Using a rights-based approach to improve the healthcare of children with neurosurgical diseases—Presidential address for the 49th Annual Meeting of the ISPN, Vina del Mar, Chile

Excerpt

The mission of the ISPN is to improve the health and welfare of children requiring neurosurgical care throughout the world by scientific research and close international cooperation irrespective of class, color, creed, or economic condition. As pediatric neurosurgeons, we care about the health of the children we look after, and we want to provide them with the best possible care available. Yet, many of us have faced difficulties and frustrations in trying to provide the best possible care for some of our patients; for example, a child with hydrocephalus who needs a shunt, but the parents cannot afford to pay for a shunt or the cost of surgery. Or a 1-day-old baby with a myelomeningocele who has to wait till she is 14 days old before any surgery can be done because there is no insurance cover till then. Or the hospital does not have a neuroendoscope to perform endoscopic third ventriculostomy in a hydrocephalic child with clear indications. We would like to have newer technologies like MRIs, neuro-navigation, higher-end operating microscopes, or even a high-speed drill and craniotome, but these are not available because the hospital cannot afford to buy one. Yet these are basic technologies in pediatric neurosurgical units in most developed countries. Another barrier to providing care is that in many countries (both developed and underdeveloped), children with congenital diseases are denied health insurance cover. …