We
often say that Myeloma patients can be their own best “advocates” by getting educated about myeloma, its treatments,
MM lab markers, and more. However, there’s another meaning to “Advocacy”
which this section addresses: What opportunities are there for us to be pro-active
advocates when it comes to raising awareness and dollars that, in turn, can result in more drug development, treatments, and
maybe even a possible cure?
Besides
the Federal Government, there are 3 non-profit organizations that fund research and lobby the government specifically for
myeloma:
All
of these sites have information on ways to volunteer, raise monies, make donations, and even get involved in the political
process of how the government funds cancer research programs. As “political
advocates”, we can write our Federal and State legislative representatives, share our stories with them, and indicate
how important it is to develop more treatments for myeloma, which, in turn, can help the development of other cancer treatments. If you don’t know who your federal and state reps are or how to contact them,
check the federal web sites at http://www.house.gov/ and http://www.senate.gov/, and California at http://www.legislature.ca.gov/. Write your representatives to share your story and difficulties you’ve
encountered while battling your Myeloma. These subjects can include your experiences
with treatments, insurance, employment, drug costs and more.
In
fact, there are organized trips during the year that enable you and other Myeloma patients to share your stories face-to-face
with your elected officials. Current trips and/or contacts during 2006 are listed
below but these may sometimes change so stay in touch with the contact. Get involved…because
it matters to us!
IMF
MMRF
See www.multiplemyeloma.org and visit the Advocacy section or contact Anne Quinn Young at quinnyounga@themmrf.org.
LLS
LLS Advocacy Trip to DC typically occurs in March. See www.lls.org and visit the Advocacy section to receive advocacy email bulletins. Contact
for these events is Kimberly Hughes-Gibson at hughesk@lls.org or 202-542-7033 ext 2.
LLS Advocacy Trips to local offices of Federal reps as well as Sacramento state representative: You should contact your closest LLS office and ask for Patient Services Mgr at:
San Francisco LLS: Susan Beutler 415-581-1164
San Jose LLS: Lisa McGrath 408-271-8303 or Candy Hauan
