Amyotrophic Lateral Sclerosis is a rare neuromuscular
disease hereditary in my family. While there is currently no cure or treatment,
the pathology of the disease was recently revealed creating great optimism.
Unfortunately, the insidious politics of the research community can stymie new
treatments. “In the world of medical research, patients are at the bottom of
the food chain” is a quote from an article I read about the scientist Stephen
Friend. Friend, who worked for eight years in academia, eight years in biotech
and eight in Big Pharma, is quoted saying, “If
patients knew the secrecy in academia, they would throw up.” After several years of gathering similar articles, I decided to create something that would illustrate the problems with medical research for the benefit of myself and others. I had no idea how big it would get when I started; it ended up being 10 feet high and 4 feet in circumference.
Patients Are at the Bottom of the Food Chain, Nancy Worden 2016
Academic secrecy is not the only source of corrosion in the
food chain. Congress can prohibit the collection of stem cells and the FDA can
stall approval of a treatment. The
ALS food chain is a complex web of prey and predators all mixed up, feeding on
and dependent upon each other. What the FDA, academia, politicians and drug
companies all have in common are that they are comprised of humans. Whenever
humans are present, egos, turf wars, competition, greed and secrecy are too.
Top section of Patients Are at the Bottom of the Food Chain
The symbolism in my food chain has many layers. The archaeologist, Marija Gimbutas, tells us that early containers with mouth-like spouts were symbols of the goddess, the source of life, water or in this situation, money. Money is the source of life for medical research. From the three pitchers that represent special interests, drug companies, and the investment community, the money tubes flow through the vessel of politicians. The money from the sources buys politicians by funding their campaigns. Then the political party in control of Congress determines how much and where the research money is spent. Buzzing around all the large vessels are legal liability attorneys who work for who ever pays them.
A lot of the money from politicians goes out to the National
Institutes of Health or NIH, the Food and Drug Administration or FDA and nonprofits
or NGOs. From these three well-intentioned entities, the money is fed into the
central form representing the Great Goddess Artemis, the goddess of life and
death and in this situation, the symbol for medical research. Once the money
enters medical research some of the money dead ends and goes nowhere as dead
data. Successful data from successful research can also end up unaccounted for; data often becomes available to the public depending upon the ethics and whims of the
scientists doing the research.
Moving fan at the top symbolizing the 8 karmic winds.
Some scientists think and act in terms of what is best for their careers and
not necessarily what is best for patients. This is why there is a fan at the
very top. The fan represents the eight karmic winds of ego; desire for pleasure and fear of pain, the
desire for wealth and fear of loss, the desire for praise and fear of blame,
and the desire for fame and fear of disgrace. The moving fan reminds us
that research projects by governments, organizations, companies and
universities are run by humans and
are therefore vulnerable to fear and desire.
A representation of the Great Goddess Artemis found in Italy.
Academia and Medical Research depicted as Artemis.
The Great Goddess, Artemis, is depicted with multiple breasts that have the capacity to sustain life. What nourishment manages to make it through her continues through the agencies and entities that have the power to serve up care and assistance to patients via Medicare, private insurance providers, doctors and clinics. Ultimately these are the brokers of assistance to patients.
Pills filled with shredded currency.
By the
time the money from special interests, drug companies and investors makes it
through politics, the government and medical research, a very small percentage of
money is left to be distributed to help patients, shown here as tiny capsules
trickling out of the healthcare vessel.
The final vessel represents the patients and in this case, eight
women in my family who died of Lou Gehrig's disease. Each woman represents a family who experienced the loss of a
loved one as well as enormous financial loss while caring for the patient. As
the diagram shows, the patients really are at the bottom of the food chain.
My big, gold, spinning food chain sculpture is currently on display at the Bellevue Arts Museum Biennial Exhibition, Metamorphosis, through February 5.
