Blind to the Real Issue
I volunteer regularly at the CNIB, where I work with adults who are either visually impaired or totally blind. We share a lot of laughter, but I also see glimpses of their heartbreak. Some of them are grandparent age, mourning the fact that the sight of the faces they love is gradually being lost to them. AMD is robbing them of one more look at a beloved spouse or a precious grandchild.
Some of them are younger. One gentleman I have the privilege to work with is in his mid-thirties and the father of three, the youngest of them being just six years old. This man is usually to be found smiling as he tackles whatever challenge the class throws at him, but he has also spoken to me through his tears while he explained that he can't make out his children's faces any more. It hurts him to know he will not see what his children look like as they grow.
I come away from a day there with a feeling of how enormous a hurdle visual impairment is, and how incredibly lucky a person is to be spared that in their lifetime. I come away wishing that medical science could do more to help, wishing I had a magic wand to be waved over my friends in exorcism of the demon that besets them.
I have not come away prepared for the incredible greed that I just learned about, or capable of understanding the depth of callous disregard for suffering that the drug company Genentech is indulging in. They are blocking access to a medicine that can cheaply and effectively save thousands from the descending darkness of macular degeneration.
Current treatments for the condition include drugs that only slow the progression to vision loss, but Genentech has at hand a drug that has returned sight to patients with only one or two injections. Why are they dragging their feet on making it readily available for this use??
Philip Rosenfeld, an American ophthalmologist became aware of Genentech carrying out animal studies that showed potential in eye conditions, using the colon cancer drug, Avastin. Rosenfeld says Avastin "truly is a wonder drug" in the treatment of wet macular degeneration.
Rosenfeld has published his results and a website has been created in the U.S. to gather the experiences of doctors worldwide who have used the drug for this purpose. It has been successfully injected now into more than 7,000 eyes, at low cost because the doctors are able to "split" one phial into dozens of doses. That is where the problem with Genentech arises.
Go to the company's home page and you'll see them refer to themselves as the "company that is making a difference". They boldly claim "we commit ourselves to high standards of integrity in contributing to the best interests of patients". Could that be why instead of applying to license Avastin for this use, they are applying to license Lucentis, the specific component of Avantis effective for the eye condition? Could their high standards of integrity explain why the product they want to market is going to be marketed at ten times the cost per dose of Avastin?
I didn't want to just assume I knew the correct definition of integrity, so I went to my ominpresent dictionary and looked it up. The entry in said lexicon informed me that integrity is to be defined as adherence to moral and ethical principles. I flipped the pages next to ascertain the correct definition of ethics and found that it is a system of principles that deal with the rightness and wrongness of certain actions and the goodness and badness of the motives and ends of such actions.
Now I am going to make an assumption or two. I am going to assume that none of those involved in the decision to go for the dollar sign instead of for the "best interests of the patients" actually has a family member facing the despair of going blind. If they had, it might inspire a little change in their approach, don't you think?
I am also going to assume that everyone involved in this disgusting display of a cavalier attitude toward suffering they could alleviate is totally unbothered by ethics. I am going to assume they are amoral purveyors of a lie. They care nothing for the best interest of anyone other than themselves. They lose sleep over nothing other than the content of their bank accounts.
There is no objurgation sufficient to fully express the moral culpability of their actions. There is no exoneration possible for this contemptible group of money-grubbers. They are trying to claim that their actions are based on concern for patient safety and suggesting that there is little proof that the drug actually does what Rosenfeld and his colleagues say it does. What about those who see now, after being treated with it? If there were only two or three of them, the case might be made that the data was insufficient, but the number of those treated with success is constantly rising.
My question is, why doesn't Genentech update their website? They should reword their claim of concern for the patients to read more like "we commit ourselves to high standards of personal gain and promise we'll try to get around to concern for the patients as long as it doesn't interfere with out profit margin".
At least the honesty could go a little way toward justifying their claim to integrity.
Some of them are younger. One gentleman I have the privilege to work with is in his mid-thirties and the father of three, the youngest of them being just six years old. This man is usually to be found smiling as he tackles whatever challenge the class throws at him, but he has also spoken to me through his tears while he explained that he can't make out his children's faces any more. It hurts him to know he will not see what his children look like as they grow.
