What is Advocacy?
We often say that myeloma patients can be their own best advocates by getting educated about myeloma, its treatments, lab markers, and more. However, there’s another meaning to “advocacy”: What opportunities are there for us to be proactive advocates, raising awareness and dollars that can result in more drug development, treatments, and maybe even a cure?
These non-profit organizations that fund research also lobby the government specifically for myeloma:
These sites have information on ways to volunteer, raise monies, make donations, and 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 www.house.gov and www.senate.gov, and California at 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.
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 are listed below but these may sometimes change so stay in touch with the contact. Get involved — because it matters to us!
International Myeloma Foundation (IMF)
See www.myeloma.org/ and select the Advocacy tab.
Leukemia and Lymphoma Society (LLS)
The LLS Advocacy Trip to DC typically occurs in the Spring. See www.lls.org and under the Ways to Help tab, select Be an Advocate for LLS.
Within our support group contact Ed Jaramillo or Jack Aiello at About Us for more information about Advocacy.