The film Extraordinary Measures is based on a true story which follows the journey of a father who is determined to save his young children’s lives. John and Aileen Crowley have three kids, two of which who have a rare genetic disorder called pompe disease. Pompe disease is a rare inherited disorder in which the glycogen in the body is not broken down, and thus the glycogen builds up within the body’s cells. This can cause muscular dystrophy and eventually lead to enlarged organs. The children born with this disease often times live a very short life of about ten years and die because their organs can no longer function with this glycogen build up.
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In the film, John Crowley has two children with pompe, but the story revolves around his eight-year-old daughter Megan. Megan just recently turned eight years old when she fell ill and was rushed to the hospital because to her respiratory system was starting to fail. While in the hospital, the doctor spoke to John and Aileen about Megan’s conditions. When explaining that her chances of survival were slim, he used the phrase “think of it as a blessing” when talking about Megan’s impending death. While the doctor was trying to help the Crowley’s with this situation, the Crowley’s obviously didn’t want to think of their daughters passing away as a blessing. Though Megan survived, John didn’t want to sit around and watch as his children were slowly dying in front of him, so he took matters into his own hands and reached out to Dr. Robert Stonehill. Dr. Stonehill was a scientist who was researching pompe disease and the enzyme that breaks down the glycogen in the body, which is missing in those diagnosed with the disease. During their meeting, Dr. Stonehill explained to John that the university wasn’t providing enough funding to allow him to further test his theory about the missing enzyme. When he told John that he needed at least half a million dollars, John and Aileen decided to create a pompe disease foundation to help raise the money to create the treatment.
As John worked as an advertising executive, Dr. Stonehill saw that as an opportunity to work with John to create their own biotech company to research the enzyme. The only issue with this was they needed a lot more funding then the foundation was able to raise. Though John tried to get Dr. Stonehill to meet with investors, he was very uncooperative. Though the two of them often disagreed with one another, the one thing they agreed on was that it was important to find a treatment for the disease, thus allowing them to eventually come to terms and sign a business deal.
Months into research on the enzyme, John realizes that the investors were unhappy with the slow progress of the study. Dr. Stonehill and John had promised that they would bring the enzyme into clinical trials in a year, but they weren’t making enough head way to do so. This lead to another disagreement between John and Dr. Stonehill, resulting in them selling their company to the competition. Dr. Stonehill, being the stubborn man he is, angered and annoyed many people in the company, leading to John going behind his back to make the competitors happy. A group of researchers, excluding Dr. Stonehill, went on to further enhance the enzyme. Eventually, the drug was approved to go into clinical trials, but the scientists agreed that they would use it on infants. As Johns children weren’t infants, they wouldn’t be treated with the enzyme, which was John was working towards the whole time. This lead to John doing some unethical things, such as breaking into the lab and trying to steal the enzyme himself to give it to his children. Luckily, Dr. Stonehill was able to get John out of trouble, but there was still the issue that John worked for the company and using his children in clinical trials would be a conflict of interest. The movie concluded with John getting fired from his job, allowing them to use his two children in a sibling study. The film ended with his children laughing in their hospitals beds, showing what is called a “sugar high,” indicating that the enzyme was indeed working and breaking down the glycogen.
In the beginning of the movie, it seemed to relate with the topic of the patient-professional relationship that was discussed in an earlier lecture in this course. When the Crowley’s had a health scare with their daughter Megan, it seemed as if they didn’t have a good relationship with the doctor. I understand that the doctor was trying to be professional and make sure not to give the family a false hope, but I believe that there could have been a different way to go about telling a family that their daughters chances of survival were slim. The doctor had used the phrase “think of [Megans passing away] as a blessing.” Personally, I feel as if using that phrase came off as a little insensitive. There is no easy way to tell parents that their child’s chances of surviving were low. Also with the case of pompe disease, the family must need to visit various doctors all the time, so I’m not sure if they have enough time to have a good relationship with the many doctors that they visit. Even so, when dealing with a disease as serious as pompe, I do believe that it would benefit the family to have a doctor that they trusted and had a good relationship with.
