Now
Society research: More than test tubes
by Timothy Coetzee, PhD
Afew months ago I received a letter from a long-time
supporter who asked, “Why is
the Society funding research
to assess the impact of out-of-pocket health-related costs
on people with multiple
sclerosis and their families?”
He wondered why we would
commit funds to a project
that, while possibly important,
wouldn’t lead to a cure for MS.
He challenged us to explain
why we don’t just pour all of
our resources into laboratory
research.
At the Society, we take a
comprehensive approach to
research, and focus most of
our efforts and resources on
innovative projects to stop
progression, restore function
and end MS forever. However—
while we work to free the world
of MS—we need to ensure that
people who live with the disease
now have access to high-quality
treatment and care.
To advocate with insurers,
agencies, legislators and others,
we need verifiable statistics
and data on the true impact of
policies that may put people
with MS at a disadvantage for
accessing medical care and
therapy. Even if we discover all
of the answers tomorrow, we
will still need to figure out how
people can get affordable access
to everything.
Our Health Care Delivery
and Policy Research (HCDPR)
program addresses these and
other concerns. Led by the
Society’s Vice President of
Healthcare Delivery and Policy
Outreach, Nicholas LaRocca,
of people living with MS in
nursing homes?
The HCDPR program was
responsible for the design and
launch of the Sonya Slifka
Longitudinal MS Study—the
If we discover the cure tomorrow, we will
still need to figure out how people can get
access to it.
PhD, this program invests
$1 million to $2 million each
year in research projects that
help us understand how MS
affects people in their daily lives.
Some of the research questions
we’ve addressed through this
program include:
• How cost-effective are the
FDA-approved MS disease-
modifying therapies?
• What are the experiences
first study of its kind in MS—
which tracked a large, diverse
sample of people with MS to
understand how the disease
influences daily life, how effective
treatments are, and how people
with MS utilize healthcare. The
information we gathered in this
study fueled efforts to improve
quality of life for people with
MS and helped us advocate for
changes in policies with state and
federal governments.
Timothy Coetzee,
PhD, is chief
research officer of
the National MS
Society.
OCEAN ILLUSTRATION/VEER
