PXE Patient Avastin Experience

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My husband has PXE and has been battling vision loss for almost two years. His retina specialist has fought hard to stabilize his vision with Kenalog injections, Photodynamic Therapy and a clinical study involving anecortave acetate. But to no avail, his vision continued to get worse. In August 2005 his vision was around 20/150. In November 2005, my husband started receiving Avastin intravitreal injections. He has received a total of six injections and is happy to report his vision has improved to 20/70 and stabilized. He is currently on an "as-needed" basis and at $280/shot, we will continue treatments and financial burden as long as he benefits.

We recently heard from his doctor's office, Medicare is in the process of approving Avastin for its "off-label" use, however they could not tell us whether Medicare will approve it for just AMD or for all inflammatory choroidal neovascularizations Ð including PXE. Have you heard anything regarding this pending approval? Is NAPE advocating this treatment for patients with PXE?

- Patient Name Withheld On Request