In the United States, there is usually a national standard of care for a particular diagnosis. A documented clinical guideline for your physician to follow. No matter where you live geographically, your physician should have access to a standard treatment protocol. Physician education and a worldwide Standard of Care policy are two topics we as advocates need to push. Medical students may briefly learn about superficial siderosis during their training, but it presents so rarely (if ever) diagnosis is often considered inconsequential or untreatable.
This guideline does not exist for Superficial Siderosis.
There are treatment options that were not available five years ago. The progression of superficial siderosis is better understood now. The knowledgeable physician can now offer alternatives to slow the neurodegeneration. Iron chelation will not prove fruitful for every patient, but we are seeing positive reports coming in from some early patients.
The first problem is the use of Deferiprone for iron chelation is still viewed by many physicians as nothing more than experimental. They dismiss the existing studies. Too small. Not enough evidence. When you do find a provider willing to try chelation the dosage protocol varies between doctors so much you can’t possibly track its efficacy.
Secondly, whether you live in a country with an NHS system or the U.S. with private healthcare insurance, your care is dictated by cost. Someone overseeing your healthcare has a vested interest in keeping their expense down. The letter writing and appeal process for treatment approval will exhaust you.
A recognized national or worldwide Standard of Care Policy for superficial siderosis would ensure everyone who opts to receive chelation treatment would be following the same clinical guideline.
We are pleading with the neurological community to submit a clinical guideline for peer review and forward it to the Agency for Healthcare Quality.
This diagnosis is devastating enough. We need to use our voices to tear down the roadblocks we face on our journey.