During the past 18 months, the National Hemophilia Foundation (NHF) has put finishing touches on its plan to connect chapters across the country. The New Chapter Services Department combines the former education and public policy departments in a more targeted effort to strengthen and sustain chapters. In this article, you will meet some of the key NHF staff customizing services to the bleeding disorders community through its new, improved network of chapters.
The Timing Is Now
Currently, NHF’s chapters come in many shapes and sizes, from volunteer-run organizations to those fully staffed. While variety can be a good thing, families and individuals with bleeding disorders need the assurance that all chapters will provide predictable services. To standardize services, programs and even staffing from coast to coast, NHF, with the input of its chapters, created chapter standards as the cornerstone of the new Chapter Charter Agreements between NHF and local organizations.
“The NHF Board determined that a stronger chapter network would help the organization achieve its goals,” says Val Bias, NHF CEO. “In the future, there will be like and similar services for individuals with bleeding disorders state to state.” Those services will include programs implemented through NHF’s cooperative agreement with the Centers for Disease Control and Prevention (CDC), such as a women’s initiative to educate and raise awareness about the symptoms of bleeding disorders, says Bias.
NHF now has 45 chapters that have signed Charter Agreements; among the new affiliation options was the opportunity to merge with NHF. “Of the five chapters that are merging with NHF, three had no staff,” says Joe Kleiber, Vice President for Chapter Services. “They have not been operating as the small businesses they really need to be in supporting our community at the local level.”
NHF’s Campaign for Our Future is providing the financial support for increased services to chapters. Chapter standards are being rolled into the ACT initiative—Access to Care Today, Achieve a Cure Tomorrow—in five areas: government awareness and support; education for all life stages; access to care at hemophilia treatment centers (HTCs) and beyond; research and training; and strong local organizations. Staffing assistance grants have been awarded to chapters to help them meet chapter standards, and future grants also will be tied to the ACT initiative, says Kleiber.
NHF’s first three Regional Directors in the field—Michelle Rice in Indiana, Kathleen Roach in Wisconsin, and Dawn Rotellini in Pennsylvania (all former chapter executive directors)—will provide chapters with the hands-on help they need to meet the chapter standards. “They allow us to provide more direct human resources to our chapters,” says Bias.
Human Resources, Direct Services
“A lot of my work is rolling up my sleeves and sitting down to work with chapters on some of the most basic things, like phone coverage or Web site creation,” says Rotellini. She also helps chapters form committees, and plan special events and educational programming.
When the Central Ohio Chapter of NHF in Columbus took steps to merge, it had co-volunteer presidents and a volunteer board. With NHF’s guidance, the board determined what it needed and hired its first full-time paid executive director (ED) and part-time fundraiser. “We now have one and a half staff people in a chapter that didn’t even have an office nine months ago,” Rotellini says. The chapter has held its first fundraising gala and created a Web site. “They’re getting information out to the community and ratcheting up their education initiatives,” says Kleiber.
The Central Ohio chapter also was chosen for a CSL Behring Foundation grant to create awareness for von Willebrand disease through messages displayed on gym boards in girls’ locker rooms. “It is a great way for the chapter to reach out to the local community and start becoming known in the community,” says Rotellini. The goal is to educate school nurses, who will refer the girls for further testing if they have symptoms.
“My areas of expertise in helping the chapters are infrastructure, board development, strategic planning and building a volunteer base,” says Kathleen Roach. She will be working with Jennifer Crawford, NHF Director of Education, and other staff to help chapters implement programs that are part of NHF’s cooperative agreement with the CDC.
“I envision the department providing strong education programs for chapters and HTCs to implement,” says Crawford. One is the new “Steps for Living” curriculum, which will provide information on managing bleeding disorders at all life stages. Input for the materials and resources will come directly from the community.
“We’ll put as many chapter people, consumers and HTC staff as we can on the task force to help us build the program,” she says. “That’s how we operate—all of what we do comes from the community through us. We take the information, modify it to make it applicable to all and then disseminate it.” NHF will provide training on how best to use the materials and resources, which will be available online.
A needs assessment survey, sent to chapters in July, will reveal what chapters want and how they want it. “We are assessing the best way to offer training. Is it through regional trainings, webinars or bringing in an expert?” Roach wonders. “A key component of our jobs as regional directors is finding the resources to make chapters successful.”
Strengthening Statewide Advocacy Efforts
During the last decade, advocacy for the needs of people with bleeding disorders has moved from the federal government to the state, says Bias. To bring the pressing issues of this community before state lawmakers, chapters will have to step in and step up their efforts. “Chapters will need to be more effective in delivering these messages state by state,” says Bias.
