Food, Drink or Drug Related – Page 7 – education and deconstruction.com

The Cure

The Book of the Week is “The Cure” by Geeta Anand, published in 2008. This ebook tells the emotional, suspenseful story of how a family coped with three disabled children, two of whom were suffering from a genetic disease for which a cure is yet to be found.

In the late 1990’s, John Crowley’s daughter and son were both diagnosed with Pompe disease, a muscle disorder. Patients, with varying severity, “have imperfectly produced acid alpha-glucosidase enzyme” which results in paralysis, obstructed breathing, and, if left untreated, death before the age of five.

Even though Crowley possessed the personality, talents, skills, education and privileged background that one would think would allow him access to a life-saving enzyme to save his children, he had to face numerous obstacles. The father naturally fell into the role of entrepreneur to do so. His wife provided invaluable emotional support and around-the-clock care of the children with the help of nurses; not to mention the running of the household.

Nevertheless, lots of genetic and environmental luck determines whether patients become fully cured and/or whether the quality of their lives improves significantly, or whether they die– even when they are sufficiently fortunate to take part in a trial of a new life-saving medicine. Death would be inevitable without the medicine.

Every patient is different. There are many different criteria the U.S. Food and Drug Administration considers when deciding whether to approve particular medical products for sale. Money plays a major part in whether a new product ever sees the light of day. A young medical research company raises funds through venture capitalists, and because the whole operation carries extremely high risks, if the company achieves success– the rewards, fittingly, are also extremely high.

Scientists must do years of preclinical testing on animals to make sure a new medicine works sufficiently well before even considering administering it to humans. In the United States, possible deadly consequences and possible future litigation motivate the scientists to act with integrity by performing tightly controlled experiments, so as not to have to fudge research results.

Another aspect of drug development, is avoiding a conflict of interest such as that in Crowley’s situation. He played a pivotal role in the race to bring a medicine to market; it appeared he was doing it to get the medicine for his own children.

The estimated annual expense of the enzyme for each child was $200,000, and $1 million for all future annual medical expenses, including the enzyme, plus wheelchairs, nurses, ventilators, catheters, etc.

Read the book to learn of the Crowley family’s experiences with American biotechnology.

Confessions of an Event Planner

The Book of the Week is “Confessions of an Event Planner” by Judy Allen, published in 2009.

This volume contains various realistic scenarios of business, personal and charity events to show the reader the nature of the event planning industry. The acronym for how to prepare for any problems is ABC: Anticipation, Backup plan, Code of conduct.

There is always at least one troublemaker at every business event, who must be watched. The author describes their personality types, a few of whom include those who make unwanted sexual advances; those who feel entitled to a hotel room better than the one they were assigned; men who show off their masculinity, and women who are provocatively dressed.

The author points out that meticulous planning is required with business celebrations to head off possible untoward occurrences. There are companies that try to cheat on their taxes, and business executives who have their hand in the company cookie jar. Irate guests might do damage to hotel property. There may be a male executive officer whose mistress (and secretary) is booked in a separate room, but stays in his room at night. When children are attending an event, the planner has to consider appropriate food menus, food allergies, legal waivers and contingencies for liabilities. Part of the planner’s job is to prevent lawsuits by thinking through safety issues and complying with the law. Sometimes, event employees will recognize a situation in which guests’ behavior is about to spin out of control, and put the kibosh on it. They need to work as a team.

Sometimes event planners must deal with “too many chiefs, not enough Indians” with clients preparing a personal or nonprofit celebration. The goal of the nonprofits is to raise funds, but if the goal of the nonprofits’ events representative is to acquire social power, publicity for herself, or find her next husband, then the charity event may actually suffer a monetary loss. Even when all parties have the best of intentions, the nonprofit event may also be a failure because inexperienced volunteers are running it.

In short, the author provides advice on what to do before, during and after an event to ensure a safe, enjoyable occasion that a planner can be proud of.

The Emperor of All Maladies

The Book of the Week is “The Emperor of All Maladies, A Biography of Cancer” by Siddharta Mukherjee, published in 2010. Through this tome, the author, an attending cancer physician, researcher and assistant professor of medicine, discusses the history of cancer– how it came to be named, treated and researched through the centuries, and how it develops on the cellular level. He also talks about how cancer statistics can be manipulated to give people the impression that the illness is more common than it really is (to scare people into getting tested and treated), or– that treatment (including drugs and surgery) is more effective than it really is.

In ancient times, cancer was rare because lifespans were short. Several other diseases (tuberculosis, dropsy, cholera, smallpox, leprosy, plague or pneumonia) killed people before cancer would. More prevalent cancer testing has also made cancer a more common culprit in the cause of death, rather than, say, the labels, “abcess” or “infection.”

