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"It was a dark and stormy night..." How all scary stories begin.
My Dad has macular degeneration in both eyes. The type he has is called "wet macular degeneration". Abnormal blood vessels begin to grow and they swell and leak enough that they scar the retina. Up until about 3 years ago this type of macular degeneration was not very treatable. The best a person could hope for was to have a treatment that slowed the loss of their vision. It wouldn't save it, just slow the eventual loss of sight. My Dad lost most of the sight in his left eye about 5 or 6 year ago.
About 3 years ago he started to lose the sight in his right eye. It was a very traumatic time for my Dad and Mom. We were desperate to try to do anything we could to save his remaining eyesight. My Dad loves to read and does crossword puzzles every morning. It was a scary prospect. At the same time my Dad started to lose sight in his right eye, a new treatment was becoming available for macular degneration that seemed to work well with the difficult to treat "wet" kind. A company, Genentech, had been developing a a treatment for tumors in the form of a drug called "Avastin". Avastin was designed to attack the blood supply of tumors to stunt their growth. Researchers noticed that the patients being treated by this drug who also had macular degeneration often regained much if not all of their sight. Turned out that for many people suffering from wet macular degeneration, Avastin effectively cured them. My Dad got in on some of the first treatments available to the public and what do you know? It worked like a charm. It was truly like a miracle. My Dad's eyesight in his right eye is better than it was before it started to go bad.
Fortunately, this story ends happy but there is more to it. To save the sight in my Dad's eye, he must have a shot every 3 months. The shot is administered in the eye. It isn't as uncomfortable as it sounds, it takes all of 15 minutes, doesn't hurt and he is back to normal the next day. There are some risks, though. Each time he gets the shot, there is some risk of retinal detachment and infection. The shot of Avastin costs about $50. Through some rule or law I don't understand, Genentech could not charge more for Avastin becuase that is what they were charging when it was being used to treat tumors. In other words...now that they had stumbled upon a great demand for Avastin, they could not inflate the price to gouge their patients for more profit.
This simply was not an insurmountable problem for Genentech. All they had to do was develop a "better" drug...similar to Avastin. Doing that would allow them to charge more. It took them almost no time to develop "Lucentis". The advantage of Lucentis was that it infused into the eye faster and therefore was a quicker more effective treatment than that loser drug Avastin. To recoup the cost of the research and development of Lucentis..Genentech felt the need to charge up to $2,000 per shot for the new and improved drug. I forgot to mention that Lucentis does not just infuse into the eye faster, it also leaves the eye faster. This means that my Dad would have to take a shot of Lucentis every month to equal the effectiveness of Avastin. $2,000 a shot and 3 times the risk of infection and retinal detachment. Genentech was so proud of this new drug they were threatening to make it impossible for patients to use Avastin. Even if that drug was working well for someone at $50 a shot every 3 months, they were going to force them to switch to the "new and improved" version. Needless to say, I was angry and ready for a fight. The difference in cost was riduculous, but that was not the worst part. Genentech was willing to risk possibly harming my Dad to increase their profit. My Dad has insurance that would have paid for Lucentis, but the health risk was an unbelievable consequence.
Ultimately, eye doctors and patients were so outraged over the possibility of losing Avastin as a possible treatment, it is my understanding that Genentech backed down. Patients who receive effective benefits through the use of Avastin are able to continue with that program. Many people end up using Lucentis now, though. Maybe that treatment is the most effective for them. I really don't know. I do know that I am skeptical.
This is a very specific and authentic illustration of how things can go bad under our current healthcare system. Patients taking Lucentis are paying somewhere around $24,000 a year for their treatments while those on Avastin are paying less than $1,000 for what I believe is a safer, more effective program. Insurance companies are inflicted with most of that increased expense which contributes to the spiraling cost of our health care.
We are so lucky that we have this treatment available. The saving of my Dad's eyesight is truly miraculous. The manipulation of the treatment to create profit is immoral and unethical.
We need reform now.
