-by Fran Benham

Genentech, founded in 1976, has enjoyed phenomenal success in creating blockbuster biotech medications. Avastin was created to inhibit VEGF (vascular endothelial growth factor) induced blood vessels from nourishing tumors. Genentech chemist Napoleone Ferrara followed his remarkable invention with the discovery that blood vessel growth in age-related macular degeneration (AMD) also occurred in the presence of high levels of VEGF. He began six years of research to modify Avastin for use in the eye, creating Lucentis which in Phase II and Phase III trials demonstrates almost miraculous sight saving ability. While Ferrara was busy with this effort, others were speculating that Avastin might help the large number of patients losing vision due to AMD. Dr. Philip Rosenfeld of the Palmer Eye Institute of the University of Miami treated patients in the process of losing vision with a fragment of Avastin with remarkable results. Word spread quickly among physicians and patients. Patients losing vision due to PXE also enjoyed a positive outcome and today many retain vision thanks to Avastin.

Genentech took Lucentis through the FDA approval process, but not Avastin, which earlier was approved for colorectal cancer. The approval process was expensive as was the transition of Avastin into Lucentis. So why are doctors and patients, happy with Avastin, resisting the switch to Lucentis? Money! An injection of Avastin costs from $50 to $75 and is repeated every six to eight weeks. Lucentis, injected monthly, costs $2000 per shot.

The NIH wants a comparison study of the two drugs, but Genentech has refused to participate. Recently Genentech informed physicians that Avastin would be made less available for vision treatment, but quickly withdrew the decision in the face of protests from physicians. Genentech is reviewing its options with a decision expected in the near future. Lucentis has been approved for Medicare coverage, but most PXE patients begin vision loss in their 40’s, with some in the 30’s, and a few in their 20’s or 60’s. Medicare does not help the majority of PXE patients whose vision loss in prime earning years is shock enough, when most are diagnosed with PXE.

NAPE’s Board of Directors is discussing this with the intention to inform Genentech and the NIH of PXE’s particular issues in the decision process. We have been thrilled and grateful for the miracle of Avastin, and we are deeply grateful for Genentech’s role in this miracle. Many of us lose our ability to pursue chosen careers with vision loss. Avastin has made it possible for many to continue to work and provide vital family support. We need medication we can afford. The cost of Lucentis may cause some to have no choice but to accept blindness just when we dared to be hopeful. There must be a solution fair to Genentech which also allows us to retain sight. Talk about this with your retina specialist. Let him/her know of our gratitude for physician support of patients in this matter and of your concern about Genentech’s final decision.

Sources for this article came from Forbes.com, “Genentech’s Avastin May Limit Lucentis’ Potential” by Peter Kang; The New York Times, “Genentech in Competition With Itself on Eye Drug” by Andrew Pollack; The Wall Street Journal, “How Genentech Wins at Blockbuster Drugs” by Marilyn Chase; VentureBeat.com, Life Sciences, “The Temptation of the Dark Side: Genentech, Avastin and Macular Degeneration” by David P. Hamilton.