by Marilyn
Ness -- New York, NY
Director/Producer "BAD BLOOD"
I have been
working on BAD BLOOD
on and off for the past ten years and had the opportunity to meet many people
from the community.
Of course, like so many others, when I started the
film I believed only men were affected by hemophilia and the women affected were
comprised of the mothers, wives, and sisters of these men. Now I know
better! Having met so many women affected by Von Willebrand disease or even
severe hemophilia, I realize the issue of blood safety affects each and every
one of us.
As a woman filmmaker (who hired women to fill virtually every
post on the filmmaking team!) I am gratified to help spread a more educated
message about the impact of bleeding disorders on women!
And for those of you who like a bit of history you'd be interested to know that
there was an article published in The Saturday Evening Post in November, 1953 called "I've
Got The Lonesomest Disease". It was written by a woman named Helen Furnas
who KNEW she had a bleeding disorder but could never convince the doctors.
She writes about the challenges of hemophilia for both men and
women — dating back to
1953!!!
Congratulations on your education efforts! March on! Get active! Stay safe!
==>Marilyn invites you to become a BAD BLOOD fan on Facebook to get updates on the film.
==>To see Marilyn's work, please click the link below.
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.
Movie Synopsis
Hemophilia is a rare genetic blood clotting disorder, most often
passed from mother to son, resulting in severe crippling and often
death. But in the 1960s, Factor concentrates, a revolutionary new
treatment derived from human blood, was processed, bottled, and offered
for sale by drug companies, to be injected by the patients themselves at
home. The medicine transformed hemophilia from a fatal disease to a
chronic condition and the patients were now able to lead nearly normal
lives. This "miracle" product was considered so beneficial that it was
approved by the FDA despite known risks of viral contamination,
including the near-certainty of infection with hepatitis — and despite
the fact that the process by which it was made, the pooling of blood
from thousands of donors, was otherwise outlawed. Because of its
manufacturing process, each dose of Factor concentrate was made by
pooling 60,000 individual blood donations, opening these vulnerable
patients to an enormous contamination risk. At the time, pharmaceutical
companies, government regulators, and even doctors considered hepatitis
an "acceptable risk" for these patients. The patients themselves were
rarely warned.
In the early 1980s, a deadly, unknown virus began to affect gay,
urban men — and quickly spread to the hemophilia community, raising
concern that the virus was in the nation's blood supply. Yet even as HIV
was identified, hemophiliacs dependent on multiple doses of Factor
concentrate were advised by their doctors and advocacy group to keep
using them. By the time the medication was pulled from the market in
1985, 10,000 hemophiliacs had been infected with HIV, and 15,000 with
hepatitis C; causing the worst medical disaster in U.S. history.
In the aftermath, dire questions remained. How could this have
happened? What would prevent something like this from happening again —
both for hemophilia medications or for any FDA-approved medication?
As the hemophilia community realized the extent to which the
government had been lax in overseeing pharmaceutical companies, and the
extent to which the safety of patients figured last in the equation of
costs, benefits, and profits, they began to fight back. Patients and
families demanded more stringent regulation of industry by the
government and spurred government reform over the safety of the U.S.
blood supply. Today this small community stands as the guardians of the
nation's blood supply.
BAD BLOOD, a feature-length documentary film, recounts this
cautionary tale from the perspective of six families affected by this
tragedy and the doctors, nurses, and scientists who cared for them.
Challenging viewers to their own vigilance, BAD BLOOD humanizes this
under-reported medical disaster, stimulating further and much-needed
public debate about the government's role and effectiveness in
regulating the pharmaceutical industry today.
This Synopsis is found on the website, as well as other fascinating information.
*
* *
Most thoughtful writing of a project that
promises to bring international awareness of the importance of a safe blood supply
Marilyn is a documentary producer who uses this medium to educate the
public about the impact that bleeding disorders have on any person with a
bleeding disorder. The film, which goes to the heart, addresses the important
issue of ensuring a safe blood supply. The documentary, "Bad
Blood," illuminates past practices that allowed people with hemophilia to
unsuspectingly use blood products contaminated with HIV and Hepatitis.
