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Duke Physician Successfully Treats Sickle Cell Anemia Patient for Hepatitis C

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Duke Health News 919-660-1306

She was mysterious, veiled in black, surrounded by the men
in her family. But despite cultural and language barriers, Huda
Al-Saadi made her wish clear to Duke physician Dr. Mark Swaim.
As a mother of three young children, she would do whatever it
took to help her live longer. As a result, Swaim tried a novel
therapy that may turn out to help many people in Al-Saadi's
country as well as others worldwide who suffer from a double
scourge ñ sickle cell anemia and a hepatitis C infection that
can lead to liver failure.

While drugs exist that can treat hepatitis C infections in
the general population, they have not been tried on people with
sickle cell disease. Physicians fear the harsh medication will
provoke anemia, among other unknown side effects, which could
lead to a crisis of blood sickling.

The reality is that while up to a third of sickle cell
patients are believed to be infected from tainted blood
transfusions, doctors do not test them for the virus because
they consider it untreatable.

That is, before Al-Saadi met Swaim.

She came to Duke last July from the United Arab Emirates,
whose minister of health sends citizens in need of advanced
care abroad. Al-Saadi was, as she described it through a
translator, "physically and psychologically very, very
tired."

Not only did she have sickle cell anemia, which is commonly
inherited in the Middle East, but her hepatitis C infection was
beginning to alter her liver, and if left untreated, it could
lead to disability and death.

Hepatitis C is the most common blood-borne infection in the
United States, and potentially worldwide, and is the leading
reason livers are transplanted. It is estimated to afflict up
to 4 million Americans in the general population, many of whom
develop a simmering infection that will lead to some liver
damage. About 10,000 people die each year in this country from
cirrhosis, liver cancer and liver failure.

Because blood was not generally tested for hepatitis C until
1992, sickle cell patients were at high risk of getting the
infection because of their need for therapeutic transfusions.
Sickle cell anemia is caused by an abnormal type of red blood
cell that carries less oxygen than most blood cells and which
takes the shape of a sickle after it releases what oxygen it
does have. A sickle cell patient can suffer chronic anemia,
shortness of breath and fever and can have episodic crises of
severe pain caused by the clogging of the sickle-shaped cells
in small blood vessels. Before the cancer drug hydroxyurea was
successfully adapted for sickle cell use in 1995, many patients
needed multiple transfusions -- as Al-Saadi did.

Now the irony is that because hydroxyurea is making sickle
cell "more manageable," the "untreatable" hepatitis C infection
that many of these patients have may pose a bigger risk to
their lives, Swaim said.

So it was with Al-Saadi. And when she found out that
treatment exists for the infection, even though it isn't used
in sickle cell patients, she asked Swaim to try it.

Swaim knew that the drugs only worked in one out of two
people infected in the general population. And he said the
mechanism by which they work is not well understood. Both could
cause havoc to a sickle cell patient. Injections of interferon
three times a week revs up the immune system but can cause
severe flu-like systems. The antiviral agent ribavirin, just
approved for use last year, can produce sudden bouts of severe
anemia and depression, among other side effects.

"It was a reasonable thing to try because we felt we could
treat her sickle cell if it flared up," Swaim said. "But I
thought long and hard about it because Al-Saadi is a guest in
our country. A lot of such a decision as this rests with what
the patient wants and the amount of trust that is shared."

For her part, Al-Saadi said she felt she had a disease that
was going to kill her and that she had a right to try the
drugs. "Allah wants me to be treated," she said last week
through Duke translator Rose Samara. "It is written in the
Koran that for every sickness, there is a treatment."

To the delight of both the patient and the doctor,
Al-Saadi's viral "load" disappeared within three weeks of
starting her treatment last summer, and the infection has not
rebounded. She ended the medication in late January and her
"liver enzymes are completely normal," Swaim said. He closely
monitored her through six months of therapy, and she was
neither hospitalized for treatment nor did she suffer any side
effects.

But Swaim added that he cannot proclaim Al-Saadi completely
cured until several decades go by to make sure the infection
has not recurred. He added that he thinks that possibility is
"highly remote."

"We can't help but be excited about this treatment," said
Swaim. "It was a risk that paid off beautifully for this
courageous woman and we hope it will work for others." He said
that if the treatment continues to show success in patients, it
might eventually help thousands of sickle cell patients
worldwide infected with the virus.

Dr. Marilyn Telen, director of the Duke Comprehensive Sickle
Cell Center, said the advance is "certainly encouraging for the
significant number of sickle cell patients that have the viral
infection. There has been hesitancy in using hepatitis C
treatment in these patients, so I hope we can find a way to use
them successfully."

Al-Saadi told her story to the Durham Herald-Sun last week
before she left for home because she hopes the treatment will
help others in the Middle East, which is the global hot spot
for sickle cell. "I want to spread the message," she said. "I
want everyone to benefit from my experience."

Al-Saadi's therapy has been a pleasant success story for the
medical center's international program, which provided service
to about 150 patients from the Middle East last year, many of
them from the UAE. The program provided a seamless interface
between Swaim and Al-Saadi and earned nothing but praise from
both. "I just don't think of there being a language barrier,"
said Swaim, with a nod to Samara. "I wasn't treating a virus,
but a woman who wonders if she is going to be around to take
care of her children." The international office staffers
"deserve everything," Al-Saadi said.

"Here we are at Duke in Durham, North Carolina, touching the
world," said the program's director, Rita Weber, with just a
little awe. "We can provide the same relationship, the same
caring, the same excitement as treating the patient who lives
next door."

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