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September 2004
Dear Colleague:
I write to formally introduce myself to you in the new capacity of President and COO of the Sickle Cell Disease Association of America, Inc. (SCDAA). On the website you will find a copy of the press release developed upon my embarking on this new endeavor with you. We will not repeat the contents of that bio.
But let us say, however, how excited we are about the possibilities that lie ahead for our Association. I personally have been touched by sickle cell disease when over 40 years ago my little sister was lost to the disease. Never at that time did I think fate would bring opportunity, in this form, to assist others in having a better outcome in their lives.
We appeal to you now to let us work together to put a new face on the health disparity which sickle cell disease is and has been for too many years. Together we can bring this health disparity again into the general public knowledge such that we can improve the education levels of the public and medical community. Together we can, by soliciting your help, find the best practices that will help our clients and advance the biomedical world toward the cure we have long sought. By presenting a united effort we can expect the world to know what currently only a few know about the progress (and lack of progress) that has been made in this health arena. Together we can increase funding for research and client services.
With the unveiling of the stamp, which has been done as “mini-unveilings” in several areas across the country so far, we will and have increased our visibility and attention to the disease. At the National convention (Sep 29th -Oct 2nd) in Atlanta we will continue that increased publicity with the official stamp unveiling. I hope to see you there.
At the convention, we would like to address your particular concerns and share with you the vision for SCDAA over the next several years. I hope everyone will be encouraged to participate. We are planning for a successful and informative meeting. Afterwards everyone will be reinvigorated to again disseminate information, raise awareness and thereby further the goals of our Sickle Cell Disease Association of America.
Sincerely,
Willarda V. Edwards, MD, MBA
SCDAA, President and COO
Continuity
of Care
The
Role of SCDAA Member Organizations
One
in every 400 African
American babies has
some form of sickle
cell disease. One in
every 4000 American
babies is also born
with some form of the
inherited red blood
cell disorder. This
data, emerging after
a decade of newborn
screening, imposes new
challenges for SDCAA
Member Organizations.
Serving
as a bridge between
major breakthroughs
in sickle cell disease
and the affected community,
SCDAA Member Organizations
have the responsibility
to explain the significance
of major developments
to patients and their
families.
Many
SCDAA Member Organizations
provide counseling and
follow-up testing for
families of newborns
identified with a sickle
cell disease condition.
They help parents understand
the test results and
work to ensure that
infants with sickle
cell disease are given
appropriate health care.
SCDAA
Member
Organizations conduct
educational programs
for the general public
and selected audiences
such as health care
and social service providers,
policy makers, parents,
educators and students.
A high priority is place
on programs to educate
people of childbearing
age about the sickle
cell conditions and
to motivate them to
voluntarily be
tested for the trait.
The goal: reduce the
chances that a child
with sickle cell disease
will be born to parents
who did not know they
carried the trait.
Culturally
sensitive counseling
programs are provided
to anyone with positive
test results. These
sessions give the individual
an opportunity to learn
how that may impact
their personal or family
life. Expectant parents
are given information
to help them make decisions
in their own best interests
with respect to the
pregnancy.
Since
a majority of people
of childbearing age
who are at risk have
never been tested for
sickle cell trait, SCDAA
Member Organizations
make the test accessible
to the general public.
Some organizations provide
tests at convenient
times at their offices
or other locations in
the community. Others
collect blood samples
for analysis at local
laboratories while most
refer clients to an
approved laboratory
and pay at least a portion
of the costs of the
test. All SCDAA Member
Organizations engaged
in testing or referrals
for test also provide
sickle cell trait counseling.
When
a family member has
a chronic condition
such as sickle cell
disease, the entire
family is affected.
Illness creates barriers
that can impede the
patient’s ability
to take advantage of
opportunities for treatment,
education or employment.
SCDAA
Member Organizations
allocate a major portion
of the their resources
to providing assistance
for patients. Since
many Member Organizations
were founded, and are
managed, by individuals
whose own lives where
altered by sickle cell
disease, the program
managers have a unique
insight into the needs
of the patients and
their families
Member
Organizations provide
financial aid, referrals
and follow up for medical
care and social services,
disease adjustment counseling,
career counseling and
support groups.
Some
also provide other services
including tutoring,
educational or training
scholarships and stipends,
amenities for hospitalized
patients and an opportunity
for teen retreats or
residential summer camp.
SCDAA
Member Organizations
are created to serve
the sickle cell community
and by so doing maintain
the continuity of care
that will enable patients
and their families to
live a life that is
uncompromised by sickle
cell disease until a
cure is found.
PRESIDENT
BUSH SIGNS THE SICKLE
CELL TREATMENT ACT
SCDAA is proud to
announce that President
George
W. Bush signed the
bipartisan Sickle
Cell Treatment
Act of 2003
(S.874/H.R. 1736)
into law. The Sickle
Cell
Treatment Act, which
was approved by Congress
on October 7, was
sponsored by U.S.
Senators Charles
Schumer (D, New York)
and Jim Talent (R,
Missouri); and Representatives
Danny Davis (D, Illinois)
and Richard Burr
(R,
North Carolina).
The Sickle Cell Treatment
Act became a reality
through the efforts
of patients and their
families, policymakers
and advocacy groups,
including SCDAA. We
would like to extend
a special thank you
to the National Medical
Association, the American
Medical Association,
the Congressional Black
Caucus, and the NAACP
for working to support
all who suffer from
sickle cell disease.
The
bipartisan effort
to pass this legislation
and the president’s
approval gives hope
to millions of sickle
cell patients who are
not receiving the quality
healthcare they deserve.
The legislation allows
states to receive federal
funding for patient
counseling, educational
initiatives and community
outreach programs.
Patients can also receive
federal matching funds
for sickle cell disease-related
services under Medicaid.
The new law also sets
the groundwork for
the development of
40 sickle cell treatment
centers located across
the country and establishes
a National Coordinating
Center for Sickle Cell
Disease.
The Sickle Cell Treatment
Act marks a significant
victory in the fight
against Sickle Cell
Disease. SCDAA is pleased
to know that this new
law moves us closer
to our goal of finding
a universal cure for
sickle cell disease
and improving the healthcare
of those affected by
sickle cell.
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