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Rare disease, common problem Multiple myeloma causes a financial crunch for seniors
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Hosie and Elaine Crawford of Jackson expected retirement to be about

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"I had no idea what people were talking about when they said about buying

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Rare disease, common problem Multiple myeloma causes a financial crunch for seniors
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Hosie Crawford retired in 2001 from MacSteel and a year later was diagnosed
with multiple myeloma, a cancer of the plasma cells. In June, he had a stem-

cell transplant at the University of Michigan Hospital in Ann Arbor.
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Between his prescriptions and those for his wife, who had a heart attack three
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"We heard that and I thought, oh my goodness," said Elaine Crawford. "This is
for anti-rejection medicine but because they used Hosie's own cells, we are
sure hoping he won't need the medicine."
Hosie Crawford, 68, had a $7 co-pay for prescription medicine at MacSteel, but
that ended upon retirement.
"If I would have known I was going to be diagnosed with this so soon after
retirement, I sure would have kept working," he said.
The Crawfords are caught in the same financial predicament that many people
their age find themselves in these days regarding health care.
But as alarming to them as the money is the growing number of friends and
acquaintances who have been diagnosed with multiple myeloma. It is called
multiple because multiple patches or areas of bone marrow are affected. It is
rare, accounting for 1 percent of all malignant diseases.
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Rare disease, common problem Multiple myeloma causes a financial crunch for seniors
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"We were told it is a rare disease, but I asked the (American) Cancer Society
what rare means because it seems to be a fast-growing cancer in Jackson,"
said Elaine Crawford, 68, noting that she and her husband know at least seven
people, all black, with the diagnosis.
Since 1986, 109 Jackson County residents have been diagnosed with multiple
myeloma, according to the Michigan Department of Community Health, but
there are no figures for mortality rates.
More than twice as many blacks are diagnosed with it, compared to whites and
Asians, and more men than women are affected, according to the International
Myeloma Foundation in Los Angeles. But doctors aren't sure why or what
causes it.
"Detroit has one of the highest incidences (of myeloma) in America, especially
among males, and it is alarming when we see these rises," said Susie Novis,
foundation president.
"Myeloma has been around forever, even in Egyptian mummies, but it was
always a smaller cancer. However, we are seeing an alarming number of
people diagnosed with it."
The American Cancer Society has recorded 15,200 new cases of it this year,
and 11,000 people have died from myeloma this year.
It was once a disease seen in people over 65, but now younger people are
being diagnosed. Novis' husband, Brian, was diagnosed when he was only 33
years old and he died in 1992. He started the foundation "out of frustration,
because when he was diagnosed in 1988, there wasn't much information out
there. The big story now is there are drugs, such as VELCADE, that are getting
phenomenal results with putting people into remission," Novis said.
The foundation has deliberately gone global, working with doctors and patients
and their families in 106 countries. A new effort is called "Bank On A Cure," a
DNA bank "to learn why some therapies work for some and not others. We
hope to do customized medicine so there is less exposure to side effects,"
Novis said.
Because myeloma affects everyone differently, finding the right medicine takes
time. And changing drugs is expensive if a person does not have prescription
coverage.
"We were paying $200 for some of the prescriptions and then a couple days
later, the doctor changed it and we couldn't do anything with the pills we had
purchased," Elaine Crawford said.
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Rare disease, common problem Multiple myeloma causes a financial crunch for seniors
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One drug caused Hosie Crawford to get pneumonia, and VELCADE caused
neuropathy in his legs. Now their pharmacist gives him only a 10-day supply of
a new medication until he know it will be tolerated by his system.
Many Jackson-area patients, including Crawford, seek treatment with the
Center for Hematology-Oncology of Southern Michigan, 1100 E. Michigan Ave.
"There are new opportunities (with medicines) we didn't have even 24 months
ago," said Dr. John Axelson. "If we determine a person is a candidate for a
bone marrow transplant, that necessitates a certain sequence of treatment."
Despite multiple options, Axelson said Medicare coverage for pills has "lagged
way behind. We live in a world where medical options are available, but not
everyone has the insurance to cover them."
Researchers don't think the disease is genetic, although no studies have been
done. But don't tell that to Donna Lay of Jackson, among the seven people the
Crawfords know with the diagnosis.
"My dad and aunt both had back and hip problems, just like me, but they
weren't diagnosed with it," said Lay, 67. "They didn't say the words multiple
myeloma, but they were written on my dad's death certificate."
Her father died 40 years ago and Lay was diagnosed with it in 1998.
Like Hosie Crawford, Lay said she was in excellent health until she was struck
with severe back pain.
"One doctor thought it was something with my spinal cord and I had an MRI
and X-rays, but he didn't feel comfortable with a diagnosis," Lay said. "So I
went to the Cleveland Clinic for bone-marrow testing and you learn the results
the same day. They got right on it with chemotherapy."
Four years ago, she had a bone-marrow transplant at UM and continues to
have occasional chemotherapy treatments.
Lay retired nine years ago from Jackson Community College, after working 28
years, most recently as secretary to the dean of students. She has "good
insurance, thank the Lord" and now volunteers as office secretary at Second
Baptist Church, 304 E. Prospect St.
When Hosie Crawford had his transplant, Elaine Crawford said the UM social
worker suggested they "get involved in fund-raising." Their church, Second
Baptist, was set to have a musical fund-raiser, but it was postponed because
of a scheduling conflict with the musicians. They plan to reschedule one soon.
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Rare disease, common problem Multiple myeloma causes a financial crunch for seniors
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The Crawfords are grateful for the help, though any one-night fund-raiser is
smal potatoes to what it will cost them. Medicare, they said, won't pay for
prescriptions unless they are given when Hosie Crawford is hospitalized or at a
doctor's office.
They also are exploring a friend's suggestion to check with the Veterans
Administration about helping with prescription payment; Hosie Crawford is a
U.S. Army veteran.
But the couple refuses to have a pity party.
"We don't talk doom and gloom," said Elaine Crawford, who owned and
operated It's All Good, a restaurant in Jackson for six years.
"We know this is life-threatening, but if we focused on that aspect, instead of
concentrating on the good medical care Hosie is getting, it would be hard. I feel
good the doctors we have chosen all have very spiritual outlooks."
She recalled the Sunday morning she sat in the church pew, overcome with
emotion about this unexpected turn of events.
"I felt so alone and when the pastor invited people to come forward I got up
and asked the congregation to pray that God takes us to a rock higher than
where we are, and make every day the best," she said.
And it is, she said, saying she and her husband have recommitted themselves
to their marriage of 40 years.
"I wouldn't trade this time for anything," she said. "We are going on faith and
when you have faith, you aren't afraid."
-- Reach reporter Monetta L. Harr at mharr@citpat.com or 768-4972.

Š 2004 Jackson Citizen Patriot. Used with permission
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