How Long Before A Patent Kills A Hundred Million People?

from the is-this-really-wise? dept

Recent news that Angelina Jolie underwent a preventive double mastectomy because of her elevated risk of developing breast cancer has drawn attention to the Myriad Genetics case currently before the US Supreme Court, and to the whole area of gene patents. Myriad’s monopoly has allowed it to set a high price for its tests — $3000 — and this is bound to have acted as a disincentive for those who were unable to afford such a sum. It is therefore quite likely that people have died as a result of Myriad’s patents.

Here’s another case where placing patenting above patients could lead to unnecessary deaths. It involves the SARS-like novel coronavirus that was first noted in Saudi Arabia, as this Reuters story explains:

The virus was identified in September last year, three months after a scientist took a sample from Saudi Arabia to the Erasmus Medical Center in the Netherlands.

“There was a lag of three months where we were not aware of the discovery of the virus,” Saudi Arabia’s Deputy Health Minister Ziad Memish told the Geneva meeting.

He said it was taken out of the country without permission and Saudi Arabia only learned of its discovery from ProMED, a U.S.-based internet-based reporting system.

The Rotterdam-based Erasmus lab then patented the process for synthesizing the virus, meaning that anyone else who wanted to use their method to study it would have to pay the lab.

The patenting had delayed the development of diagnostic kits and serologic tests for the disease, Memish said.

Fortunately, the virus does not seem to have spread widely during that three-month delay, but next time we might not be so lucky. It seems bordering suicidal that concerns about patenting should over-ride health concerns, especially when a viral pandemic could potentially kill a hundred million people, as it did in 1918. Let’s hope that the Supreme Court recognizes this as yet another reason not to allow patents on genes, and that this becomes part of a broader move to share freely vital knowledge that can save lives and alleviate suffering around the world.

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Comments on “How Long Before A Patent Kills A Hundred Million People?”

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Mark Syman says:

Re: Re:

The article doesn’t say that patenting slowed up development by 3 months.

In any case, under the Ebay v. Merc case, getting injunctions is pretty difficult; pretty every can infringe, but the infringers will have to pay a “reasonable royalty” which is a standard % of profits, the % depends on the type of technology.

Anonymous Coward says:

Re: Re:

I was thinking something similar about Monsanto patenting genes recently. We should sue Monsanto for slavery if their modified DNA ever makes it into people, because by Monsanto’s logic, they’d own you and the fruits of your labor if you have DNA they patented within you. They’d also own your children and the fruits of their labor to, and your grandchildren.

Rekrul says:

Re: Re:

So those that patent the process for finding a cure are responsible for those that die from the disease if reasonable steps haven’t been taken to create a cure.

No, those who patent the process for diagnosing a disease are responsible for those who die from the disease if their patents prevent those people from being diagnosed in time to save their lives.

“I’m sorry. Your mother/sister/daughter might have a rare disease that can kill her, but we can’t be sure because the method for detecting the disease has been patented and nobody has yet marketed a proper diagnostic test for it.”

out_of_the_blue says:

Classic Techdirt "attack patents by what didn't happen".

In fact, the Saudi disease didn’t spread, but that’s not just luck, as no one was prevented from working on it independently. — Except for the lack of samples, and if the “he said” has it correct that was “without permission”, then the Saudi gov’t seems to take a proprietary interest of its own. — So as usual, there’s no end of wrong, whether Myriad with tests, Erasmus with patent, or Saudi gov’t chary of their diseases (there IS a good argument for not intentionally SPREADING it, though). — But in no case should or can the conclusion be drawn from these events that patents as such are bad.

We just need to limit bad actors by removing obscene profits from the equation, then these and similar scams will collapse back to prior levels. — It was taking off limits in the Reagan administration that caused the Savings and Loan bailout (a mere $500 billion), the Microsoft monopoly, the dotcom bubble, the housing bubble and resulting 2008 Bank Bailout ($700 B), plus the continuing wrecking of US economy by The Rich. It’s not a mystery how this all happens, it’s just that economists are paid to tell myths that obscure who’s stealing.

rapnel (profile) says:

Re: Classic Techdirt "attack patents by what didn't happen".

Ay? Don’t be stupid.

This one’s running a better than 50% kill rate and nobody currently knows anything about it much less enough to prevent the spread so “the Saudi disease didn’t spread” is the most asinine thing I think you’ve said in quite some time.. and there are a lot of asinine things you say.

Cases have so far been confirmed in Saudi Arabia, Jordan, Qatar, the United Arab Emirates (UAE), Tunisia, Germany, France and the United Kingdom. And, I believe, one pending in Texas, but don’t hold me to that.

Anonymous Coward says:

Re: Classic Techdirt "attack patents by what didn't happen".

Wow, really? I mean, when I made the post about “curing diseases is helping Big Pharmacy, think of the starving pathogens”, at least I was joking. So your point is that if a disease doesn’t spread it’s benign and not worth noticing? How many people do you need to die off before a disease is worth looking at? How about this – let’s infect you with the disease, and see if anyone needs to bother with a cure?

Anonymous Coward says:

Re: Re:

Haha. There are some very pointy anlogies between weapon debate and this kind of patents.

