Thoughts on Lorenzo's Oil

Just received back my paper on Lorenzo's Oil, thought I would share it as received a 100%...

DEPARTMENT OF INFORMATION AND DECISION SCIENCES

INFO 378 INFORMATION PROBLEM SOLVING & RISK MANAGEMENT

Fall QUARTER 2010

LORENZO'S OIL

Digital Assignment #1

1. What has happened to the child?

Lorenzo has been diagnosed with a genetic disease named Adrenoleukodystrophy or ALD for short. The disease was only recently, within the past ten years at the time of Lorenzo’s diagnoses, been discovered and named.

2. What has happened to the family?

Gus and Michaela accept the fact that Lorenzo has an illness, but not the fact that such a diagnosis is an effective death sentence. They begin to look for treatment. Upon learning that the disease is so new to the medical community that there is no set course for treatment they have Lorenzo admitted to clinical trials to develop one. None of the clinical trials are overly successful in moving the disease to remission or curing the underlying genetic defect.

However, Gus and Michaela take it upon themselves to become experts in the disease searching for the underlying reasons of:

A: Why does the Very Long Chain Fatty Acid (VLCFA) and the Short Chain Fatty Acid (SCFA) grow at the same rate and yet are broken down at different rates? Are they broken down by multiple enzymes?

B: Why when VLCFA’s are removed from a diet do the levels continue to rise?

C: Which of the VLCFA’s are the likely culprits’ causing the destruction of the myelin? Can those VLCFA’s be blocked from the enzyme that processes VLCFA’s? Why or Why not?

D: Can myelin be replaced once stripped from the nervous system? Why or Why not?

Gus says several times throughout the film that he is a simple minded man asking simple questions. All of these questions are the simplest questions to ask, finding the underlying answers however was more difficult as not of the people were working on the treatment of ALD, but rather the individual components of the disease. You had people producing wonderful insightful research but no one person or group asking how this is relevant to ALD. Gus and Michaela began to ask those questions of the Medical Community and helped to get the first ALD Symposium within six months of the first diagnoses of Lorenzo’s ALD. This symposium leads to the discovery of the first half of Lorenzo’s Oil.

3. What is your opinion, should the child be treated? If so, Why?

Treatment of a child should ultimately rest with the parents of the minor child with the advice of medical opinion; unless such treatment would result in a worsening of conditions to the point that the quality of life of the child is at issue. If and when the quality of life of the child is at issue every effort should be made to make the child as comfortable as possible. This should include stopping all treatment and possibly even the signing of a valid Do Not Resuscitate order. The quality of life of the child should be the most important factor in determining whether or not to treat a child. In the case of Lorenzo, the end result of do nothing was death within two years. By seeking treatment and delaying the effects of the degeneration of myelin for as long as possible with such treatment as diet and ultimately the inclusion of the specialized oil, quality of life was not an issue. His needs were tended to including stimulation of his mind by his mother and father in the form of reading and talking to him.

4. If the child is to be treated, under whose rules?

The parents of minor children have final say, unless those decisions would result in the expedited unlikely death of a child. An Example: A child has a form of cancer that is treatable by chemo with a 95% success rate is denied treatment by his parents. A court order should be applied for as the benefits far out way the risks. In the case of Lorenzo, again doing nothing is a death sentence, by adding the oil, in small quantities, it is unlikely to speed his death and could in-fact prolong his life.

