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Charles Crawford American Council of the Blind 202.467.5081	Jennifer Silberman Issue Dynamics Inc. 202.263.2933

Medicare Coverage Reversal for
Treatment of Serious Eye Disorder
Dismays Disability and Aging Advocates

Organizations Vow to Fight Reversal of Medicare Ruling on
Treatment for Age-Related Macular Degeneration (AMD)

Washington, DC, April 2, 2002 - Leading disability and aging organizations today announced their determination to fight the March 29, 2002 decision by the Centers for Medicare and Medicaid Services (CMS) to deny national Medicare coverage of ocular photodynamic therapy (OPT) with verteporfin ("Visudyne") for the treatment of age-related macular degeneration (AMD) with occult lesions. By reversing its October 2001 decision to expand the national coverage policy for this treatment, CMS has denied Medicare beneficiaries access to the only effective treatment available to prevent this condition which is a leading cause of blindness in people aged 50 and over.

The organizations joining forces to prevent vision loss and oppose the CMS action include: The American Association of People with Disabilities (AAPD), the American Council of the Blind (ACB), the Alliance for Aging Research and the American Macular Degeneration Foundation.

"We are deeply saddened at the specter of people losing their vision when the outcome could have been so different and so positive," said Charles Crawford, Executive Director of the American Council of the Blind. "The harm done by this decision is sufficiently severe to warrant continued advocacy aimed at reversing this tragic decision."

AMD involves the deterioration of the central region of the retina called the macula, which results in a severe and irreversible loss of central vision. The National Institutes of Health estimates that 1.7 million elderly Americans, or 5 percent of the total population over 65 years of age, have some degree of vision loss due to AMD.

A recent report released by the National Eye Institute found that blindness is one of the most feared disabilities. By reversing its original decision, CMS has denied Medicare beneficiaries with AMD their only therapeutic alternative. According to the Vitreous Society -- the largest national organization of doctors specializing in diseases of the retina and vitreous body of the eye -- at least one out of four Medicare beneficiaries will be denied entitlement under the Social Security Act as a result of this non-coverage decision.

In October 2001, CMS issued a national coverage decision memorandum, announcing the agency's intention to cover OPT with verteporfin for AMD patients with occult lesions. At that time, CMS estimated that approximately 35,000 to 70,000 Medicare beneficiaries would benefit from this decision, tripling the number helped by this treatment. CMS's announcement prompted the Secretary of Health and Human Services (HHS) to issue a press statement on October 19 saying: "By expanding access to this important new treatment, we are improving the quality of life for many Medicare beneficiaries."

The March 29 reversal by CMS is particularly troubling given Secretary Thompson's recent statement in the latest issue of Inside CMS, (March 28, 2002) that "Healthy vision is a shared responsibility among the government, health care providers, community leaders, and the public."

"The American Association of People with Disabilities is baffled by CMS's decision to deny Medicare coverage for a therapy that is considered the 'standard of care' by the American Academy of Ophthalmologists and by retinal specialists across the country," said Andrew J. Imparato, President and CEO of AAPD. "Now only the wealthy will have access to this sight saving treatment for AMD, the leading cause of blindness in the Medicare population."

Speaking on behalf of The Alliance for Aging Research, Executive Director Dan Perry said: "This decision will almost certainly result in a greater number of older people losing their vision for lack of access to the best possible treatment for AMD. Vision loss among older people is a prime cause of lost personal independence. Preserving independent living for older Americans should be a higher goal of our public policy."

Also joining in criticism of the CMS reversal, Chip Goehring, President of the Board of Trustees of the American Macular Degeneration Foundation, said, "This decision means that thousands of Medicare beneficiaries will needlessly lose their sight. This therapy provides not only significant benefits, but hope to the thousands of seniors diagnosed with AMD each year. Our fear that treatment only will be available to seniors who can afford it has suddenly become a reality."

For a full description of the decision, refer to the CMS website link www.hcfa.gov/coverage/8b3-ee7.htm. The above organizations encourage comparing this decision with the original Decision Memorandum document posted on October 17, 2001 by CMS regarding their intention to reimburse Visudyne for occult lesions.

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