Another topic that was discussed in this course was death and dying. When faced with death, many people often turn to religion as a way to cope. Though death was heavily touched in this film, religion was only mentioned once or twice. The part that stood out to me in the film regarding religion was when Megan was in the hospital when her respiratory system was starting to fail. John had mentioned later in the film that when she was on her death bed, he has prayed to God that if it was her time, that she would die fast and peacefully. While Megan herself did not pray, her father had turned to religion as a coping mechanism. When Megan did not die, John used this as inspiration and a sign from God that he needed to be the one to help save his daughter. This just shows one of the many ways that people can turn to religion to make themselves feel better.
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Personally, I think the thing about the movie that related most to this course is the ethics that are involved in this movie. It seems as a huge dilemma in this movie was between John and the scientists differing points of view. John was very passionate about finding a treatment for pompe disease because he was closely linked to the disease through his children who were affected by it. He was desperate to save his children’s lives. In the movie, it seem that his desperation got the best of him and he would have done anything to save his children such as stealing the enzyme from the lab. Though he didn’t end up stealing the enzyme, he was willing to do anything to help his children. I know that if I was a parent, I would probably do anything myself to help my children live longer. Though the love he had for his children was strong, that still doesn’t make what he was about to do right.
When it came to the scientists, they were very conservative with what they did. They followed the rules very seriously. Dr. Stonehill on the other hand did not. He was also willing to do anything to help these children. When John brought in the families who were affected by pompe disease, one of the scientists was upset. He explained to John that science was not a field that should get mixed up in emotions. If the scientist got emotional, they were willing to do anything to save those children’s lives, even changing the results to show that the drug worked. While I do agree that its important the scientist is truthful about the results, I also believe that being emotionally connected to a project could benefit the scientist in a way. I see nothing wrong with a scientist being motivated by their emotions to work on a project, as long as the scientist is truthful in their results. They need to remember that their job is to help people, and if they skip steps or lie about results, that could ultimately hurt more people in the long run.
The film Extraordinary Measures touched many of the topics that were mentioned in this course thus far. It showed examples on how it is very important to have a medical team that you have a good relationship with and trust. In hard times, such as having a close call with losing a child, I believe that it is extremely important to have a good support system. In that support system, I think that it’s also important to be able to have a doctor that you trust fully. You want to know that your child or loved one is not only in the hands of someone that knows what they are doing, but someone who cares about them as a patient. It showed that many families, if not the patients themselves, turn to religion as a coping mechanism during hard times. I believe that it is very therapeutic to turn to religion as a coping mechanism in hard times. Like in Johns case, he used religion as an inspiration and push into looking for a cure for his children. Personally, I am a firm believer that everything happens for a reason. This way of thinking can be hard if something terrible happens, but in the end I do think it helps with looking at the silver lining. The film also showed that it may be hard to be passionate about something but also to follow the rules and not let your emotions get in the way of the purpose of the study. Passion is a very good motivator for many things and people. It can help you get through the days that you feel you are too tired to do something. It can help you push through the bad days when it feels as nothing is going your way. It’s a fantastic motivator if you use it the correct way. You need to make sure that your passion doesn’t cloud your judgement and get in the way of ethical solutions.
Overall, I think the movie showed the importance of teamwork in the medical field. While it is important to be passionate about what you do, it is also important to be reasonable. John and Dr. Stonehill showed passion in different ways. John showed passion in finding a cure as his children’s lives were depending on the cure and he was running out of time with them. Dr. Stonehill showed passion in his research and finding a treatment to help those who had the disease. The scientists in the movie were the more responsible, logical characters. The scientists, while wanting to find a treatment, also knew the importance of following policy. They didn’t want to pursue a study if there were not going to be any results. They knew the FDA regulations, and wanted to make sure that they were followed. As much as they wanted to help find a treatment, they wanted to make sure they were not overly optimistic and there was a successful outcome in the end. This movie is a direct indicator that humanities are important in not only the medical field, but any science field, and as long as people work together and combine their knowledge and the humanities, they can make a difference in the medical field.
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