Honoring Virginia Voices: A Look Back at National Advocacy
As part of our 50th Anniversary year, we’re looking back at powerful stories that reflect the strength and resilience of our community. This month, we’re reflecting on the leaders and movements that shaped the bleeding disorders community. In this February 1993 article from Hemophilia News Notes, the Men’s Advocacy Network of the NHF (MANN) is recognized for its bold, grassroots platform that helped steer the direction of the 1992 NHF Annual Meeting. We’re especially proud to note that two Virginia advocates—Don Smith, current VHF Board Treasurer, and Dana Kuhn, longtime community leader—were part of this historic moment. They are pictured among national peers in the article’s photo caption, representing Virginia’s long-standing commitment to patient advocacy.
“MANN Platform Points NHF in New Direction”
by Don Colburn, Springfield, Mass., MANN Chair
and Rich Davis, Lacey, Wash., MANN Vice-Chair
MANN Committee at 1992 NHF Annual Meeting: (from left) Bob Baldwin, Don Smith, Michael Hylton, Charles Gorton, Dana Kuhn, Val Bias, Rich Davis, Richard Johnson, Art Zerbe, John Williams, Don Colburn, Glenn Pierce, Jonathan Botelho, Shahik Gregorian. Go here to see pdf of article with photo.
The contribution of Men’s Advocacy Network of the NHF (MANN) to the 1992 Annual Meeting, and to the future direction of NHF, was strong and positive. The MANN Executive Committee (MEC) and the MANN Regional Coordinators (MRC) came to the meeting with a ten-point platform, on which we expected action by the close of the Board meeting on November 22, and the heart of all ten points was adopted. We see this as recognition of MANN’s two-year effort of outreach. The renewed commitmentfrom NHF to people with hemophilia and HIV was a momentous demonstration of consumer empowerment.
The MANN platform consisted of issues that came from the MANN chapter/HTC coordinators (MCC) and local MANN members demonstrating the grassroots effectiveness of MANN. They said, in effect, ”this is what we think you should be doing.” The MANN Executive Committee (MEC) put these issues in the form of a political platform during a weekend retreat in October. Two weeks later, the platform was endorsed by the MANN Regional Coordinators (MRC) during a telephone conference. We then asked the MEC and MRC to contact MANN chapter/ HTC coordinators (MCC) and ask them to let NHF know their response, either in advance or at the Annual Meeting. The response was tremendous: chapters from New York and New England to Texas and California wrote to NHF with endorsements, setting the tone for the meeting.
At the meeting, outside groups also sought to advance their views, heightening awareness and sensitivity to the issues raised in the MANN platform. On Thursday, November 19, when the MANN Committee met, the room was full and the atmosphere was electric. Then-President David Walters presented the NHF Executive Committee’s reaction to the ten points; while they were substantially in agreement with the platform, there was agreement that further comittment to these issues should be pursued. Then it became a matter of campaigning to push forward on the remaining points. There was a cohesive movement on the part of MANN, in concert with Women’s Outreach Network of NHF (WONN) members, to say. “Yes, these are important to us.”
This positive movement was demonstrated when the corporation members met on Saturday and elected a new and diverse group of directors-at-large. The NHF Annual Meeting culminated at the Board of Directors’ meeting with Glenn Pierce as its president and Val Bias as its chair. It is gratifying to see that the new president and chair have a good working relationship, that they are full partners. An organization of this size will benefit from the dual comittment of these leaders.
We are excited about the potential for accomplishment in the coming year. We have a pretty big slate in front of us, consisting both of national priorities that have been selected by the MANN Committee, and local priorities (see list below). We are impressed by the mechanisms for accountability that are being set in place. Ours are constituency priorities. MANN and WONN have organized input at every level of NHF. We feel that, since the inception of these two peer/consumer committees, NHF has benefited by increased consumer participation.
MANN Program National Priorities For 1992-1993
The MANN National Priorities were established for the 1992-1993 year. They are:
MANN Program Priorities (Local)
l. Encourage MANN members and coordinators to become members of their chapter and national boards and work with their chapters and hemophilia treatment centers to understand and promote the MANN program.
2. Hold two “Men Working Together” meetings over the next year with new participants and increase local.participants in the MANN program.
3. Promote collaboration between MANN and WONN, CODP programs and with other hemophilia and HIV/AIDS service organizations.
4. Develop an HTC consumer evaluation process.
MANN Committee Priorities (National)
I. Encourage NHF to continue exploring issues of compensation and healthcare reform.
2. Promote a congressional investigation into the infection with HIV of people with hemophilia through the blood supply.
3. Improve HTC healthcare for HIV.
