August 9, 2019
Dear Mr. Bias, Mr. Andrew, Mrs. Haugstad, and Mr. Hemann:
The Chapter Staff Organization (CSO) serves as an organizing forum for the leadership of 43 state and regional non-profit organizations dedicated to serving the bleeding disorders community. All non-profit organizations that are chapters of the National Hemophilia Foundation (NHF) and/or member organizations of the Hemophilia Federation of America (HFA) are invited to join the CSO. On August 5th and 6th, the CSO convened 35 people representing 32 independent non-profit bleeding disorders organizations* in St. Louis to discuss the future of the bleeding disorders community.
At this meeting, we reflected on our shared history and the important work of both NHF and HFA in serving those affected by bleeding disorders. Through advocacy, education, research, and a myriad of programs, the national organizations (both NHF and HFA) have worked hard to improve the lives of people living with, and impacted by, bleeding disorders. Thank you for your commitment to the cause and our community.
Our discussions were robust and touched upon many of the key challenges facing our members. After much discussion and debate the CSO voted on a series of key statements about chapter leadership, national leadership, and changes that we believe will best serve the bleeding disorders community in the years ahead. As both NHF and HFA are in the process of identifying new leadership and charting a new path forward, we respectfully request that you consider these statements and work with us to achieve our common goal of a stronger bleeding disorders community.
Trust
The idea of trust among CSO members provided a backdrop for our meeting. Many local organizations have felt in the past that their voices have not been heard by our national organizations; certainly, we bear some responsibility for that dynamic. We do not believe that this is deliberate on the part of the national organizations, but rather the cumulative effect of activities and interactions over many years. For example, it has been difficult to get access to, or an understanding of, the full financial picture of the national organizations. It is our sincere hope that this letter, written in the spirit of optimism for our collective future, is a step in a positive direction.
Local Chapters’ Oversight Responsibilities for the National Organizations
We believe that a strong national voice is critical to moving the community forward. The chapters are obligated to provide oversight for the national organizations on behalf of the broader bleeding disorders community. As such, members of CSO have committed to holding NHF and HFA accountable for leadership in the following ways:
1. Actively engaging in the national organizations’ Board Member and National Chief Executive Officer review and selection processes, including putting forth candidates for those roles;
2. Collaborating with the national organizations and national executive leadership as peers, with separate but complementary missions;
3. Speaking with a unified voice, and through an identified spokesperson when needed, to advance a leadership agenda for the bleeding disorders community;
4. Developing and documenting the roles and responsibilities of national and local bleeding disorders organizations and holding each other mutually accountable; and
5. Tracking progress against prior commitments by both the national organizations and local chapters and ensuring appropriate follow-up/resolution.
To this end, we would like for both NHF and HFA to identify one voting seat on each of their respective Boards to be occupied by a CSO representative. We believe this presence will further strengthen organizational alignment and mutual accountabilities.
Governance of National Organizations
As we considered the current state of the bleeding disorders community, we looked at specific areas that NHF and HFA serve. Through our analysis and dialogue, it has become clear that the programs and services offered by the national organizations overlap substantially. As industry funding decreases, therapeutic innovations accelerate, and the needs of our community change, we believe that a merger of NHF and HFA will be the most beneficial path forward. We have tremendous respect for the value that both organizations bring and understand the need to merge in a way that is collaborative and respectful.
We believe that a merger will ensure one strong voice for the bleeding disorders community at the national level while simultaneously reducing inefficiencies in the services, programs, and fundraising efforts delivered. In order to preserve and protect the best of what both NHF and HFA offer, the CSO believes that now is the time to begin the careful, intentional, and strategic planning process towards a unified national entity.
With that in mind, the CSO recommends that the staff and board leadership of NHF and HFA convene and discuss how they might best undertake a merger to be completed within the next two years. Our hope is that this discussion also includes how to handle the upcoming CEO vacancies at NHF and HFA given a potentially merged future, with an eye towards selecting interim leaders for the organizations while a possible merger is evaluated (as opposed to hiring two new, full-time CEOs). Leaders being brought into the organizations should be made aware of the desire for a merger. We respectfully request an update on merger analysis progress at the upcoming NHF national meeting in October during the chapter track, with a statement to the CSO organization about this progress shortly thereafter.
