org/licenses/by-nc/4.0

What Medical Migrants Deserve

Geography should not play a role in determining survival. Right now, it does.

The financial, logistical and linguistic barriers the Bollo family encountered are structural issues with the medical migration system as it is now. Medical migration for pediatric cancers exposes a global health inequity in which the concentration of research and expertise in high-income countries forces families to move yet fails to support them when they arrive for the care they desperately seek. This failure burdens families already struggling with so much.

Trial access reflects this imbalance. Research on cancer clinical trial enrollment demonstrates that the burden of travel falls heaviest on patients from low-income regions travelling significantly longer distances to reach trial sites than their higher-income counterparts.⁴ For families already strained by the financial burden of a rare pediatric cancer diagnosis, geographic concentrations of trials in high-income areas compounds an existing inequality; those with the fewest resources must travel furthest to access care that is, in theory, available to all. Additionally, disparities in access to clinical trials are not only an equity issue but a scientific one. When trial populations are unrepresentative, the efficacy data they produce reflects a narrow selection of those with the disease. Whose outcomes are measured ultimately shapes what we believe works.

The narrative around emerging therapies also exacerbates the issue. The framing of accelerated approvals as breakthroughs prior to confirmatory evidence reaches families through press releases and support groups rather than through clinical consultation—the same channel through which the Bollos heard about antineoplastons. Consequently, desperate families make decisions based on incomplete information.

Moreover, regulation must do more to protect families undergoing medical migration. The case of the Burzynski Clinic underscores what occurs when regulation fails. The Bollo family, and many other families—including another family that stayed with us for their daughter, Martu, who had an osteosarcoma and passed away after a few months of the experimental treatment—raised thousands of dollars to access a treatment that had never been proven to work and even had documented violations. The IRB restrictions and Form 483 violations recorded by the FDA did nothing but serve a largely performative function; the clinic remained in operation and still does to this day. Many families arriving from another country to the U.S. come trusting that U.S. institutions are rigorously overseen. Though rigorous oversight may be the standard, its implementation and enforcement has often failed, as the case of antineoplastons demonstrates. When this oversight fails, the cost is a child’s life and a family’s savings.

Argentina’s response to internal medical migration by tracking patient movements through ROHA and providing caregiver protections and housing support through Law 27.674 demonstrates that these structural issues can be named and addressed. International medical migration deserves the same recognition and response from the global health community.

Conclusion

Medical migration will continue; families will keep moving as the alternative is surrendering hope. Families will continue filling the gaps with crowdfunding campaigns, Instagram accounts and the kindness of their community—the way Córdoba rallied behind Delfi, raised $350,000 and still watched her die. Until trials are decentralized, oversight is well-enforced and accelerated approvals are communicated honestly, survival will continue to depend on geography. 

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References

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