Educational Media Reviews Online

Here. Us. Now. is a documentary that explores an emerging movement in healthcare, specifically biomedicine and biotechnology. Rudiger Poe investigates a family’s journey through the diagnosis, treatment of, and advocacy therapy and treatment development for rare diseases.

The Hempel’s twin daughters were diagnosed with Niemann-Pick Type C, which is a rare genetic disease that results in progressive neurological deterioration. There is currently no cure. The Hempels, medical doctors, and health care advocates determine that the processes by which new drugs and treatments are developed are often bogged down by the stringent academic processes of tenure, publication, and grant application as well as outdated healthcare and privacy laws. One claim purported by the film is that if medical research were more open access and collaborative rather than repressed by outdated processes, it may be possible for more entrepreneurs to examine the 6,500 opportunities that each rare disease provides for definition of the “scientific problem, clinical need, and economic opportunity.” For this to occur, however, the Hempels and others indicate that the research, scientific, and legal processes need to be more standardized, to allow for the open sharing of data and information. Further, the pharmaceutical industry operating under the premise that most Americans don’t understand that currently available drugs don’t work in 30%-40% of the cases in which they prescribed, but they are prescribed as it is unknown whether they will work or not. Also, many of the “big name” drugs are coming out of patent, and there are no new drugs or treatments to replace them.

The Hempels and health care advocates determine that it is time for the patients to start the process of exploring options for health care and advancing the need to restructure current processes in place for the development and discovery of new drugs and therapies. The issues presented also indicate there is a matter of morality that comes to play: we should become more concerned with helping others and abolishing disease, than being known for the discovery of the cure, or publishing one’s research in a journal. This film provides insight into how new drugs are developed and made available for consumption. It is a useful resource for students studying genetics, biomedicine, and health care economics.