BAD BLOOD: A Cautionary Tale

Website

http://www.necessaryfilms.com/badblood.html

Topics

Health: Disease/treatment, HIV/AIDS
Human Development: Children, Youth
Human Rights: Civil Rights, Disability, Social Exclusion
Information & Media: Science
Politics: Activism, Civil Society, Codes of Conduct, Corruption & Transparency, Ethics & Value Systems, Governance, Justice and Crime

Project Geography

US: National

Identity Niches

Disability Culture

Budget

Raised to date: $ 260,000.00
Estimate to complete: $ 240,000.00
Total Estimated Budget: $ 500,000.00
The budget numbers above are accurate as of 08/12/2009

Status

Post Production

Media Type

Video

Project End Use

TV

Key Personnel

Marilyn Ness
Producer / Director
Marilyn Ness is a two-time Emmy Award winning documentary film producer with over thirteen years of experience. Ness opened her own production company, Necessary Films, in 2005 completing four short commissioned works: Setting the Stage (for Kaufman Center, a NYC arts organization), Stop the Abuse of Power (for the ACLU), Changing Lives, One Story at a Time (for Youth Communication, a publisher of teen magazines), and The Holleys: An American History (for the Salisbury, CT Association). Ness served as executive producer on the 2006 documentary Lonely Man of Faith. Before opening her own production company, Ness produced films for acclaimed director Ric Burns. Their collaborations included biographies on playwright Eugene O'Neill and artist Andy Warhol both of which were televised on PBS in 2006. Andy Warhol was awarded the prestigious Peabody Award in 2007. Marilyn first teamed up with Burns to produce a biography on artist Ansel Adams which won an Emmy for Outstanding Artistic & Cultural Programming, the prestigious Columbia DuPont Award, and was nominated for two additional Emmy's including Best Documentary. Their second collaboration entitled The Center of the World on the rise and fall of the World Trade Center won an Emmy for Outstanding Historical Program and a nomination for Best Documentary. Before joining Burns, Ness co-produced two programs for The Learning Channel, associate produced Meltdown at Three Mile Island for the award winning historical documentary series American Experience on PBS. Marilyn has taught the Producers’ Documentary Workshop at New York Film Academy.

Outreach/Engagement Plan(s)

The goals of our engagement and outreach campaign for BAD BLOOD will vary significantly by the communities utilizing the film. We have identified four key interest groups around which we will focus our outreach initiatives.

Bleeding Disorders Community:
Following this tragedy, the bleeding disorders community organized and lobbied the FDA to safeguard the blood supply and to improve the regulation of their medication. It is now widely believed that their medication is far safer than most others on the market. Therefore, the outreach message we are developing with the four main hemophilia advocacy groups including The National Hemophilia Foundation, World Federation for Hemophilia, the Hemophilia Federation of America, and The Factor Foundation will differ significantly from that for the general public.

For the bleeding disorders community the encapsulation of their tragic history in a 70-minute film gives them a tool to educate families just born into bleeding disorders about their history and the need for self advocacy; it allows them to reach beyond their constituency to educate outsiders about hemophilia and the need to continue to protect the blood supply; and it allows them to approach legislators about the need for reform of health care policy continuing to affect the chronically ill (especially those dealing with hemophilia, HIV, and hepatitis) including eliminating lifetime insurance caps, unrestricted access to specialized care and treatments, and other needs specific to the chronically ill. To that end, the National Hemophilia Foundation has already begun organizing its more than 50 chapters to use the film in education and advocacy – in fact, they have already distributed the 12-minute fundraising trailer so chapters can begin to plan outreach and education events around the film. In particular, NHF hosts annual Advocacy Days encouraging its members to travel to Washington to speak with legislators about the issues facing the bleeding disorders community. We plan to show BAD BLOOD in advance of Advocacy Days to inspire new members to become active advocates. We are in discussions about having them create a teaching guide to facilitate the use of the film within their community. The World Federation of Hemophilia is considering a comparable initiative with its 114 international chapters. (Letters of support available from those organizations.)