In addition to these overarching topics, we discussed progress and opportunities across five areas of equal importance: Advocacy, Chapter Support, Fundraising, Programming, and Research.
Advocacy
Effective advocacy is a hallmark of successful non-profit and mission-based organizations. National leadership has made good strides in this regard, and we see potential areas of future growth to further our cause:
1. Unified voice at the federal level: In the current environment, the bleeding disorders message on Capitol Hill is diluted across NHF, HFA, and other national and regional bleeding disorders organizations. By collaborating and creating a singular voice on bleeding disorders issues in DC, we will be in a better position to create momentum and change. We also avoid the issue of debating “who speaks for the community” and the confusion this may create for legislators.
2. Fund local chapter advocacy: Historically the chapters have applied for funding to support specific advocacy efforts. However, effective advocacy is the responsibility (and expectation) of all chapters. Rather than go through an annual proposal and application process, an annual grant to each recognized chapter to undertake advocacy will benefit the entire community. It will accelerate our legislative agenda and enable grassroots efforts at the local level that reinforce national lobbying activities.
3. Consider hiring state-level lobbyists: We face substantial policy challenges. The recent debate over accumulator adjusters was an excellent example of the many legislative fights ahead. National leadership should consider providing funding for lobbying support within each state. Those state-level grants would be utilized by chapters to engage lobbyists in the state capitols to further our mission.
CSO leadership strongly suggests that national leadership hosts a combined Washington Days in 2020.
Chapter Support
The national organizations play a critically important role in supporting, guiding, and promoting global bleeding disorder efforts. Member organizations play an equally valuable role through their direct connection to individuals in the community. To further strengthen the member organizations alongside national leadership, there are opportunities to improve the support that chapters receive.
1. Focus event activity: In some ways, the bleeding disorders community suffers from an embarrassment of riches – too many events of similar type touching the community. Through tighter connection with the local CSO members, the national organizations may deliver programming that is more timely, relevant, and valuable to chapters.
2. Promote shared resources: The need for shared resources takes many forms. For example, chapters may want to hire shared staff that support multiple chapters; how can national organizations provide guidance for best practices in taking this on? Many chapters need to implement shared policies and procedures; what initiatives at the national level would facilitate this information sharing? National leadership is uniquely positioned to catalyze resource sharing across local chapters that are often under-staffed and would benefit immensely from this cache of knowledge and collateral.
3. Streamline the chapter support model: Depending on the issue at hand, CSO members must discern who to call at the national level. Frequently this results in many phone calls and emails to determine the best point of contact before beginning to tackle an issue. By assigning one point of contact for any given chapter, it would make the national organizations immanently more accessible by local chapters who are eager to tap into their expertise.
Fundraising
Development is the life blood of non-profit organizations. Yet, our collective experience has been a more reserved approach to fundraising. We see immense opportunity in the coming years.
1. Diversify funding sources: Best practice organizations raise money from many sources. Unfortunately, the bleeding disorders community relies heavily on industry. NHF, HFA, and the vast majority of local member organizations receive over half of their funding from industry. In many cases, substantially more than half. As industry reduces its giving to the bleeding disorders community, we have an imperative to draw funds from new and different sources. We believe that the leadership of the national organizations should increase non-industry funding to account for at least 25% of total revenue within the next three years.
2. Create a cohesive story: The bleeding disorders community struggles with its story. Is it the story of pre-factor immobility and death for patients? Is it the story of the HIV crisis? Is it the story of improved treatment through prophylaxis? Is it the story of innovation and optimism in an era of gene therapy and beyond? The reality is that our history is rich, complicated, tragic, and hopeful. However, in trying to honor each of those elements we fail to tell a cohesive narrative that resonates with major donors. We need to identify our “why” and tell it with an eye towards our development goals.