On a side note, many eye care professionals believe that stem cells may eventually be used to repair scarred retinas and bring sight back to people who have been blinded with macular degeneration. How much farther down that road would we be if our last administration had been.....well.....good.
Time to stand up and fight the fight.
About 3 years ago he started to lose the sight in his right eye. It was a very traumatic time for my Dad and Mom. We were desperate to try to do anything we could to save his remaining eyesight. My Dad loves to read and does crossword puzzles every morning. It was a scary prospect. At the same time my Dad started to lose sight in his right eye, a new treatment was becoming available for macular degneration that seemed to work well with the difficult to treat "wet" kind. A company, Genentech, had been developing a a treatment for tumors in the form of a drug called "Avastin". Avastin was designed to attack the blood supply of tumors to stunt their growth. Researchers noticed that the patients being treated by this drug who also had macular degeneration often regained much if not all of their sight. Turned out that for many people suffering from wet macular degeneration, Avastin effectively cured them. My Dad got in on some of the first treatments available to the public and what do you know? It worked like a charm. It was truly like a miracle. My Dad's eyesight in his right eye is better than it was before it started to go bad.
Fortunately, this story ends happy but there is more to it. To save the sight in my Dad's eye, he must have a shot every 3 months. The shot is administered in the eye. It isn't as uncomfortable as it sounds, it takes all of 15 minutes, doesn't hurt and he is back to normal the next day. There are some risks, though. Each time he gets the shot, there is some risk of retinal detachment and infection. The shot of Avastin costs about $50. Through some rule or law I don't understand, Genentech could not charge more for Avastin becuase that is what they were charging when it was being used to treat tumors. In other words...now that they had stumbled upon a great demand for Avastin, they could not inflate the price to gouge their patients for more profit.
This simply was not an insurmountable problem for Genentech. All they had to do was develop a "better" drug...similar to Avastin. Doing that would allow them to charge more. It took them almost no time to develop "Lucentis". The advantage of Lucentis was that it infused into the eye faster and therefore was a quicker more effective treatment than that loser drug Avastin. To recoup the cost of the research and development of Lucentis..Genentech felt the need to charge up to $2,000 per shot for the new and improved drug. I forgot to mention that Lucentis does not just infuse into the eye faster, it also leaves the eye faster. This means that my Dad would have to take a shot of Lucentis every month to equal the effectiveness of Avastin. $2,000 a shot and 3 times the risk of infection and retinal detachment. Genentech was so proud of this new drug they were threatening to make it impossible for patients to use Avastin. Even if that drug was working well for someone at $50 a shot every 3 months, they were going to force them to switch to the "new and improved" version. Needless to say, I was angry and ready for a fight. The difference in cost was riduculous, but that was not the worst part. Genentech was willing to risk possibly harming my Dad to increase their profit. My Dad has insurance that would have paid for Lucentis, but the health risk was an unbelievable consequence.
Ultimately, eye doctors and patients were so outraged over the possibility of losing Avastin as a possible treatment, it is my understanding that Genentech backed down. Patients who receive effective benefits through the use of Avastin are able to continue with that program. Many people end up using Lucentis now, though. Maybe that treatment is the most effective for them. I really don't know. I do know that I am skeptical.
This is a very specific and authentic illustration of how things can go bad under our current healthcare system. Patients taking Lucentis are paying somewhere around $24,000 a year for their treatments while those on Avastin are paying less than $1,000 for what I believe is a safer, more effective program. Insurance companies are inflicted with most of that increased expense which contributes to the spiraling cost of our health care.
We are so lucky that we have this treatment available. The saving of my Dad's eyesight is truly miraculous. The manipulation of the treatment to create profit is immoral and unethical.
We need reform now.
On a side note, many eye care professionals believe that stem cells may eventually be used to repair scarred retinas and bring sight back to people who have been blinded with macular degeneration. How much farther down that road would we be if our last administration had been.....well.....good.
Time to stand up and fight the fight.
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Thanks for sharing your personal story of how pharmaceutical manufacturers game the system by producing copycat drugs which they rarely if ever test against existing drugs in terms of efficacy.
