Superficial Siderosis : Education and Standard of Care

Diagnosing The Needle In The Haystack

Needle Haystack

Superficial Siderosis physician education and a Standard of Care policy are two areas that need work. Doctors touch on Superficial Siderosis during their medical training. But it presents so rarely during their everyday practice it’s no wonder a diagnosis is either considered inconsequential or untreatable.

Even when presented with new research some physicians feel reviewing fresh data is not a priority. Need to know. If you’ll never have to treat it why bother?

In the United States, with any other serious condition, there is a national standard of care for your 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.

In their defense, we now have a treatment option that was not available five years ago. The progression of Superficial Siderosis is better understood now. The knowledgeable physician can now offer hope of a prolonged and comfortable quality of life for their patient.

The first problem is Ferriprox. Many doctors seem to consider it nothing more than experimental. When you do find a provider willing to prescribe it dosage protocols vary between doctors so much you can’t possibly track its effectiveness.

 

Costs Dictate Care

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. Make no mistake; insurance companies have a vested interest in keeping healthcare costs down. Blue Cross Blue Shield is driving this point home for those of us who live in Texas and purchase individual policies.

A recognized national or worldwide Standard of Care Policy for Superficial Siderosis would ensure everyone receives treatment from the same clinical guidelines and help justify off book drug requests. Dare we hope they might even consider assigning Superficial Siderosis its very own designated insurance billing code. No existing billing code? It can’t possibly be a real medical condition.

Voices Joining

We feel it’s time to ask the neurological community to work together. Create a Standard of Care policy for Superficial Siderosis. If a clinical guideline can be submitted for peer review and sent to the Agency for Healthcare Quality, we might be able to tear down some of the roadblocks we face on our journey for treatment.

 

 

 

4 Comments

  1. Just recently was diagnosed with SS.

    • Hi Dan, It’s a very scary diagnosis to be sure. If you care to talk to others with the same diagnosis, you can join the Facebook group listed on our home page. The group is private, so there are no worries about asking any question you may have or if we can help we are always willing to try.

  2. I’ve been on ferriprox for five month now and I don’t feel any different. I have a MRI in a couple of weeks I’ve been told it takes years to see a difference. We shell see.

    • Stosh, I don’t think you should expect to feel a difference while on Ferriprox unless it’s one of more fatigue. Ferriprox will not improve your current symptoms or the reverse any degeneration that has already happened. Ferriprox is meant to try to remove your hemosiderin (iron) deposits so the damage to your nerves will eventually stop and the degeneration will also stop. Ferriprox may be working slowly but as long as iron remains in your CNS, the damage will continue. Our hope is to avoid the progression that we know will be the final outcome of Superficial Siderosis if nothing at all is done. The outlook for someone who chooses to let nature take it’s course is very bleak.

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