European patients need better AMD education, experts say

LONDON – With photodynamic therapy the only medical treatment for age-related macular degeneration currently approved for use in Europe, clinicians and the media must focus on patient education on the disease, researchers and patient advocates said here.

In the United Kingdom, five times more people have AMD than glaucoma, but patient education is lacking, said Prof. Alan Bird of Moorfields Eye Hospital. He and other experts spoke here at a panel discussion on AMD that focused mainly on patient education.

“It’s difficult to have a blanket suggestion about when people should get tested,” said Prof. Usha Chakravarthy of Queen’s University in Belfast. “We do not yet have the wherewithal to predict who will develop AMD, and there’s no good way yet of preventing it.”

Prof. Bird said that Macugen (pegaptanib sodium injection, Eyetech/Pfizer) is not expected to receive marketing authorization in the European Union until November of this year, and the U.K. National Institute for Clinical Excellence (NICE) committee is not expected to make any recommendations on reimbursement for the drug until late 2006 or early 2007.

“That doesn’t mean the National Health Service shouldn’t implement the therapy,” said Prof. Chakravarthy. “NICE is not the gateway to the NHS.”

Prof. Bird pointed out that the gap between the regulatory approval of photodynamic therapy and funding for the procedure from the NHS was 120 weeks.

“The situation with Macugen is not as dire as it was with PDT. Now we’ve got a precedent set,” said Steve Winyard, of the Royal National Institute of the Blind.

The therapy’s cost will be a factor, however, Prof. Bird countered. He said the NHS looks at the cost-benefit ratio for a procedure rather than the risk-benefit ratio when setting reimbursement levels.

Mr. Winyard told Ocular Surgery News that he believes reimbursement for Macugen could be authorized in as little as a year from its approval.

“We’re hoping it’s a much more linear process this time,” he said.

Prof. Bird said that, within the EU, about 25% of those with choroidal neovascularization in AMD have the classic pattern of CNV, and 35% have minimally classic CNV, which has been shown not to be as responsive to PDT as classic CNV.

Barbara McLaughlan, European coordinator of AMD Alliance International, said that potential future treatments for AMD include macular translocation therapy, which is being championed by U.K. patient advocacy groups; rheopheresis, which seems to be taking a leading role in Germany and in Israel; and gene therapy, which is giving hope to patient groups.