In modern times, specific factors, (like smoking and changes in public hygiene and diet) have increased the incidence of some kinds of cancer, and reduced the incidence of others.

The author points out the difficulties in determining whether detecting cancer early, helps save lives. Some cancers are quick-killing and others are slow-growing. If someone is diagnosed with an early stage of quick-killing cancer. whose treatment is rigorous and unsuccessful, is that a better situation than one in which someone has the quick-killing kind without knowing it, but goes about blissfully living his life, and dies quickly once he is diagnosed? Perhaps the former person lived six months longer, but given his lack of enjoyment of life after diagnosis, he might as well have died sooner.

The author also writes regarding testing, “Using survival as an end point for a screening test is flawed because early detection pushes the clock of diagnosis backward.” Say we have the hypothetical scenario of cancer patients A and B. They both developed the exact same kind of quick-killing cancer at the same time. Say patient A’s illness was diagnosed in 1985 and she died in 1990. Patient B’s illness was diagnosed in 1989 and she died in 1990. But since doctors diagnosed A’s cancer earlier, it seems, falsely, that she lived longer and that the screening test was beneficial.

In 1976, a highly regarded mammography study was done on 42,000 women in Malmo, Sweden. The results showed that a significant number of women 55 years and older benefited from breast cancer screening– the lives of one fifth of them were presumably saved than otherwise. “In younger women, in contrast, screening with mammography showed no detectable benefit.” Many additional studies thereafter reinforced this conclusion by 2002: “In aggregate, over the course of fifteen years, mammography had resulted in 20-30 percent reductions in breast cancer mortality for women aged fifty-five to seventy. But for women below fifty-five, the benefit was barely discernible.”

Mukherjee also describes a moral issue that can arise when it comes to the testing of cancer drugs. A company was reluctant to spend hundreds of millions of dollars to do further testing on what appeared to be a promising new drug for a rare kind of leukemia that might (or might not) benefit only thousands of people. Thousands is considered a small number, compared to millions of individuals whom a drug might help in the long run. The company could spend the same amount of money helping millions. Patients for whom all other treatments had failed, aggressively pushed to be included in the drug trial, arguing it could save their lives. The company did eventually agree to test the drug, but on a small scale. The drug was wildly successful in its first decade for those few who were treated with it. However, a few years later, cancer cells had become resistant to the drug. A next-generation drug had to be developed to continue to keep those patients alive.

The author tries to explain why, even with all the resources currently poured into research for a cancer cure and improving treatment, many cases are still fatal even in industrialized countries. Nevertheless, he points out– there are pitifully few resources being thrown into prevention. I suspect it is just not as lucrative as research and treatment.

Don’t Try This At Home

The Book of the Week is “Don’t Try This At Home” edited by Kimberly Witherspoon and Andrew Friedman, published in 2005. This is a compilation of anecdotes from chefs who encountered some difficult situations during their careers. Some told of “making lemons from lemonade” and others gave a general overview of their experiences.

Four chefs whose stories were particularly intriguing, include Daniel Boulud, David Burke, Marcus Samuelsson and Geoffrey Zakarian.

Boulud recounted an episode in which, as culinary chairman of a fundraising event, he and his staff and extra hired help were required to make 1,200 servings of pea soup. The “400 pounds of a variety of five peas” were to be stored in “25-gallon stainless steel containers set in ice water.” Certain people failed to stir the soup hourly overnight, as they should have done, so it fermented. The next morning, “All twelve hundred servings’ worth, was sour, useless garbage.” The guests would be arriving that evening and were expecting high-end pea soup.

Burke is another chef who also saw a serious problem for which he had to come up with a solution quickly. He was supposed to cater a man’s fiftieth birthday party at which there would be a surprise dessert, envisioned by the wife. She wanted a greatly enlarged, custom-made French dessert (“floating islands”) that would serve 200 guests. However, all of the meringues to be used in the dish collapsed, producing a very unprofessional look. It could not be presented at the end of the meal. What to do?

It was a language barrier that caused the Swedish-speaking Samuelsson excessive grief while he was working at a restaurant in Switzerland. This was on New Years’ Eve, no less– one of the biggest nights of the year for business. He was asked to make terrine, which required proper setting of gelatine. He had never used powdered gelatine before, could not understand the German, French and Italian instructions on the package, and did not ask anyone for help. The resulting concoction smelled bad, and resembled bathtub mold. Was it too late to salvage the situation? Samuelsson’s anecdote was the only one in the whole book that exhibited admission of error and true introspection. Kudos to him.

Zakarian tells of how he became a foodie. When he fell in love with France on a college assignment, he scrapped his academic plans to enjoy the fine food there instead. Even so, as a starving student, he led a frugal existence, until two strokes of great good luck allowed him to partake of more luxury than otherwise.