----- Original Message -----
From: "Penny Reeder" <[log in to unmask]>
To: <[log in to unmask]>; <[log in to unmask]>; <[log in to unmask]>
Sent: Tuesday, April 02, 2002 4:29 PM
Subject: A Setback for People Relying on Medicare for Treatment of
Age-Related Macular Degeneration







Contact:

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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