Useful tips to help caregivers
navigate the cost of care
When a patient receives bad medical
news, it can be a paralyzing moment. It’s
easy to see how any serious diagnosis can
shatter someone’s life into a million pieces,
but we often overlook what’s happening to
the caregiver who’s devoting their time and
energy to provide care. On top of the physical
and emotional demands, the financial
cost of caregiving is unavoidable.
What makes someone a caregiver? American
caregivers support patients in a variety
of ways. They can be young or old, live
close by or miles away and provide care full
time or part time. Many of us are caregivers
- for our children, parents, siblings or even
close friends. Maybe you are a caregiver who
provides “hands-on” care now, but may be
called upon to provide financial assistance
in the future. It’s crucial for caregivers to
make wise financial decisions about caregiving
- for their loved ones and just as importantly,
for themselves.
At 34 years old, Danielle Fontanesi had to
give up her job as a full-time attorney so she
could care for her husband, Matt. Matt was
fighting acute myeloid leukemia and needed
around-the-clock care while recovering from
a stem cell transplant. Fontanesi wasn’t able
to go back to work for more than a year, and
found it challenging to find a new job given
her employment gap, which cost her more
than $175,000 in lost income. The cost of relocating
next to a major cancer center where
Matt was treated was also substantial.
“Not only did I lose income, I lost a year
of career progression,” says Fontanesi. “We
still had to pay our rent, car payments and
hospital expenses, while not having income
during this period.”
According to Gwen Nichols, MD, chief
medical officer of the Leukemia & Lymphoma
Society(R) (LLS), Fontanesi is far from
alone in her financial plight.
“Again and again, we find that caregivers
make huge financial sacrifices to care for
their loved one,” Nichols says. “When you
tally up the losses, it’s quite astounding: loss
of wages, loss of health insurance, loss of retirement
savings and the list goes on. These
hold serious financial consequences for caregivers.”
Over time, the economic burdens of longterm
medical care can create added distress
for patients and caregivers that is often
called “financial toxicity.” Financial toxicity
occurs when growing out-of-pocket healthcare
costs lead to serious financial problems.
Out-of-pocket costs can include anything
from hospital stays or outpatient services to
medical equipment and medications.
To help caregivers navigate the cost of
cancer care for themselves and their loved
ones, Nichols offers these important tips:
Encourage your loved one to seek a second
opinion: When appropriate, caregivers
should help their loved one seek a second
opinion. A second opinion can help ensure
an accurate diagnosis, which can then guide
your loved one’s treatment plan. An accurate
diagnosis enables resources to be directed in
a way that offers your loved one the greatest
potential benefits, both in terms of a better
health outcome as well as financial impact.
When weighing multiple treatment options
or in circumstances of uncertainty, it’s also
helpful to gain a second opinion to help inform
the best course of care and avoid the
detrimental health effects and costliness of
incorrect or unnecessary treatments.
Help start a dialogue: It’s crucial to have an
open conversation with healthcare providers
about financial pressures. You and your
loved one should partner with their medical
provider to understand the cost of certain
services and treatments. This information
can help empower you and your loved one
to make the right decision for you and your
family. For example, your loved one may be
able to choose among treatments or select
providers or treatment centers that offer the
same or even greater potential benefit, but at
a lower cost.
Be an advocate for change: Your voice as a
caregiver is valuable, and can help shape discussions
about the cost of care. Whether you
act as an individual or part of an organized
effort by a patient advocacy organization,
you can make an impact by sharing your story
about the financial hardships you’ve experienced.
These firsthand accounts are vital
for spurring action. To learn more about LLS
Advocacy and how you can raise awareness
about the cost of cancer care, visit www.lls.
org/be-an-advocate.
Take advantage of available resources:
Caregivers are often hesitant to seek help
and are often unaware of the many resources
available to them at their fingertips. LLS has
free resources and support services such as
online chats with medical experts, support
groups, help with financial pressures, referral
to other helpful local and national resources,
and more. To learn more, visit www.lls.org/
support/caregiver-support.
Nichols also notes that it’s crucial to take
time for self-care and remember that your
family is your first resource, so don’t be
afraid to reach out to them for help. There
are many ways for friends and family to lighten
the load in this challenging time: assisting
with home repairs, running errands, or preparing
a meal. These kind gestures go a long
way when there’s financial strain. After all, if
you sacrifice your own health and well-being,
you won’t be at your best to effectively
care for a loved one. (BPT)
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