Page 14 - HFA Dateline 2021 Q3 Fall

AGING WITH HEMOPHILIA Osip, RN, NP, a former HTC nurse in the Minneapolis area.
Data on people aging with hemophilia are just starting And it’s why one of the first things Osip used to tell her
to emerge and aren’t yet definitive. There are the clients who were older was that they couldn’t depend
hemophilia-related conditions that Liedl described as well only on their HTC for all their care anymore.
as an increased rate of osteoporosis or osteopenia among
men with hemophilia compared to men their age without “As you get older, you need primary care,” Osip said. “If
hemophilia. your blood pressure is increasing or you need to start on
cholesterol meds, that routine maintenance is probably
But there are a number of ways that having hemophilia better for primary care.”
requires different care. For instance, routine screening
for colorectal cancer through a colonoscopy or While some HTCs also offer primary care, most HTCs, she
said, are set up only to manage hemophilia. And smaller
ones may not have the staff to add primary care or
As a database administrator,
Murali is well-qualified to keep ongoing management of non-hemophilia conditions. Just
track of all his medical records. like the men they care for, HTCs have to adapt to aging
needs, too.

“Nurses have to be trained in primary care,” Osip said.
“HTC nurses are used to managing bleeding and clotting
disorders; primary care is a little bit different.”

They will also refer you to specialists such as
nephrologists, oncologists and others to provide the
specialized care people need as they age.

Murali Pazhayannur, 61, of Aurora, Illinois, who goes by
one name, “Murali,” knows this better than most. Murali
lives with severe hemophilia A and has a primary care
provider. But he gets most of his care from specialists: an
endocrinologist for diabetes, nephrologist for kidneys and
so on.

He has also had two major surgeries in his life. In 2003,
Murali had a pseudotumor removed from his hip. The
result of a childhood growing up without hemophilia
treatment in India, the pseudotumor started as a small
a sigmoidoscopy are low risk for bleeds, but the bleed. But because it never stopped, the body walled
removal of colorectal polyps to prevent colon cancer off the bleeding, creating a football-sized pseudotumor
is not. Endoscopy to assist with cancer staging in the that compressed his femoral nerve and caused withering
gastrointestinal tract isn’t high risk, but doing the same and paralysis in his lower leg. That procedure, managed
procedure with the addition of a biopsy with a fine needle by a hemophilia expert, also included various specialists
is. The list goes on. because of how dangerous it was—carrying with it a 1 in 4
chance of death, he said.
As a result, the National Hemophilia Foundation’s Medical
and Scientific Advisory Council, known as MASAC, “Obviously I’m still living,” he quipped.
recommends changes in how someone doses prophylaxis
factor and other hemophilia treatments on the days So when Murali learned that his chronic kidney disease
before, on the day of and sometimes for a week after was threatening to force him to, in his words, be “tied to
treatment. And the risks of breakthrough bleeds increase tubes” for dialysis, he got on the kidney transplant list.
the older a person gets, according to the guidelines. After his pseudotumor surgery, the transplant he received
in 2015—with a kidney from his brother—seemed much
All of this calls for collaboration between hemophilia less complicated. However, because he receives his care
treatment centers (HTC) and treatment teams, said Joan at Rush Medical Center in Chicago and was having the

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