HIV/AIDS Community:
We are currently looking for a partner within the HIV/AIDS community to organize outreach initiatives utilizing the film. For this community, the historical lessons from this tragedy still hold true today: AIDS is a 100% preventable disease. When, they ask, is there enough information to act? The question emerges in BAD BLOOD as public health officials continued to gather statistics in the earliest days of AIDS rather than take definitive action even as Bruce Evatt of the CDC begged for policy changes. Today, HIV/AIDS prevention groups finds themselves asking the same question: When is there enough information to act? As they face opposition to effective prevention strategies such as syringe exchange and condom distribution programs. One of the concepts we are discussing is the creation of an outreach program called “Repeating History” featuring an excerpts from the film to use when speaking with public health officials, policy advisors, and legislators as they consider various HIV prevention campaigns.

General Public/Consumer Advocacy:
Though the BAD BLOOD story unfolded between the 1940s and the 1990s, its continued relevance is unavoidable when you consider 94% of seniors and 62% of non-elderly adults rely on a prescription medicine on a regular basis. (Children were not even surveyed.) In fact, spending for prescription drugs in the United States topped $200 billion in 2005. For the public at large BAD BLOOD focuses a spotlight on the pharmaceutical industry and asks audiences to really scrutinize the effectiveness of the Food and Drug Administration in checking that industry.

Aside from a general call for an FDA overhaul as the new administration considers how to allocate our national resources, there are a number of areas consumer advocates believe need repair within the FDA that are addressed specifically within BAD BLOOD: a restructuring of the agency to eliminate conflicts of interest between advisors and regulators; increased funding for post-market surveillance of drugs so adverse reaction patterns can be identified early and protective action taken quickly; maintaining consumer advocates on FDA advisory boards, not just industry advisors and scientists. At the very least, consumers will become more vigilant about their own medications asking necessary, skeptical questions about the drug approval process in the U.S.

While are currently seeking an outreach relationship among consumer advocacy groups who have a well-established methodology to get consumers to lobby their representatives in advance of significant policy debate and reform. A national broadcast of BAD BLOOD will kick off a national campaign for FDA reform with targeted initiatives when specific legislation is up for review. The BAD BLOOD website will also drive interested viewers to our outreach partners’ sites so that broadcast interest can be harnessed into audience activism.

Educational:
PBS Home Video caters to educational markets in addition to general audiences. We plan to develop teaching guides, posted on our website, enabling BAD BLOOD to be used as a teaching tool in high school and college level history classes and civics classes. We will have a World AIDS Day initiative encouraging schools to do lessons on the historical emergence of AIDS and the public health and general population response to AIDS. Discussions will include government responsibility, discrimination, and activism. At the very least, it would be worthwhile to remind today’s youth that AIDS began at home and remains, unfortunately, a real and growing problem even for the United States.

One of the film’s advisors, Susan Resnik, has been teaching doctor/patient communication at the University of California San Diego for the last ten years. She plans to write a teaching guide to accompany the use of BAD BLOOD in doctor/patient communication courses in medical schools nationwide. Though she has taught this story for years, she firmly believes the personal and humanizing stories shared in BAD BLOOD will drive home the importance for doctors to make patients equal partners in care. This can also be an area of overlap for the bleeding disorders community.

We will also work to get business schools and marketing programs to incorporate BAD BLOOD into ethics of business classes since many of the decisions that resulted in the infection of so many were generated in boardrooms with the bottom line in mind.

Regardless of the community, BAD BLOOD offers a lens through which to examine many issues that require discussion or redress today. By collaborating with outreach partners in each of our four areas of focus we can harness this cautionary tale and put in very real and human terms the consequences of our inaction.

Funders

Location(s)

167 E. 67th Street
Suite 10EF
New York, NY, 10065
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