Allison Bolt

ALHE 5500

Lorenzo’s Oil quiz

1. What was the primary disease in this movie and whom did it affect?

Adrenoleukodystrophy is the disease that affects boys ages 5-10.  Lorenzo was the person that actually has the disease, but his parents and other family were indirectly affected by his disease.

2. How would you classify the disease' impact on the patients functional status. mild, moderate or severe, and why?

To begin with Lorenzo’s status was mildly affected initially, but it soon became a severely debilitating disease that caused him to lose his sight, movement and other bodily functions.  This child quickly became a total care patient.

3. In your opinion, how did the research doctors regard Lorenzo's parents?

In general, the researchers seemed to be very hesitant to become involved with the Odone’s at the level the Odone’s desired.  Dr. Nicolias was the researcher that got involved most directly with the Myelin Project and that was largely due to his established work on ALD as well as the Odones’ persistence.  The researcher in London was immediately willing to help in their quest for a treatment.  Dr. Nicholias seemed to think the Odones were not realistic about Lorenzo’s ALD nor were they realistic about the quest for a potential therapy intervention.

4. "The roles of the researchers were juxtaposed or changed in this movie." Explain why this is true.

If I understand the question correctly, the official researchers were not the true researchers in the quest for Lorenzo’s oil initially.  The Odones, unofficial researchers, were the true researchers for Lorenzo’s oil.  They did all of the preliminary research work.  After the Odones did the initial start up work, by the end of the movie, the official researchers had taken on the position of true researcher.  The scientists were swayed by the results the Odones got with their own personal trial study even though it was not truly a scientific study with controls, etc.

5. Dad had a breakthrough at the library - explain the paperclip analogy/model.

Augusto used the visual aid of linking paperclips together to demonstrate the long chain fatty acids.  He also used two different types of paper clips to represent the two different sources of these fatty acids, one being the ones ingested and the other being the ones the human body manufactures itself.  As he went over and over this model, he came to realize the relationship these two sources of fatty acids had on each other was of an inverse relationship and that they were the same enzyme.  This is what Dr. Nicklias referred to as competitive inhibition. Oleic acid (C18) needed to be supplemented by eruic acid (monounsaturated C22) to block the saturated fats of C22 & C 24 which were causing the demylenation.

6. Dad was concerned when Lorenzo's friend came from Africa to live with the Odone's and care for Lorenzo. What was Dad's primary concern?

He was concerned that Amorie should not be pulled out of his way of life to have to experience prejudice against his race and religion, and the barrier of language in the US.  He was also concerned that Amorie would be startled or upset when he saw the actual condition Lorenzo was in.

7. Who was the first human subject to consume the oil and how was it dosed and administered through what portal (ingested, injected, absorbed, inhaled, or other)?

Lorenzo was the first to trial the oleic acid via feeding tube with the “off the record” dosing advice of Dr. Nickolias.  Michaela’s sister Deidre was the test “rat” for the subsequent mix of oleic and eruic acid via ingestion as dressing on a salad.

8. What is the role of money in this research product? Who paid for most of the early groundbreaking research?

Funding played a major role in the propulsion of this project.  Without monies, this project would have either never occurred or occurred at a much slower rate.  The Odones used their own finances to fund the research.  They even took out a second mortgage to do this.  They basically chose their son’s wellbeing over financial security.

9. The critical mass theory suggests that multiple researchers conclusively find (or frequently stumble upon) an answer to a scientific inquiry. Were the researchers on a single path to finding a cure for this disease?

It seemed that each researcher had no correlation to the others until they just so happened to encounter the Odones.  Dr. Nickolias had already begun research on how diet affected boys with ALD.  The biochemists that provided the oleic and eruic acids had no research addressing such an issue.  They simply provided the oils.

10. Consider ethics for a moment. Does this movie represent an appropriate ethical model for research. Defend your answer.

If one strictly took the information that the Odones presented and used it as supporting evidence as the basis of recommendation for therapy treatment, I believe this could possibly be seen as a bias trial.  If an outside researcher went back and did a retrospective study of all of the different approach to treatment and specifically stated that the Odones’ information was not strictly done scientifically, this could follow at least partially the ethical model for research. Based on their circumstantial findings, an outside researcher could recommend further studies with a control group be performed to formally confirm or deny these findings.  This would be the most reliable and valid study.