Q. Who makes up the CSO?
As of September 30, 2019, the CSO represents 87% of NHF chapter organizations and 75% of HFA member orgs. Every NHF chapter and HFA member organization gets an invitation to join the CSO in the first quarter of the year. If an organization’s executive director works for a pharmaceutical or special pharmacy company, they are ineligible to become a CSO member. Any chapter and member organization can always join the CSO throughout the year. The local foundations have direct day to day contact with their local community and represent their best interests to the national organizations.
Q. Why did the CSO write this letter?
As local organizations, there have been many side conversations amongst each other about frustrations between local and national organizations. Lack of communication, support, collaboration, redundancy in the work being done, competition, and a decline in local-national partnership. This was the case at the 2019 HFA Symposium. A small group of executive directors were talking about the redundancies in the bleeding disorders community. Realizing that there were many local organizations not in this grassroots conversation at the HFA Symposium, the CSO developed a more formal opportunity for the voice of local organizations to be heard.
Q. Is the CSO comment letter for the St. Louis meeting a demand letter?
No. The CSO informed NHF and HFA that a comment letter would be sent post the St. Louis meeting. This letter is a comment letter that, while professionally strong, is not a demand. CSO’s intention was to encourage a dialogue for the health of the greater bleeding disorder community. By clearly laying out the challenges and overlap in the community, the CSO aimed to look toward the future, especially with current and predicted changes to funding and treatments in the next three years.
Q. Is the CSO letter asking HFA to dissolve?
No. Please read the letter here. There is nothing in the letter that states this or provides any specifics as to what a potential merger of the two organizations would look like.
Q. Why the 2-year timeline?
This timeline is a starting point for discussion. CSO believes this complements the change in the treatment landscape and potential funding landscape.
Q. Had the CSO members brought their concerns to the National Organizations prior to the St. Louis meeting?
Yes. In many cases, these concerns were not taken seriously or respectfully when CSO members brought them to the national organizations. This letter doesn’t end those conversations but only helps reinforce the urgency of having open dialogue with a united voice of local organizations.
Q. Are the CSO documents public?
Yes. The CSO viewed the letters as public once they were sent to the Board Chairs and CEO of the national organizations. To read the letters click here.
Q. Why are the letters addressed only to the Chair of the Boards and CEOs?
A letter addressed to the chair and CEOs is the most professional and direct way of communicating with the national organizations.
Q. Why has the Cso paused participation in research?
Research improves the quality of life for those living with bleeding disorders. Both NHF and HFA support the advancement of Biomedical research (or experimental medicine). This is research which is conducted to expand knowledge into the course of treatment of our disorders. The CSO is not questioning how they support these efforts or pausing any research with any HTC, CDC, ATHN, etc.
Over the past several years NHF & HFA have undertaken, behavioral and/or social sciences research projects. The goal of these projects generally are to help predict, prevent, and manage illness — in individuals and in whole populations. This research can also help people change their behaviors, understand treatments, and learn how to stick with them. This is the research that must be focused, organized, and meaningful. The CSO has put a pause on supporting our national organizations separate efforts to undertake behavioral research projects, allowing NHF & HFA the time to create cohesive outcomes which the community can understand and trust.
Q. What is next for the CSO?
The CSO members are resolute in our efforts to guide the bleeding disorder community in a direction that serves and benefits the overall bleeding disorder community. We look forward to hearing a response to the CSO letters and meeting during our time together in Anaheim.
Q. What was the CSO process?
The CSO has been transparent with its process from the beginning. NHF and HFA received copies of the agenda, background, and invitation letter. CSO had phone calls with both entities leading up to the meeting. This website is the platform to share updates and to remain transparent.
Q. Do the CSO members expect to receive more funding from industry with one national organization?
No. The intention of the CSO is to have one strong voice to serve the community and to fight for access to care.
Q. Has industry been updated during this process?
No. Industry has not been formally updated regarding the CSO efforts. If industry has any questions, they are welcome to contact the CSO executive committee with questions by submitting them here.
Q. Is the CSO only interested in electing the individuals that CSO members nominated to the NHF board?
No. According to the NHF/Chapter charter agreement, all NHF chapters are responsible for casting a vote to elect NHF board members. The CSO (which represents 85% of all NHF chapters) is interested in electing individuals that are qualified and interested in representing the entire national and local bleeding disorders community. Once NHF releases the list of board candidates, the CSO will review the videos and bios to endorse all qualified candidates.