The Story
San Jose Mercury News carried a very intriguing and interesting story about Johnny Nguyen, a local man who went through a terrific accident and suffered from severe burn injuries and had to lose his left arm, an elbow and all the fingers of his right arm in the consequential surgeries.
You should really read the rest of the story in the article referenced below. It is well written with a human touch, something that is rare in journalism nowadays.
Finding a prosthetic
Postulated severally in science fiction and future facing non-fiction, the 21st century is a time where losing a limb doesn't necessarily have to be permanent. However, this is easier said than done.
For one, development of efficient prosthetic devices that mimic a functional human arm, as opposed to a rudimentary hook (which is what Johnny started wearing initially following his surgeries) is very expensive.
Secondly, one has to find a way to afford these devices. Here are a couple of observations I made from the article, which, of course I cannot substantiate with proof from elsewhere:
1. Johnny's friends tried to contact several organizations that make such prosthetic devices. Enigmatically, the article mentions that the company from Scotland responded. I wonder what happened to all the US companies that were contacted. I also wonder how many companies develop prosthetic devices in the US....if there are enough companies developing such prosthetic devices locally, why have they not responded?
2. Johnny appears to have been someone that interested the company that did pay for his device, so that they could use his case to study how to use the prosthetic devices in situations involving other fire injury victims. Given the paucity of people within the US that normally sign up for any experimental therapies or in many cases, clinical trials at all, shouldn't local companies scramble to enroll people like Johnny as quickly as possible?
Bionic Touch Foundation
Johnny's friends who successfully teamed up to get him his prosthetic have realized the challenge that the device is going to be expensive for most people who will need them. They have a lofty goal of helping anyone in need of finding an upper limb. They are also offering academic help with regards to the writing needs of those who are looking for a prosthetic. All their efforts deserve a sound pat on the back.
Future Device Challenges
Now that we have gotten all the inspiring stuff out of the way, I thought it might be worthwhile taking a look at some of the challenges facing people who NEED the medical devices and not the ones that MAKE them. The ones that make them, have enough help from dubious "non-profits" already!
Most of the challenges have been discussed previously, but I thought there would be no harm in presenting them again:
1. Accepting the need for trials and experiments: If there is one place where people seem to especially fail, it is in enrolling in new trials. If enough people do not provide support to new procedures and new experiments, science, engineering and medicine cannot progress adequately. Treat yourself less as a victim, and more as a patient and try to find out how you can help yourself and at the same time, if possible, lay the course for the future.
2. Advocacy: I know, I am not making my points in an ideal order, but if more people had paid attention to the healthcare reform debate rather than saying "eh, politics is not for me", maybe things would be better. The cost of devices is dictated by several factors and many of these can be controlled by a conscious citizenry. In other countries, similar struggles will start soon enough. Keep your eyes and ears open, and act, not react. I came across a Chinese proverb that says, "Dig the well before you are thirsty" - enough said!
3. Identify the true leaders among companies: If it takes a company from Scotland to respond to customers with the customer's interest in mind, so be it. Such a company has risen above it's former peers and should be recognized thus. It is also really important to point out which companies fail to respond to customers, at least to provide information. This will let people make their own judgment on who leads and who follows the 90-day magical number dance...
4. Fundraising: All said and done, there will always be therapies and devices that will be necessary, will ride ahead of the reimbursement curve and will be expensive no matter what. Patients and their friends must look to creative ways to engage the local community and the wider populace in raising funds. Look to stories of success to emulate and improve upon with brainstorming.
5. Support Science and R&D: It is appalling that even in this day and age, science faces the same threat as it did in what some folks fondly like to try and forget as the "dark ages". Having politicians dictate science policy has very few tragic parallels in human behavior. Seek, demand and support sound science, research and funding that foster medical progress.
It is very heartening to read such stories of success, and one would hope to see fewer accidents and more success stories of the sort outlined here...
References:
1. San Jose Mercury News: http://www.mercurynews.com/ci_16932213?source=most_viewed&nclick_check=1
2. Bionic Touch Foundation: http://www.bionictouchfoundation.org/
3. Touch Bionics: http://www.touchbionics.com/
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