To improve the effectiveness of their state advocacy efforts, chapters can rely on the experience and expertise of NHF Regional Director Michelle Rice and Ruthlyn Noel, Manager of Public Policy. Rice’s two teenage sons have hemophilia, and she empathizes with the community. “We’ve gone through a lot of the same insurance issues as other families—capping out on insurance, having a child in a high-risk pool and having the other on the state Medicaid program. I’ve dealt with all the red tape that goes along with those,” Rice says. “I want NHF to help educate chapters so they can ensure their consumers have access to adequate, affordable coverage.”
Together, Noel and Rice helped guide the half dozen chapters and associations in New York through the process of planning and implementing a state advocacy day in April. “When it comes to advocacy, speaking with one voice is key,” Noel says.
The legwork paid off—more than 50 people turned out for the first New York state advocacy day. The meetings with legislators in Albany are already bearing fruit. “A number of lawmakers have agreed to support legislation in both the state senate and assembly banning Tier 4 drug pricing in New York,” Noel says. Feedback from many of the participants was positive, says Noel. “They said, ‘I can’t believe we haven’t done this before. I am there next year. Just call me.’ ” As a result, NHF now has trained advocates in New York. “The New York State Hemophilia Advocacy Coalition is now an active group we can call to help generate support among patients on issues that affect the entire community,” Noel says.
One of the issues chapters face are statewide changes to Medicaid. “We are trying to be as proactive as possible, letting chapters know if we see a problem with their state Medicaid program,” says Rice. She and Noel are available to conduct chapter training and provide guidance on talking points with Medicaid officials or at legislative hearings.
Not all chapters have the same needs. “We have to tailor our advocacy to the individual states and to the individual chapters that we’re working with,” Noel states. For instance, chapters in some states are pushing for the creation of a statewide bleeding disorders advisory board, composed of healthcare professionals and people with bleeding disorders who will make recommendations on important issues to the state’s health commissioner and insurance director. “The board brings all the key players to the table to ensure our concerns are adequately addressed,” Noel says. So far, legislation establishing boards has passed in Illinois, Iowa, Texas and Ohio, and is pending in Massachusetts.
“Standards of care” legislation is another consideration for chapters. To date, only one state—New Jersey—has passed it. Still, NHF’s public policy staff works with interested chapters. “In the last year we’ve supported efforts underway in Pennsylvania, Missouri and Alabama,” says Noel. “We’re also increasing efforts to get the insurers to back the standards.”
Focus on Fundraising
With contributions to nonprofits declining, chapters have to be creative when it comes to fundraising. NHF’s Development Department can help drum up ideas for increasing the cash flow. The new chapter standards hold chapters accountable for hosting two local fundraisers and one cooperative fundraising activity with NHF yearly.
So far, the Hemophilia Walk program has drawn 10 chapters from across the country. Chapters lacking the resources to host a walk have other options. “We’re identifying restaurant chains that would allow chapters to get a percentage of their profits for one day during Hemophilia Awareness Month in March,” says Mary Ann Ludwig, NHF’s Vice President for Development.
Although many chapters struggle with individual giving, the key is relationship building, says Ludwig. “We do a lot of training on ‘making the connection,’ so that once they have donors they learn what to do to keep them.” The mantra in development is: ‘It’s never no, it’s not now,’ Ludwig adds.
Making the most of fundraising events is another goal of NHF’s development department. “These are not just feel-good events—they should raise money and raise awareness,” Ludwig says. “We want to help them go from being a small kitchen table organization to a larger fundraiser.”
Chapters now have the benefit of a grant writer at NHF. Five chapters with similar infrastructure needs were identified as potential candidates for the CSL Behring Foundation Patient Grants, providing funding for innovative programs to hemophilia foundations, chapters and associations. The grant writer created a template for chapters to use in their applications. “We look for these and other opportunities to work collaboratively with our chapters,” Ludwig says.
“When our chapters work with us, both the local and national organization benefit from fundraising efforts,” Bias says. “They want us to achieve that cure, we want to achieve that cure—the best way to get there is together.”
Hemophilia of North Carolina (HNC), the only chapter in the state, has been transformed. As the recipient of one of NHF’s initial staffing assistance grants, it expanded its ED position from part-time to full-time and improved its ability to reach its community. “It’s allowed more time to interact with volunteers and increase our volunteer base. This is significant because quite a few of them are involved in writing grants, running programs for us, getting involved on committees and helping us with our second annual Walk,” says Sue Cowell, ED.
HNC’s success can be measured by the number of programs it held in the first half of 2009—19—more than double the number in 2008. The programs serve a cross section of the community through a women’s retreat, a Blood Brotherhood program for men, an adult retreat and a legislative day. The Latin Union, a group for Hispanic members, meets monthly.
For chapters that haven’t come on board with NHF, Cowell offers some advice. “Take another look. The resources are different from even a year ago. The Chapter Services Department helps you create a long-term plan to fulfill the chapter standards. They are very flexible.”
Chapters have one overarching purpose—to serve their community’s needs. “Stronger chapters on the ground mean a stronger patient network, and that means better services for all people living with chronic bleeding disorders,” says Bias.