INTERNATIONAL
MYELOMA FOUNDATION
FOUNDATION
www
l
.mye oma.org
IMF Advocacy: Some History
yy
1998
Participated
p
in "The March"
Joined cancer advocacy community
2002
Susie Novis testifies to Congress on
behalf of cancer community
Doubling of NIH budget
2004
Thalidomide/off label
-
dr gs
u
appro e
v d
ed
by Medicare
Equipment
qp
for Bank on a Cure
2009
IMF Advocacy Principles guide
priorities in health care reform debate
IMF Advocacy: The Goals
CENTERED ON PATIENT PRIORITIES
· To hear IMF MEMBER concerns and translate
them into public action whenever possible
· To influence the public to act on the needs of
the myeloma community
· Ti
To prov d
ide opportuniti
ities
d
an t
l
oo s to convey
IMF MEMBER views to appropriate audiences
· To be proactive on policy and political issues
that may impact the myeloma community
IMF Advocacy: The Vision
THE FIVE PRINCIPLES
· Prevention is the key to reducing the
burden of cancer
· Continuing innovation is critical to early
diagnosis and better treatment
· Equality of
of access
access to care is imperative
· Early approval of new treatments for
deadly cancers is essential
· Patients who have exhausted approved
therapies need simplified access to
experimental agents whenever
whenever possible
IMF Advocacy in Practice
· Works with and for the myeloma community
yy to:
·
Shape public policy
·
Provide opportunities to make IMF voices heard
·
Make YOU aware of important issues that may affect
how myeloma patients are treated
· Focused on
on
·
Public policy issues that affect myeloma
·
Public awareness of myeloma issues
· Non-partisan
· Pragmatic
IMF Advocacy in Practice
· Non-partisan
p
does not mean non-politica
p
l
· Political decisions will be made about policy
choices like
·
Health reform (by Congress)
·
Medicare (by Congress and CMS)
·
Dd
Drug access and
l
approva s (b
(by FDA)
FDA)
·
State access issues (by state legislatures)
· If we aren'
aren t involved
involved, we
we can'
can t impact
impact decisions
in the interests of the myeloma community
IMF Advocacy: Key
yy Issues
AS PART OF HEALTH CARE REFORM
· Equality of access through insurance reform
· Eliminating the Medicare donut hole as
soon as possible
· Minimizing disparities in access
REGULATORY REFORMS THROUGH FDA
· Faster new drug approvals
· Earlier approval for broad drug use
· Easier access to investigational drugs
drugs
when needed
What We Do in Washington?
· We seek to inform and influence Congress
g
and policy makers about issues that affect
the myeloma community
· Wb
We esta li
blish
l
re
i
at onshi
hips
·
With specific senators and representatives
·
With their staff
staff and advisors
·
With others who share our interests
· Raise public awareness about issues that
·
Affect the myeloma patient community
·
Affect the myeloma research community
yy
What We Do at the Grassroots?
WHAT ADVOCATES CAN DO
GRASSROOTS ACTIVITIES
· "Spread the word" among the
· Distribution of "the Principles"
local myeloma community
(through support groups/SGLs)
· Call or write their
their representatives
representatives
· Advocacy training initiatives
to ask for specific actions
· Recruitment of additional
· Meet with their representatives in
advocates
their districts
· Planned letter-writing and call-in
· Come to special events in
campaigns
Washington or at state capitols to
· Planned meetings with legislators
advocate for specific actions
in their districts
districts
Grassroots Support
WE HAVE ALREADY
·
Opened an Office of Government Relations in Washington, DC
·
Appointed Christine Murphy as Director, Government Relations
·
Dl
Developed and t
s
t
ar ed to di
di t
s i
r b
ibute an advocacy tool kit
kit
WE WILL SOON
·
Develop a database of leg
pgislative and political information to
keep you informed and updated
·
Start to create and distribute Advocacy Position Statements
·
Have regular advocacy columns/articles
columns/articles in
in the
the Myeloma Minute
Minute
and Myeloma Today
·
Distribute IMF Advocacy Alerts and Updates to guide and
support grassroots communications and activities
Advocacy: Public Awareness
· Success is built on personal
p
stories:
·
For YOUR members of Congress
·
For YOUR state representatives
·
For local and national newspapers
·
For local and national TV and radio stations
·
For
e
w b
eb sites
sites and internet-based media
·
For other members of our community
· Keep your eyes and ears open for good
stories and let the IMF Advocacy Team
know
Advocacy: Public Awareness
TYPES OF STORY WE NEED
· Stories the public will understand
· Stories that "tug on people's heartstrings"
· About patients who can't see the doctor they need
· About patients who don't get the right treatment
·
Bt
Because h
th i
e r insurer
'
won t
't l t
e th
then have t
t
rea
t
men X
until they have failed treatment Y
·
Because they don't have good enough insurance
·
Because of the Medicare donut hole
·
Because they can't afford their co-pay
Advocacy: An Every
yyday Task
· Watch out for patients and others who think
advocacy is important
· Refer these people to the IMF Advocacy team
and vice versa
· For many
many such people, advocacy is
is part of
of the
the
therapy of dealing with MM
·People with a strong
pg sense of community
activism make great advocates
Until there is a cure...