Infant Eye Care Bill - Florida

One in every 677 live births in the United States has a treatable eye disease or anomaly that will cause blindness unless detected early. I urge you to be a proud sponsor of the Infant Eye Care Bill. I hope that at least one Florida representative will have the courage to put children first!

As a rare cancer advocate, I have seen the horrible outcome of not having an adequate level of infant care. The omission of a standardized test with an ophthalmoscope, during well baby visits, leaves these children defenseless against diseases that cause blindness or even death. One life threatening disease that continues to devastate lives, as a result of this unnecessary negligence, is retinoblastoma.

I have found, first hand, that the prognosis for retinoblastoma is very good (>90%) if, and only if, it is caught in the early stages. If it is not, the prognosis is gruesome at best; and may be deadly. Some children will undergo intensive chemotherapy or radiation of the eye and it's structures. Others will undergo enucleation of the eye (see www.eyeatlas.com/box/285.htm). Some get to live (tinyurl.com/4bdmj), after enduring the worst. Still others will die (lovejoey.com)(geocities.com/pzzldme). The sad story is that before these children die, they endure treatments that most adults cannot tolerate. It is a slow, intolerable, way to die.

Retinoblastoma prognosis is good if detection techniques are used and prompt medical care is available.

Visual preservation occurs in 90% of children with group I and II disease; 30-40% for group IV and 10-15% for patients with advanced group V disease.

If enucleation is necessary, the cure rate is almost 90% if the optic nerve is not involved and the removal surgery is performed before the tumor passes through the lamina cribrosa.

Survival rates decrease to 60% if the tumor extends beyond the lamina cribrosa even if the cut end of the nerve is free of tumor cells.

Survival rates decrease to less than 20% if the tumor cells are found at the surgical transection sight.

Death occurs secondary to intracranial extension.

These are facts. Facts that the parents of retinoblastoma children have to live with everyday. One simple test could save these children the pain of chemotherapy, the torture of losing an eye, and the loss of their very lives. How do you think these parents feel knowing that if the necessary ophthalmoscope test was included in their routine well baby visits, their child's vision or life may have been saved? This life saving procedure needs to be mandated - Today!

Thank you, Sharon Lane rare-cancer.org