3. Build a healthy organization: Among rare diseases, bleeding disorders (especially hemophilia) have an enviable position as being better recognized and funded. While NHF and HFA have combined annual funding below $30M, we aspire to a future where a unified national bleeding disorders organization captures greater share of charitable healthcare giving.
Programming
Programming is a strength of the bleeding disorders community. Nonetheless, we see areas to further strengthen this domain.
Eliminate duplication: NHF and HFA offer many overlapping programs. Similarly, industry offers programs that are sometimes replicated by the national organizations. It would benefit the community to rationalize these programs and put the surplus dollars towards other community needs.
Expand partnerships: Whether partnering with organizations like NORD, or providing stipends to hire local speakers, national leadership should seek more partnerships in creating and delivering program content.
Tighten logistics: Chapters noted that often they are not given enough advance notice about national programs, and that dates will conflict with other local events. A simple but valuable immediate action would be more advance planning and communication to help garner better attendance at nationally-sponsored programs. Research
Research
Research is at the heart of finding an ultimate cure for the many bleeding disorders served by local chapters and national leadership. We are excited by several critical opportunities to improve how the national organizations engage in research today:
1. Serve as the organizing body, not as a primary investigator: National leadership is not well positioned to conduct primary research on par with leading research organizations. However, they are exceptionally well-positioned to set the research agenda, advocate for underserved populations, and otherwise drive research. We would like to see national leadership donating money and ideas to stimulate research by the government, academia, and other respected research institutions. By orchestrating research, instead of conducting it, the national organizations will best serve the community.
2. Drive collaboration among diverse research entities: Many organizations are involved in bleeding disorders research today, including ATHN, universities, NIH, and many others. National leadership may help to facilitate communication across these groups, as well as connecting resources to make this research more synergistic and collaborative.
3. Distill research for the community’s consumption: At a time of unprecedented advancements, the community has an imperative to stay abreast of research. National leadership may assist this effort by synthesizing and explaining much of what’s happening today in accessible language that is readily available to the community.
Upon reflection, CSO leaders agreed that they will pause participation in research efforts, such as MyBDC and CHOICE, until national leadership determines a collaborative approach to research and provides more transparency on patient-collected data and research.
Moving Forward
We are optimistic about the future of our community. We are proud of our heritage and excited by the opportunity to elevate bleeding disorders’ profile and financial position to improve the lives of affected individuals and discover new therapies.
Merging NHF and HFA is a natural step on that journey. We look forward to working with the community, national leadership, and other stakeholders on the above areas, and to enacting innovation that will unleash the full potential of the bleeding disorders community.
Sincerely yours,
Rich Pezzillo, CSO Chair
Charlene Cowell, CSO Vice Chair
Debbi Adamkin, CSO Secretary
Fran Haynes, CSO Treasurer
Sue Martin, CSO Advisor
Note: See a full list of the CSO members who voted in favor of this letter here.
* Bleeding Disorder Foundation of Washington, Bleeding Disorders Alliance Illinois, Bleeding Disorders Association of Northeastern New York, Central California Hemophilia Foundation, Connecticut Hemophilia Society, Eastern PA Hemophilia Foundation, Florida Hemophilia Association, Gateway Hemophilia Association, Great Lakes Hemophilia Foundation, HCWNY Foundation/ Western New York BloodCare, Hemophilia Alliance of Maine, Inc., Hemophilia Association of NJ, Hemophilia Foundation of Michigan , Hemophilia Foundation of Minnesota/Dakotas, Hemophilia Foundation of Southern California, Hemophilia Foundation of Greater Florida, Hemophilia of Georgia, Hemophilia of Indiana, Hemophilia of North Carolina, Hemophilia of South Carolina, Kentucky Hemophilia Foundation, Lone Star Chapter of NHF, Midwest Hemophilia Association, New England Hemophilia Association, New York City Hemophilia Chapter , Oklahoma Hemophilia Foundation, Oregon Hemophilia Foundation, Rocky Mountain Hemophilia & Bleeding Disorders Association, Southwestern Ohio Hemophilia Foundation , Texas Central Hemophilia Association, Tri-State Bleeding Disorder Foundation, Virginia Hemophilia Foundation.