Heath and his colleagues have presented J's adventure, within which is a microcosm of worlds colliding and the resulting ramifications on the patient, the family, society, and the world. A glimpse into the life of J exposes some of the most pressing issues in international cancer care and cancer referrals.

The rich and royalty have always had the privilege of obtaining medical care far from their own countries and no one has questioned their personal freedom to spend their money as they wish. However, J's situation is different because his family did not have independent means to obtain experimental treatment in the United States, but rather sought and used societal resources to do so.

In moving from Australia to the United States, J demonstrates the diversity of medical care systems. The Australian system is primarily based on communal funding for the communal good (ie, socialized medicine) while the American system is primarily based on a free-market system economy allowing individuals to buy treatments they can afford through whatever means. These treatments can include highly experimental therapy with unknown expectations for cure.

The American system is also different from the Australian system in that treatment tends to be very aggressive. Children with poor prognosis neuroblastoma in this country are usually treated with aggressive chemotherapy, debulking surgery, and single or tandem stem-cell transplantation with myeloablative doses of chemotherapy, followed by long-term retinoic acid.¹ Those who do not respond are often referred for experimental treatments. We do not know the specific details of J's case, but it is likely that he may have been treated aggressively, along these lines, in the United States.

The expectations for J's cure may or may not be excessively optimistic. Neuroblastoma is a fatal disease for most children who acquire the disease after 1 year of age, have metastatic disease, and/or have a n-myc oncogene amplification. However, in recent years, aggressive treatments with tandem autologous stem-cell transplantation and long-term maintenance retinoic acid have increased the long-term relapse-free survival rate from 0% to 30%. Novel therapies are in progress and include immmunotherapy with antibodies against GD2 (a ganglioside present on neuroblastoma cells), vaccines, apoptosis promoters and/or angiogeneis inhibitors, and nonmyeloablative allogeneic stem-cell transplantation to induce graft-versus-tumor effects.¹ These therapies may, or may not, increase survival; the results are not yet known.

Whether or not J survives, there will be enormous costs. Expenses include not only the enormous amount of money that needed to be raised, as well as personal expenses, but also the cost of leaving family, home, and country to live in a foreign land for the duration of treatment. It includes disrupting the family unit, psychological trauma to siblings, probable loss of work for at least one of the parents, and daily angst and anxiety.

If J survives his disease through aggressive treatment at the United States center, then the family's travails will probably be worthwhile sacrifices. However, his survival would have come at a high cost in terms of complications from aggressive treatment. Known complications include renal failure from vascular injury at the time of surgery, multiple endocrine effects, impaired growth, thyroid dysfunction, infertility, secondary malignancies (especially myelodysplasia and leukemia), scoliosis, cognitive defects, cardiac problems, otologic troubles, neurologic pathology, and mild to severe psychosocial distress including post-trauma stress disorder and a high risk for suicide.¹

Whether J is truly being overtreated or not can only be determined retrospectively, yet decisions must be made prospectively. This dilemma of living life prospectively but evaluating it retrospectively makes any judgment premature. If one cannot know beforehand if such treatment will work or not, then can we fault these parents for the extreme cost to find help for their son?

Although the dilemma of J is whether aggressive treatment is warranted for an unknown but low chance for survival, his young age makes him heroic in his struggle. Had this person been 80 years of age, instead of 4 years of age, one would hope that he could have accepted his fate and let go at the end-of-life to enjoy the blessings of family and friends and an easy exit, and exert a minimal drain on family resources including time, travel, and financial assets. For a child of 4 years, it is much more difficult to let go, not only for the family but also for caregivers and health care providers. Similarly, it is also easier to exploit the plight of a young child for media attention to a particular specialized center or research strategy.

This child is also different from most other foreign patients seeking specialized care in the United States in that dissemination of his status has been by the media, celebrity fund raisers, and internet web sites focusing exclusively on saving his life, while not exploring other aspects. Much of the information is likely to be biased and incomplete. The media should be careful in their judgments and should involve experts in their field knowledgeable about the situation, even when the experts' opinions are less hopeful than their own. Moreover, information should be complete and should include the fallouts from extravagant, heroic treatment far from one's own country.

The downsides are significant. One downside is the diversion of charity funds. Although St Judes Children's Hospital (Memphis, TN) uses its own charity mechanisms to pay for foreign children's expenses, other research centers do not. Most research centers require families to bring their own funds; when this support is gained from public charities, it diverts funds that otherwise could have been used for possibly greater good. Another downside is excessive expectations from specialized centers. If J does not survive, then will they not question the integrity of the specialized center that had created so much hope for this family? An additional downside is the apparent or real demeaning of local oncologists and physicians.

A final downside is setting precedents that cannot be maintained. Although the authors claim that many other children's families might wish to follow a similar path to that of J's family, this cannot be done. There are simply not enough charities, celebrities, and funds to go around supporting such high costs for more than a single poster child at a time.

Globalization of medicine will probably increase the divide between people with resources by whichever means in access to care, not only within their own countries, as in the past, but also within the world marketplace, whether it be antibody treatment in a specialized center, organs for transplants in China, or treatment holidays in India.

We can expect that J's situation will be repeated, that other parents will similarly search for cures for their children or themselves even when the disease is known to be fatal and the prognosis for cure is dismal. In anticipation of other similar situations, now would be a good time for oncologists of the world to sit together and write guidelines for the ethical transfer of patients, whether it be intra- or internationally. The American Society of Clinical Oncology could facilitate workshops in establishing guidelines for international cooperation in highly experimental therapy for selected patients. Guidelines should include ways in which patients will be accepted for transfer, definitions of successful outcomes, uses of charitable donations, truth in reporting, limits on media and celebrity involvement, communication with local oncologists and other physicians, and shared follow-up after treatment.

J may or may not be cured. His plight, however, should alert us to potential problems in referrals to highly specialized centers, especially when these centers are worlds away from home.

AUTHOR'S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The author(s) indicated no potential conflicts of interest.