Horizons Issue 3 2011 - National Gaucher Foundation

supportive but don’t want to think it could happen to them. And
others don’t want to deal with it at all,” Sullivan said.
“I might question them about their understanding of how they
got it,” Sniderman King said. “If they don’t know, would they
like to know more about it Then we can review the pattern of
inheritance and what the chances are of other family members
having the disease.”
Creating Connections
The hardest part of the work, Sullivan said, isn’t dealing with the
differing family reactions, or visiting families in their homes but
finding enough time to be there for everyone who needs help. – “A
lot of times it just requires a lot of empathy,” she said, “sometimes
putting families in touch with other families is helpful.”
“The stressful part of my job is trying to have enough time for
all of my patients – having enough time to reach out proactively
instead of just being reactive,” Sullivan said. “It’s the geography.
It is difficult to be everywhere at all times. That is our biggest
downside at this point.”
The satisfactions come, Sullivan said, when families find
strength and solace in the information they receive, and when
families meet other families who suffer from the same illness.
“I want to be able to connect with everybody. Not everybody
needs my services, but my goal is to help reach everyone and
identify areas where I can be of help to them,” Sullivan said. “If
they don’t need anything, then great. Then they know they have
one more person in their corner, and who doesn’t need one more
person in their corner”
Patient Perspectives on Patient Education Liaisons
By Cheryl Alkon
Albert McWilliams
Before Albert McWilliams collapsed while working as part of the maintenance
crew at a local Walmart, he’d never so much as had a cold. After he
collapsed, he was rushed to the hospital and learned he had a hip fracture.
Albert and his wife Donna were mystified as doctors tried but failed to
figure out what was wrong.
McWilliams was erroneously diagnosed with backaches, muscle
spasms, osteoporosis, and Paget’s disease. After a frustrating 2 years —
during which he was in constant pain from the waist down, bedridden, and
once begged to have his legs cut off because his pain was so severe — a
doctor finally told him he had Gaucher disease type 1.
But he still didn’t get the optimal care he needed right away.
“We went through 3 years when we were searching for doctors that
could provide the care we needed,” said Donna, now 52, his wife of 20
years. “[Albert] was on half doses of Cerezyme ® (imiglucerase for injection),
and a doctor tried to get him weaned off it” because the physician, at the
time, didn’t understand that such therapy is lifelong.
Frustrated, Donna went online to learn more as she and Albert, now 60,
moved to Memphis, Tennessee. Through Genzyme’s website, Donna found a
nearby doctor who was an expert in Gaucher disease type 1, and also met
Marcella Lawrence, a Genzyme Patient Education Liaison (PEL) based in
Tennessee. Lawrence was able to help the McWilliamses receive the care
— medical and emotional — that they needed.
And for the first time, Albert and Donna didn’t feel so alone.
“We were invited to a Christmas party [a patient meeting organized by
Lawrence and sponsored by Genzyme] and got to meet other people,” said
Donna. “We had never met others with Gaucher before.”
“Marcella would take the time to help us through emotionally, said Donna
McWilliams.” Today, 9 years after first being diagnosed with Gaucher disease
type 1, her once-bedridden husband can walk with a cane and “has a life again.”
“I put out fires, and I do a lot of patient meetings,” said Lawrence, who
has worked as a PEL for 7 years and oversees approximately 400 patients—
including about 250 with Gaucher disease type 1—in Tennessee, Georgia,
Mississippi, and Florida. “It’s the best job, because we have the luxury of
working so closely with the patients. I believe it’s one of the most satisfying
jobs at Genzyme.”
“The amount of information she shared with us—it helped us realize
we weren’t the only ones dealing with this,” said Donna McWilliams.
“Seriously, we wouldn’t know what to do without Marcella.”
Nancy McCorry
When Nancy McCorry’s health insurance changed in 2010, she worried
about how her Gaucher disease type 1 care might change. The New Jersey
resident, now 45, had been receiving infusion therapy at a hospital for the
prior 5 years but learned she would qualify for home care infusions with
her new coverage.
“When I was meeting a new nurse for the first time, I felt nervous as to
how the infusion was going to go,” she said. “I wanted to be comfortable
knowing she knew how to handle the medicine, how to mix it, and how
to infuse it.” McCorry’s PEL, Kathleen O’Keeffe, has worked for the past
5 years with approximately 300 patients in New York and New Jersey.
O’Keeffe talked to the new nurse and even attended McCorry’s first home
infusion visit to help oversee the process.
“They [the patients] can sit with us and share their comments, concerns,
and stresses,” O’Keeffe said. “We provide ongoing support to all patients
that have signed HIPAA (Health Insurance Portability and Accountability
Act) consent with Genzyme. We help support the management of any
clinical issues and adherence to treatment recommendations. We then
help facilitate this information back to the patient’s primary physician and
healthcare advocates to help optimize their care.”
“Kathleen was so knowledgeable, personable, and approachable, and I even
learned a lot about my own disease that day,” said McCorry. “My new nurse
did as well, and it was a great experience for all. After my treatment, that day,
Kathleen followed up with me and gave me great comfort that I was in good
hands. And almost a year later, I still love my new nurse. Kathleen was instrumental
in making the transition completely seamless and nonstressful.”
8 Horizons / Winter 2011/2012 Please see accompanying full Prescribing Information.