I come away from a day there with a feeling of how enormous a hurdle visual impairment is, and how incredibly lucky a person is to be spared that in their lifetime. I come away wishing that medical science could do more to help, wishing I had a magic wand to be waved over my friends in exorcism of the demon that besets them.
I have not come away prepared for the incredible greed that I just learned about, or capable of understanding the depth of callous disregard for suffering that the drug company Genentech is indulging in. They are blocking access to a medicine that can cheaply and effectively save thousands from the descending darkness of macular degeneration.
Current treatments for the condition include drugs that only slow the progression to vision loss, but Genentech has at hand a drug that has returned sight to patients with only one or two injections. Why are they dragging their feet on making it readily available for this use??
Philip Rosenfeld, an American ophthalmologist became aware of Genentech carrying out animal studies that showed potential in eye conditions, using the colon cancer drug, Avastin. Rosenfeld says Avastin "truly is a wonder drug" in the treatment of wet macular degeneration.
Rosenfeld has published his results and a website has been created in the U.S. to gather the experiences of doctors worldwide who have used the drug for this purpose. It has been successfully injected now into more than 7,000 eyes, at low cost because the doctors are able to "split" one phial into dozens of doses. That is where the problem with Genentech arises.
Go to the company's home page and you'll see them refer to themselves as the "company that is making a difference". They boldly claim "we commit ourselves to high standards of integrity in contributing to the best interests of patients". Could that be why instead of applying to license Avastin for this use, they are applying to license Lucentis, the specific component of Avantis effective for the eye condition? Could their high standards of integrity explain why the product they want to market is going to be marketed at ten times the cost per dose of Avastin?
I didn't want to just assume I knew the correct definition of integrity, so I went to my ominpresent dictionary and looked it up. The entry in said lexicon informed me that integrity is to be defined as adherence to moral and ethical principles. I flipped the pages next to ascertain the correct definition of ethics and found that it is a system of principles that deal with the rightness and wrongness of certain actions and the goodness and badness of the motives and ends of such actions.
Now I am going to make an assumption or two. I am going to assume that none of those involved in the decision to go for the dollar sign instead of for the "best interests of the patients" actually has a family member facing the despair of going blind. If they had, it might inspire a little change in their approach, don't you think?
I am also going to assume that everyone involved in this disgusting display of a cavalier attitude toward suffering they could alleviate is totally unbothered by ethics. I am going to assume they are amoral purveyors of a lie. They care nothing for the best interest of anyone other than themselves. They lose sleep over nothing other than the content of their bank accounts.
There is no objurgation sufficient to fully express the moral culpability of their actions. There is no exoneration possible for this contemptible group of money-grubbers. They are trying to claim that their actions are based on concern for patient safety and suggesting that there is little proof that the drug actually does what Rosenfeld and his colleagues say it does. What about those who see now, after being treated with it? If there were only two or three of them, the case might be made that the data was insufficient, but the number of those treated with success is constantly rising.
My question is, why doesn't Genentech update their website? They should reword their claim of concern for the patients to read more like "we commit ourselves to high standards of personal gain and promise we'll try to get around to concern for the patients as long as it doesn't interfere with out profit margin".
At least the honesty could go a little way toward justifying their claim to integrity.

3 Comments:
Genetech is in the business of enriching shareholders. If that means dubious, unjust and morally bankrupt actions -- so be it, as long as it is legal. Shareholders will be richer, and Genetech would have done their job. The point Genetech seems to have missed is that if they price the drug so far out of reach, they will hardly achieve the volume. They already make the drug, so the cost of producing it for cheaper sale isn't prohibitive. The other point that seemed to have passed by Genetech, is the qualitative benefits of selling the drug for a lower price. The amount of public goodwill a lower price would bring would certainly be far greater than the profits of a high price drug. The only problem is, the goodwill is a long term benefit -- the money is in the here and now.
Right on. I don't expect it would do any good but people might try going to http://www.gene.com/gene/index.jsp, which is genotech's website, and send them your objections.
Genentech ... Genentech ... not Genetech! Arrrgh!
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