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Duke Comprehensive Sickle Cell Program Gets Boost After Losing NIH Funds

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Duke Health News 919-660-1306

DURHAM, N.C. -- Felecia Tate is convinced her daughter,
Colette, would have died if it weren't for Duke doctors'
fast-thinking. When Colette was 3, her spleen became
dangerously enlarged – a severe but not uncommon complication
of sickle cell disease.

"The doctors at the Duke emergency department knew
immediately what was going on because they specialize in
treating sickle cell patients," Tate said.

Now Tate fears the care and support that her daughter so
desperately needs to stay healthy will disappear. On March 31,
NIH funding for the Duke-UNC Comprehensive Sickle Cell Center
ran out, with no plans for the money to be reinstated.

Duke has provided $350,000 to keep the program running for
Duke patients and will do so as long as the money lasts, said
Dr.Ralph Snyderman, chancellor for health affairs and CEO of
the Duke University Health System, but future funding remains
uncertain.

"This program is essential to the many patients we serve
with sickle cell disease," Snyderman said. "It is, indeed,
unfortunate that this program -- one that has developed into a
national model -- has not been funded by the National
Institutes of Health. But despite the lack of available funds,
Duke is committed to doing what it can to support those
affected until stable funding can be secured."

A total of $250,000 will come from the Duke Clinical
Development Fund and $100,000 will come from Duke University
Hospital.

UNC Hospitals is considering a similar contribution as a way
to fund the program in areas they traditionally serve, such as
Orange County. Meanwhile, Duke and UNC will continue to lobby
NIH to reinstate the funds for next year, said Dr.Marilyn
Telen, director of the Duke-UNC Comprehensive Sickle Cell
Center.

"There has always been a collaborative effort between Duke
and UNC to provide patients throughout North Carolina with the
support and treatment they need to cope with this debilitating
disease,"said Telen. "We're now trying to determine ways to
make sure that patients continue to receive the same services
they always have."

Sickle cell patients require ongoing medical care to cope
with the pain and medical complications caused by the inherited
disorder in which red blood cells become stiff, sticky and
sickle-shaped. When the misshapen red cells go through the
small blood vessels, they can clog blood flow, causing pain and
damage to surrounding tissues. While there is no cure, sickle
cell disease no longer claims all of its victims in childhood
thanks to newer and better treatments, Telen said. Patients
today often live well into their 40s with the disease, because
of therapies that reduce the number and severity of painful
episodes.

But more than just medical care is required to sustain
sickle cell patients, Telen said. At Duke, for example, the
sickle cell program provides adults and kids with access to
educational resources, support groups and social workers. Staff
members are even exploring the possibility of providing
low-cost housing for a limited number of eligible patients.
Such resources are vital to patients who have been unable to
adequately prepare for life as an adult, said Elaine Whitworth,
director of the Education Research Division at the Duke
Comprehensive Sickle Cell Center.

"A lot of adult patients were raised during a time when they
did not anticipate they would live to reach adulthood,"
Whitworth said. "So they are often unprepared for a career or a
family, because their teenage years were spent in and out of
hospitals, anticipating not seeing their next birthday. These
funds are vital in helping provide them with proper treatment,
educational resources and the support they need to be
successful members of the community."

Living with sickle cell disease can be frustrating,
Whitworth said. Patients try to be self-sufficient, yet they
have little control over painful and debilitating medical
crises that occur suddenly and unpredictably, she said. Such
episodes often require hospitalization, resulting in lost wages
or missed school time.

During the rough times, Felecia Tate said she has relied on
Duke, not only for medical care but for emotional support.
Coping with her daughter's chronic illness has been hard,
considering that Tate herself suffers from the disease. At age
16, her condition was diagnosed at Duke, bringing her much
needed validation that the chronic pain she suffered with for
years was more than just "growing pains," as her local doctors
had claimed.

"It was emotionally devastating to be told nothing was
wrong," Tate said. Since she's been coming to Duke, the social
support has been a crucial element in her own and her
daughter's treatment, she said.

"There are people in place willing to listen, not only about
the physical aspects but the emotional aspects. Sometimes you
get tired of hurting, and to know someone is there who cares,
that makes all the difference."

Recently, Tate took her message to Washington, D.C., where
she and more than 50 patients, family members and care-givers
from around the state met with legislators about the need for
continuing sickle cell funding. Her support group intends to
keep up a letter-writing campaign aimed at reinstating NIH
funding to the Duke-UNC Comprehensive Sickle Cell Center.

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