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A Blindness Charity Wears Blinkers When It Comes to Pharma Cash and Cheap Drugs

Despite new evidence showing that two drugs for preventing blindness -- Lucentis and Avastin -- are "virtually identical" in their effectiveness, Britain's leading charity for the blind insists that Avastin, the cheaper drug, is "a bad move" for patients.

By amazing coincidence, the Royal National Institute for the Blind has received funding from Novartis (NVS), the company that sells Lucentis, which costs about 40 times more than Avastin. Novartis' support of RNIB -- and the charity's position that people suffering from age-related macular degeneration should not use the cheap therapy for it -- is old news. Novartis has been funding RNIB, and organizations that in turn support RNIB, for years.

But RNIB's dogged insistence that Avastin shouldn't be used, even following a gold-standard trial that showed the drugs are equivalent, is new. An RNIB spokesperson told InPharm recently:

"We believe that safety should not be compromised by cost and ultimately, this is what the government is looking to do.

"Health bodies and the government should look into making savings," she said, "but they are making a bad move by encouraging Avastin's use given the ongoing safety concerns surrounding the drug."

She said that Lucentis has been approved by regulatory bodies as safe and effective and judged to be cost-effective by NICE [the regulatory body that approves drugs for use in the U.K.'s National Health Service].
"From a patient's perspective, this is what we require and right now Avastin simply doesn't have this."
It is true as a technical issue that Lucentis has approvals from regulatory bodies that Avastin does not. But the idea that Avastin is less effective or less safe is mostly discredited. There were no significant safety issues raised in the NEI test. The only safety issues with the use of Avastin for AMD have been raised in a study funded entirely by Roche (RHHBY) and its Genentech unit, which make both drugs and have a vested interest in keeping eye disease patients paying for Lucentis rather than Avastin.

Follow the money
When I noted last year that RNIB's position in the debate appeared to be linked to the Novartis money in its bank accounts, the charity responded:

In a statement, the charity said that its position on the drugs "is in absolutely no way linked to any funding the charity might receive from pharmaceutical companies".
If Novartis' funding of RNIB "is in absolutely no way linked" to its opinions on the two drugs, there ought to be no harm in detailing just how dependent the RNIB is on Novartis:
  • This year, Novartis gave RNIB a £320,000 grant for eye clinics. It made a donation for a similar purpose in 2010, and worked with RNIB on to lobby British members of parliament.
  • Novartis' web site for Lucentis advertises the RNIB.
  • RNIB is lax when it comes to financial transparency. It has still not published its 2010 annual report on its website. But we know it also used Novartis funding in 2010 in its "Drivers over 55" eye-check campaign.
  • Novartis and RNIB worked on a joint AMD campaign in 2009.
  • The company was also reported as an RNIB funder in 2008.
  • And the pair worked together to appeal a decision by the a U.K. regulatory authority on blindness drugs in 2003.
  • Novartis has also funded the AMD Alliance, another blindness charity, since 2003. (It gave more money to the alliance in 2005.)
  • The AMD Alliance is one of RNIB's main funders, having given £33,000 to RNIB in 2009.
So, to recap: Apart from the funding, the lobbying, the advertising and the regulatory appeals, the RNIB has absolutely no conflict of interest with Novartis on the issues of AMD drugs.


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