Just as in any other area of civic life, there is an ongoing need for public involvement in BMT-related advocacy work at all levels. The first step is creating awareness about key issues by disseminating information, such as through websites like BMT Basics . The critical need for unrelated donors of genetically-diverse ancestries is ongoing, just as is the need for all the types of non-medical supports for patient families, and policy changes to ensure that all in need can benefit from BMT therapy.
There are many ways that patient families and those who care about them–from friends and relatives to perfect strangers–to get involved in BMT advocacy. Each person or group can make the effort that are possible for them, including:
- registering as a potential BMT donor and educating others to do likewise
- promoting and/or conducting and/or fundraising for donor recruitment drives
- donating your newborn’s cord blood and educating others to do the same
- offering emotional and practical support to individual patients and their families
- communicating with your elected officials about access barriers to BMT and other policy issues
- sharing your experiences with the public, in person and online
- seek out opportunities to serve on boards and committees of BMT-related agencies and organizations
It is important to remember that consumer efforts have already been vital in this field, from creating the first BMT donor registries and recruitment groups, demanding that services be humanized for patients seeking unrelated donors, and in calling attention to the inequalities in the unrelated donor pools and taking actions to remedy the situation.
However, the job of giving everyone a chance to benefit from BMT medical advances is far from over. It is ever more urgent now for concerned people to get involved, as the US population becomes ever more diverse and access to medical care becomes more difficult. On the donor side, much can be done to increase opportunities for BMT donor registration and cord blood donation, such as by utilizing examples from other states and countries, and making sure that equity principles are built into donor programs nationally and on the state level.Attention must focus also on ensuring that there is adequate coverage not only for donor testing costs but also of the personal needs of donors, both monetary and in terms of employment security.
On the recipient side, attention must be focused on ensuring that the needs of patients undergoing BMTs are adequately addressed in the entire realm of health care reform. This includes the entire spectrum of health care services from prevention and access to prompt diagnosis, to ensuring adequacy of the public and private insurance plans of today, as well as plans for future improved insurance coverage at state and national levels.
To address inequities in the donor pool on an international level, the World Marrow Donor Association has recently established a Genetic Diversity Working Group that is undertaking the development of a set of “common ethnic definitions” for donors and creating guidelines for targeted ethnic-specific donor recruitment worldwide. It is important to keep abreast of this work and to seek ways to offer relevant input about the broader social issues of how populations are classified.
Fact-finding tips for advocacy efforts
Accurate and up-to-date information is a core component of any advocacy endeavor. For those interested in the policy side of BMT advocacy, here are some tips for research. Anyone wanting more know more specifics about topics of operations, funding, and outcomes of our public program that HHS-HRSA Bone Marrow and Cord Blood Donation and Transplantation contracts NMDP/BeTheMatch to run, the Advisory Council for the program, and the research and statistical contract partner Center for International Blood & Marrow Transplant Research should start by sending inquiries directly to the respective entities. Clearly-worded queries and persistence will help garner best results; if you are unsure to whom to submit questions, it can be helpful to begin by contacting the organization’s media office. Assistance is available too from the offices of one’s own elected representatives in Congress. Fortunately, more tools are now available for civic research. With the passage of the Federal Funding Accountability and Transparency Act of 2006 (S. 2590), all entities or organizations which receive federal funds are required to make program information public , starting in fiscal year 2007. Data is now available in several locations, including on official government websites:
- USA Spending which details federal spending including contracts, grants, loans, and more
- ExpectMore which provides program evaluations; the latest of the NMDP is from 2004
- Government Accountability Office looks at program performance; last for NMDP is from 2002
- Center for Consumer Information & Insurance Oversight of the Centers for Medicare & Medicaid Services
- Lobbying Disclosure Database of the US Senate covering registered lobbyists and their activities
- HHS , like all federal agencies, now has its own Open Government website
and on research websites of NGOs such as :
- OpenCongress for background information on Congressional activity
Open Secrets which covers lobbying information related to legislation and public policy - FedSpending strives to make data from government sources more understandable
Contact information for federal elected officials may be found by using the zip-coded look-up tool on the websites of the Senate and the House of Representatives . Another helpful guides to both local, state, and federal contacts and governmental information is the Take Action website of the League of Women Voters.
An additional source of information on BeThe Match and its fundraising partner BeTheMatch Foundation are their yearly reports to the IRS : like all public charities holding 501(c)3 status, they file a Form 990 annually and ensure that it be made available to anyone interested. Before the Internet era, one had to make a written request to a charity for a copy of their report. Nowadays it is a simple matter to access a group’s Form 990 online on free public research websites as well as those of the charities themselves ( self-posting is considered best practice in the sector). The IRS submits the reports for posting on the Guidestar Nonprofit Directory website, run by Philanthropic Research, Inc., an organization dedicated to promoting transparency in the charity sector. The forms may also be viewed using the 990 Finder page of the Foundation Center website, which includes links to guides that explain how to make sense of the information contained in the 990s.