August 25, 2009 12:51 AM | Reply | Permalink
thanks Norseman
August 25, 2009 2:51 AM | Reply | Permalink
At the time it was shocking to me. Genentech was making claims regarding Lucentis even though there had been no chance for any long term studies. Avstin had at least been out there being used and researched for a longer time.
The bottom line is that it seems to me that peoples health was being put at risk for the sake of profit.
August 25, 2009 8:00 AM | Reply | Permalink
Y'know, at the end of the third paragraph, I was thinking of quibbling with your use of the word "gouge," because it is certainly reasonable to raise prices when something becomes more useful and desirable. And we usually reserve the term "gouge" for someone that charges exorbitant prices during a panic.
But increasing from $50 every three months to $1,000 per month, while trying to withdraw the cheaper product is gouging. I've just scanned some websites and found claims that Avastin isn't all that safe to recompound and inject, and that Lucentis really is harder to develop, but it still sounds like gouging.
I think this exemplifies the problem with health care in a nutshell.
You sure are, it sure is, and someone at Genentech certainly deserves to profit from their efforts. But determining when they cross the line from fair profit to gouging for miraculous cures is not always as clear as it is in this case.
August 25, 2009 9:53 AM | Reply | Permalink
Part of my feelings on this are based upon my Dad's eye doctor at the time. He was outstanding. He believed the research done on Avastin was more extensive and reliable than the research available on Lucentis at the time. He said there were some complications reported with Avastin, but that they were minimal and because the people participating in the research were often older..it wasn't very easy to always attribute complications to the medicine. In other words...a number of older patient being monitored as part of a medical trial might have a heart attack or even pass away during the trial. It may not be related to the medicine at all, but they still become a statistic.
I agree that pharmaceutical companies deserve to profit from their products and that those profits do fund continued medical developments. I don't believe that is what happened here. To me, Genentech overplayed it at the risk of peoples health.
Lucentis came out quickly after Avastin started being used for macular degeneration. Our Doctor said it was basically Avastin, but with less clinical study and less of a lasting effect. It is hard for me not to believe the company was trying to maximize profits while risking, to some measure, patients health.
August 25, 2009 10:12 AM | Reply | Permalink
Very good blog, Norseman. But I have a question to pose to you and donal: what constitutes "fair profit." It seems this concept is never quantified. A long time ago I asked a local vet what the difference was between animal medicines, which were packaged in gallon jars all over the shelves of his clinic, and what we bought at the drug store. "There is no difference - they all come out of the same vat." Also, I live a stone's throw from the Mexican border, where you can purchase many of the same drugs as in the US, including exotics such as you are writing about, for a tenth of the cost. How does that work? What is "fair profit" in the context of a multitude of markets where the products are sold at wildly variable rates? The real question is, I suppose, if someone quantified "fair profit" would they then be branded a socialist?
August 25, 2009 1:46 PM | Reply | Permalink
I definitely see your point neoboho. Part of it is complicated. The profit companies generate from their medicines supports our economy and helps fund research for more medicine that may provide life altering benefits for those who need it.
The uncomplicated part is not putting the profit you make ahead of the health of your consumers. If these types of decisions were based on what was most beneficial for the patients, I bet there are smart people working at these companies that could come up with a reasonable plan. A plan that makes medicine affordable and available, yet still provides profit for the company and for research into new medicines.
It probably isn't an exact science, but I bet some pharmaceutical companies could do a better job.
August 25, 2009 2:20 PM | Reply | Permalink
Maybe we need to establish THAT! Maybe we should make it so that nothing ever nets more then 9% profit. If a company wishes to raise the salaries of its employees with income in exess of 9% that's great. It returns their profits to 9%. Or, we could have an annual distribution after the 9%.
Why 9%? because God gets 10%, so no one should make more money then God!?!