5. Concerning the question of ethics, “Who is right?” Why?

• Parents? Most Parents have their children’s best interests at heart. Because of this is it quite easy to bypass blind studies, and potential impact of untested information is incalculable. All that being said, parents do only want what is best for their children and many are willing to share information as they receive it in the hopes that others will find it useful. This is not necessarily “right” in a scientific sense, but rather right in the moral sense.
• Parent support group? The parent support group has an obligation to the parents ultimately and to a lesser extent the doctors working on the disorder or disease. They should be focused on providing all information to the doctors regardless of where it came from as more data is another piece of the missing puzzle. The parent group in the film is guilty of suppressing possibly life saving and life extending information by refusing to bring the findings to the attention of the doctors.
• Physicians? Physicians have a duty to the patient to provide any medical advice available to the patient so that the patient is capable of making an informed decision as to their health. Physicians also have a duty to do no harm, which can at times conflict with providing all of the information. In the case of Lorenzo’s Oil, Rapeseed oil is toxic in rats according to the studies thus administering such oil would be done in reservations; however rapeseed oil is used throughout India and China as part of the cuisine. This is a case of conflicting information that should be referred to Researchers as you have a conflict in ethics.
• Researchers? Researchers have by far a greater role in the devolvement of treatments and as such they must not appear to contaminate the data and ultimately the study. Consequences to such violations lead to the study being thrown out in its interiority and the data being useless to the group it is intended to help. To that end, Researchers have a duty to incorporate new data as it is made available into new studies so that data is not forgotten or ignored. They have the scientific right, and strive to keep the morals out as they have a duty to all of the people afflicted not just the one or two of the parents.
• Medical Society? Medical Society as whole has a ethical responsibility to share findings on studies and to collaborate on the problems of those studies to ask why. Why did this affect that? What is the reason for that outcome? If this questions are asked of the studies as they come out a picture of the underlying affliction is formed and a treatment can be developed.
• Society as a whole? Unfortunately, society as a whole is not always able to devote the necessary resources to orphan diseases. To that end society has a obligation to ensure that such diseases are researched and treatments sought. The Clinton Administration extended drug patents by six months in exchange for research on children’s drugs and dosage.

6. Who are the heroes?

The Heroes of the film include Michaela, Gus, Lorenzo, the elderly bio chemist from England, and Wendy. Each played a enormous role in the finding, developing, and advocating for Lorenzo and the Oil that was eventually used.

7. What does it take for success?

Success is as always a incredible drive to learn more and to ask another question when you hit a wall after a result. The inclusion of Olive Oil into the diet dramatically lowered the saturated fat from Lorenzo’s blood, but not nearly enough to be a benefit in the long term. It was only by asking why was this working did Gus realize that it was one enzyme not two that was processing the fat. It was then that he realized there could be a way to trick the enzyme into just processing the higher chain fatty acids exclusively.

8. At what price should “success” be accomplished?

Success or the degree of success can only be measured against ones desired outcome. In the case of Lorenzo the success was finding a treatment. The price of that success was Michaela becoming completely devoted to Lorenzo and nearly the cost of her marriage and relationships with her family. She ultimately succumbs to cancer in 2000, 16 years after Lorenzo was diagnosed with ALD, but 14 years longer than they were originally given.

9. What happens if something new is discovered?

When new information is available in an efficient marketplace everyone has instant access to the information. Sadly this is not always the case with medical information as this type of information can harm people. There is a resistance to accepting new information that fundamentally changes and challenges old behaviors and mindsets.

10. Should medical doctors listen to this fellow?

Information is information, regardless of who it comes from. The information is neutral and has no basis.

11. Would you do the same thing for your child?

My middle child is named Gabriel Matthew Fowles. He has my saint’s name (I’m Catholic) and another name of a saint for two reasons. When he was being carried my wife was high risk for miscarriage. She had already miscarried twice before and was terrified of miscarrying again. At the end of the 1^st trimester during routine ultrasounds bleeding was discovered in his brain. The doctor feared that the baby may carry genetic defect that if he was brought to full term would mean a life of less than one year. My wife and I decided to test to find out if he would in fact have this defect. We decided that we would have him regardless of the outcome, thinking that it was better to have a year with him rather than never to know him. The test was negative, the bleeding healed on its own and he is a normal destructive three year old who loves Captain America.

12. How could technology be used to help with this situation?

A central repository of all existing medical research that was cross referenced to each other would be of an enormous help. Unfortunately no such system exists that incorporates all such data.

13. What technology should be used to help the child?

Any technology should be used that helps with quality of life of the child and is deemed of useful value in the devolvement of treatment. Books on tape, charts for time keeping, databases for the storing of data to be cross-referenced, email, video conferencing are all examples of technology that can be used to help the child.

14. What have you learned about problem solving from this story?

Problem solving is as always about looking for answers with data, and using that data to develop information. In the case of Lorenzo, the symposium was where the idea of adding a oil to the diet was first introduced, but it took many different people having different data to be asked a question to bring this to light.

15. How can you apply what you have learned to Information Technology?

Collaboration much like Apple and Microsoft did in the early 1980’s from technology received from Xerox is always a wonderful interchange. These two companies today have exponentially increased the field all because of collaboration from those three companies. The sharing of ideas, the asking of why that is can create great advances in a limited time.