On April 10, 2000, the Board of Directors voted to reverse The Hemophilia Federation of America’s long-standing policy refusing to accept donations from pharmaceutical companies involved in the manufacture of products to control hemophilia-induced bleeding. The Federation’s decision that now the time is right to accept support from the pharmaceutical industry requires both an explanation and words of caution.
During the late 1970s through the mid 1980s, much of America’s blood supply, particularly the stores of antihemophilic clotting factor, was contaminated with two deadly viruses: HIV and Hepatitis C. These viruses are devastating and continue to evoke a terrible calamity in our bleeding disorders community.
At first, both the pharmaceutical industry and certain government offices insisted that the adulteration of clotting factors was an unforeseen and unavoidable accident. Persistent questioning and investigation by our community and its supporters, including the effective efforts of the then newly formed Hemophilia Federation of America, strongly supports the position that appropriate diligence on the part of industry during those times would have substantially reduced, if not prevented, the incursion of these viruses into the medicines that otherwise promised our community a relatively normal, active and productive life.
Organizations professing to advocate on behalf of our community, along with leaders of the medical profession treating bleeding disorders, failed to aggressively and appropriately protect the health and safety of those whose care they had been entrusted. Many felt that this breach of duty resulted, in large part, because those persons and entities did not wish to challenge or provoke the industry that was their major source of funding. Much of our community believes that the failure of the pharmaceutical industry, certain government offices, advocacy groups and members of the medical profession to avert the HIV and Hepatitis C crisis resulted from complacency and disregard for the safety of our community.
As a result of these experiences, the Hemophilia Federation of America was established and takes great pride in its reputation for excellence, reliability and integrity regarding advocacy for our community without regard for any other concerns.
The Hemophilia Federation of America believes that, unlike the actions of the past, industry is now more committed to ensuring product safety. The Hemophilia Federation of America believes furthermore that mandatory government regulations, commissions and other forms of oversight have greatly reduced the chance of history repeating itself, especially since these measures recognize and include meaningful community input.
The Hemophilia Federation of America has chosen to accept industry funding without compromising the federation’s integrity, independence or its standing in our community. To those ends, the Hemophilia Federation of America has adopted the following policies, applicable to any and all donors regarding the acceptance of funds
The Hemophilia Federation of America solemnly pledges, now and forever, that it shall be mindful of history and this Preamble. The Hemophilia Federation of America shall enforce these policies strictly, diligently and without exception on behalf of all of our community who live with bleeding disorders and in memory of those of our community who have died.
The Hemophilia Federation of America shall accept funds from persons and entities in accordance with the following standards, rules and mandatory policies:
- The acceptance of funding and contributions by the Hemophilia Federation of America shall be in accordance with the Hemophilia Federation of America’s Mission Statement, Funding policies and/or its Bylaws. The Hemophilia Federation of America shall refuse any funds and contributions which violate or appear to violate the letter or spirit of the Hemophilia Federation of America’s Mission Statement, Funding Policies and/or its Bylaws.
- The Hemophilia Federation of America shall not accept any funds which extract a quid pro quo, promises or favors in exchange for funding. There shall not be any mandate, whatsoever, by funding sources regarding the Hemophilia Federation of America programs and projects. The Hemophilia Federation of America shall provide funding sources with information regarding the Hemophilia Federation of America’s allocation of funds among the Hemophilia Federation of America’s programs and projects upon request.
- No single funding source shall be allowed to contribute a total of more than 49% of the annual budget of the Hemophilia Federation of America per year.
- The Hemophilia Federation of America shall not incur any obligation based upon the expectation that funding shall be forthcoming from any source or sources. A contractual and/or legally enforceable pledge agreement for funding is exempt from the prohibitions of this section.
- There shall be no “name capture” by any funding source for any Hemophilia Federation of America event, program or project.
- An “event” is defined as a separate and distinct function of the Hemophilia Federation of America such as Symposium or any other self contained separate function sponsored by the Hemophilia Federation of America such as a sporting or entertainment event and the like.
- A “program” or “project” is defined as a part of the general work of the Hemophilia Federation of America or part of one of its events such as “Scholarships”, “Helping Hands” or the like.
- One or more funding sources will be allowed to sponsor a portion of any Hemophilia Federation of America event, program or project, such as a symposium breakout or a golf tournament hole and the like. In all cases where sponsorships are permitted, such sponsorship shall not violate or appear to violate the letter or spirit of the Hemophilia Federation of America’s Mission Statement, Funding Policies and/or its Bylaws.
6. The Hemophilia Federation of America shall refuse and/or return any funding or contribution, or the unused portion thereof, whenever the Board of Directors, for any reason whatsoever, has determined that such funding or contribution may result in any conflict or appearance of a conflict with the Hemophilia Federation of America’s Mission Statement, Funding Policies and/or its Bylaws.