August 25, 2009 2:46 PM | Reply | Permalink
What is fair profit? Tough question. Heinlein used to advise everyone to charge what the market will bear, figuring that if someone charges too much, customers can always go elsewhere. But that only works in truly open markets. He also wrote:
"There has grown up in the minds of certain groups in this country the notion that because a man or a corporation has made a profit out of the public for a number of years, the government and the courts are charged with the duty of protecting such profit in the future, even in the face of changing circumstances and contrary public interest. This strange doctrine is not supported by statute or common law. Neither individuals nor corporations have any right to come into court and ask that the clock of history be stopped, or turned back, for their private benefit."
Without a completely open market, fair profit can no longer be determined by impartial market forces.
August 25, 2009 4:50 PM | Reply | Permalink
I believe many drug companies receive federal funds for medical research and development. The research is controlled by the Bayh-Dole Act meaning the government retains some, but not many, rights to a patent.
In the case of two drugs, Norvir for HIV/AIDS and Xalatan for glaucoma, the NIH was petitioned for "march in" rights when the companies raised their prices for US customers only. In the case of Norvir, the rise in price was 400%. Both companies refused to either lower their prices or license the products to other companies. The NIH refused the requests in 2004 and 2006 because both drugs were available and the NIH thought it should not be in control of pricing.
Fair profit?
August 26, 2009 12:29 PM | Reply | Permalink
Interesting point, neoboho. I was just told last night that the antibiotics in put in my fish tank are the same composition of the pills that I pay $1 a piece from my dentist!
August 25, 2009 7:44 PM | Reply | Permalink
The sad thing is, the forces of evil that be will try to use the Avastin/Lucentis, which is better? debate to illustrate their howl about 'rationed care', ie., "Dad has macular degeneration and the the mean old public option plan MADE HIM USE THE OLD DRUG BECAUSE IT WAS CHEAPER." Okay, done with the ranty part.
I'm glad to hear that your dad is doing so well with his vision problems and perhaps with the new research going on now with stem cells, there will be a permanent cure. I have been following the research for years because my own vision is affected by a macular disease. (Not degeneration though.)
You are much too kind to them, goat herder. ;o)
August 25, 2009 10:12 AM | Reply | Permalink
I am sorry to hear of you eye trouble and I hope you are getting effective treatment. Hang in there.
August 25, 2009 10:28 AM | Reply | Permalink
Indeed:
This will probably ring true to many people because they hold fast to an irrational assumption: "if it costs more, it must be better; if it's cheaper, it must be worse."This assumption would be rational if people were rational, because then nobody would bother with the more expensive, not-as-good item, and it would either become cheaper (reflecting its "not as good" status) or vanish from the market. But people are, as in the Dan Ariely book, predictably irrational.
August 25, 2009 1:18 PM | Reply | Permalink
You are right I am sure. The truth is the opposite I believe. I think it is difficult for someone today to even know to ask for Avastin. I think many with macular degeneration are now not even told about avastin and are put on Lucentis. Avastin is only available if you doctor specifically asks for it. I would guess many just go with the new drug advertised as developed for this treatment.
It is a sad situation from many angles.
August 25, 2009 10:18 AM | Reply | Permalink
It is more then sad. It is despicable and worthy of contempt.
August 25, 2009 2:48 PM | Reply | Permalink
One has to ask, why would insurance be in bed with pharma. Charging $2000 can't leave much for insurance to retain. Why is medicine in bed with Pharma? These corporations prey on medical professionals with no concern for any other outcome then profit margin. If it works or not is irrelevant. How much money did they make?!?
August 25, 2009 3:15 PM | Reply | Permalink
What a great post. Goes hand in hand with Obey's.
These stories are indispensable to understand this issues concerning health care.
AND I LOVE HAPPY STORIES ONCE IN AWHILE!!1
August 25, 2009 3:47 PM | Reply | Permalink
Thanks Norseman
August 25, 2009 9:03 PM | Reply | Permalink
Wow, Norseman. My dad has the same problem and is also getting the Avastin treatment every 3 months. While it definitely saved him from total blindness, he had complications a couple of years ago from hemorrhaging in his eyes because he was on a blood thinner at the time. But as far as I know, his doc told him the same thing about the difference between Avastin and Lucentis.
August 26, 2009 12:13 PM | Reply | Permalink