CONSORTIUM FOR CITIZENS WITH DISABILITIES (CCD)
April 8, 1998
Secretary Donna E. Shalala
Department of Health and Human Services
615-F Hubert H. Humphrey Bldg.
200 Independence Avenue, S.W.
Washington, D.C. 20201
Dear Secretary Shalala,
We write to you in the strongest terms possible to direct your attention
to
a legal case (Desario v. Thomas, No. 97-6027, U.S. Court of Appeals, 2nd
Circuit, February 24, 1998) that has the potential to make a mockery of
the Consumer Bill of Rights. The Desario case invites States in the
Medicaid
program (as well as private employers and private insurers) to rely on
exclusive lists to contain health care costs by limiting benefits to the
needs of the "average patient" without regard to quality outcomes or
consideration of medical necessity for individual patients, especially
children and adults with disabilities or chronic illnesses. With the
deadline looming to
request a rehearing of the Desario case, we ask you to weigh in on this
critical issue in the most immediate manner possible.
To avoid legitimating a dangerous precedent that would seriously
undermine
meaningful access to covered services for persons with disabilities, the
CCD
Health Task Force implores you to clarify the appropriate use of
lists by Medicaid programs with adequate consumer protections that
contain
effective procedures that allow for exceptions on the basis of medical
necessity and ensure that lists are updated based on new developments;
acknowledge the vulnerability of Medicaid patients who do not have the
resources to go elsewhere for medically necessary treatments as the
judges
suggest; and clarify that discrimination on the basis of diagnosis or
condition is a violation of the Medicaid statute. Considering the
far-reaching implications of this case, we believe the Department should
issue a policy clarifying the State's obligations under the Medicaid
program
which we think the Second Circuit panel has misconstrued, or at least
join
the plaintiff-appellees in requesting a rehearing of the Desario case
before
the full Second Circuit Court of Appeals by the filing deadline of April
10th. The plaintiffs' petition for reconsideration of the Second Circuit
panel decision has been joined by 14 national organizations and 32 state
and
local organizations representing a wide-range of disability and disease
specific groups (see attached list) participating in an amicus brief.
A three judge panel of the Second Circuit Court of Appeals has reversed a
federal district court ruling in the Desario case that prohibited the
Connecticut Medicaid program from relying on an exclusive list of durable
medical equipment (DME) to deny all requests for specific items of DME
that
were not on the list but were consistent with the definition of the
covered
benefit category and were determined to be medically necessary by the
plaintiffs' treating physicians. In our view, the judges misconstrued a
brief submitted by the Department of Health and Human Services under your
name, which explained that States can determine the "amount, duration,
and
scope of services" under the Medicaid program and discussed the use of
lists
generally, but did not address the use of exclusive lists which is
central
to the Desario case. The position adopted by the Second Circuit is
inconsistent with Department policy on exclusive lists for drug
formularies,
inconsistent with transplant guidelines
based on considerations of medical necessity, inconsistent with Medicaid
policy letters for different types of DME, inconsistent with the
operation
of Medicaid programs throughout the country, and inconsistent with every
federal court decision that dealt with the authority of state Medicaid
programs to exclude particular types of treatment within a Medicaid
coverage
category. In addition, the position of the Second Circuit undermines the
value of an entitlement to Medicaid by permitting the denial of medically
necessary treatments for Medicaid
recipients for covered services that are not on an exclusive list.
Not content to set aside thirty years of legal precedence in the Medicaid
program, the three judge panel then explained that the appropriate test
of
whether the Medicaid program is meeting the federal requirement that
"[e]ach service is sufficient in amount, duration, and scope to
reasonably
achieve its purpose" is whether it meets the needs of the Medicaid
population as a whole rather than the needs of individual patients who
may
have rare,
unusual or costly treatment needs. In unambiguously brutal candor, the
three
judge panel explained that a Medicaid program could withhold medically
necessary treatments within the criteria of the benefit category even if
it
imposed a "death sentence" on some Medicaid recipients.
Recognizing the vulnerability of persons with disabilities who often have
higher cost health care needs in a health care system which is oriented
to
profit in the absence of effective mechanisms to spread risk throughout
the
population, it is crucial that the Department of Health and Human
Services
demonstrate through the Medicaid program the standards of public
accountability which are needed for all insurers to respect. Having seen
the
unfortunate stalemate that occurred in the Advisory Commission on Quality
in
the Health Care Industry when employers and health plans refused to be
bound
by a standard benefit package, it is extremely important that insurers
not
be permitted to deprive persons with rare, unusual or costly treatment
needs
equal access to medically necessary services which are consistent with
the
criteria for covered benefit categories, provide life saving or other
therapeutic benefits, represent the current generally accepted standard
for
medical practice for specific conditions, and for which there are no
other
equally effective, less costly alternatives.
In the health care marketplace where 10% of the population accounts for
72%
of otal health care expenditures, insurers are well aware that the needs
of
people with rare or medically complex conditions actually represent a
small
percent of the population but account for a large percent of total health
care costs. The Second Circuit judgment in the Desario case legitimates
discrimination on the basis of diagnosis which substitutes a form of
"statistical necessity" for "medical necessity", and represents a
significant threat to every person who may develop a rare, unusual, or
costly treatment need in the future. On behalf of the Health Task Force
of
the Consortium for Citizens with Disabilities (CCD), we urge you to take
action on the Desario case before a precedent is set which
is extremely dangerous for children and adults with disabilities and
chronic
illnesses.
Sincerely yours,
CCD Health Task Force Co-chairs:
Bob Griss (Center on Disability and Health) (202) 842-4408
Kathy McGinley (The Arc) (202) 785-3388
Jeff Crowley (National Association of People with AIDS) (202) 898-0414
Peter Thomas (Brain Injury Association) (202) 466-6550
--------- End forwarded message ----------
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