It would be incredibly easy to make forced compensation rates to ensure a developer of this kind of a cure a good ROI. Unfortunately it is far too easy for patent holders to push for more to gain money instead of saving lives.

Well informed says:


Fact: myriad genetics invested over $100 Million dollars in creating the most accurate test and in research on these genes.
Fact: myriad genetics employs more genetic councilors than any other entity.
Fact: myriad has given away hundreds of not thousands of tests to patients in need of answers.
Fact: myriad genetics and only myriad has fought insurance companies in order to provide coverage for 90+% of the patients that order testing with a appropriate family history of cancer.
What have you done to gain access for these families?

Anonymous Coward says:

Re: Facts

Fact: Myriad Genetics is run by filthy, greedy pigs who would gladly see millions die IF they could profit by it.

(Don’t think so? Then why did they file for a patent? If they weren’t selfish assholes, they would have never even considered such a thing.)

I hope that each and every one of their children contracts a vicious, deadly disease that not only kills them, but kills them brutally. And I hope that the patent on the treatment for that disease is held by another company.

John Fenderson (profile) says:

Re: Facts

Please explain how any of those facts mitigates the threat that those types of patents presents? From where I sit, Myriad looks like a standard, amoral, moneygrubbing corporation. If they had a real interest in doing good, they wouldn’t be patenting and charging usurious rates for that stuff.

By the way, the “fighting insurance companies” bit doesn’t even make them look good on the surface. If the insurance companies are paying those usurious rates, then we’re all paying those usurious rates through our premiums.

madasahatter (profile) says:

Re: Facts

The only fact that matters is they patented a process and are charging ransom to people who could die from the disease. If they were concerned about people they have a couple of options: publish the method in the scientific literature without filing or after filing release the patent to all to use free of charge.

A careful reading of the US Constitution indicates the primary purpose of patents is the promotion of “useful arts”. So if the patent law interferes with the promotion of “useful arts” in the US it could be struck down as unconstitutional.

Anonymous Coward says:

Re: Facts

Fact: The first fact is pure shameless advertisement
Fact: Genetic councilors are beneficial for the companys reputation and sale of tests.
Fact: Giving away free samples is a standard praxis.
Fact: Fighting insurance companies to get a better coverage of your own product? Sounds purely selfserving.
Have you c/p their websites commercials?

sue says:

Re: Re: Facts

no company in their right mind would do $100 million in advertisements. And really, when have you ECER seen an ad for this testing? I never have and I go to every breast cancer walk in california that I can. do YOUR research and stop lying.
2. genetic councilors are there to help people like me and my dr understand the test results and were there for me before I was tested. these tests aren’t for everyone, and I don;t think the company is promoting them as such. so your point is ridiculous. giving away free tests isn’t always standard practice, and good for them and any other company that still does it.
fighting to get insurance coverage if for the patients. yes it helps them, but really if they didn’t do it, who the hell would? you? yeah I don’t think so. you’re too busy typing about things you don’t understand. yes, I have seen their commercials. In fact one of the patient stories is that of a close friend of mine. She is alive because of this test. As am i. I’ve had nothing but great experiences with this company and they truly impressed me in how much they wanted to help us. To those of you who say that everyone working there should die… you should be ashamed of yourselves. No matter what we argue about cost, this test does save lives. And in comparison to what my mother paid to fight her cancer, it was far over $800,000. In that regard, even if i had to pay out of pocket, which i didn’t, $3000 is NOTHING in comparison to the quality of life I have as a previvor and not a cancer patient.

Anonymous Coward says:

Just to play Devil's Advocate

How many would have died if Myriad had never developed the tests because they didn’t see a fat monopoly payday in their future?

Would someone else have created them on a less lucrative basis? How much later?

I understand the humanitarian impulse to appropriate medical patents for the public good, but there’s a bit of killing the goose that layed the golden eggs in that.

There must be a middle ground somewhere.

Ophelia Millais says:

Re: Just to play Devil's Advocate

If the only people with the ability to develop a test for a deadly virus are so ethically challenged that they need to be “motivated” by a fat monopoly payday, then it’s going to take a massive die-off of humankind before people get their priorities straight and realize that just because you can charge for something doesn’t mean you should.

the way it goes says:


that’s the way it goes now days. Greed keeps the population from knowing and therefore dying from lack of information. If there was no monetary claim to be made, the greed issue would go away, the information would be shared, and millions of people could be saved. Glad millions didn’t die this time but what about next time.

mhab says:

A suprise to anyone?

Is anything stated in this article really a surprise to anyone anymore? If it wasn’t all about the money in modern medicine I’m sure we would have cured cancer a long time ago. Instead today we have big pharma pushing chemotherapy drugs that do way more harm than good to most patients and cost an arm and a leg (no pun intended here) to acquire.

Niall (profile) says:

Re: A suprise to anyone?

Try using some other cliche than the tired ‘could have cured cancer’ one. Cancer is a myriad ( 🙂 different illnesses, each of which need their own tests and cures. We’re not likely to cure all cancers for a very long time.

However, your core point is good – the twisted profiteering and monopoly blackmail in modern patenting is very broken, and leads to vast amounts of money creating the next viagra, rather than a cure for sleeping sickness or malaria or tuberculosis.

TDR says:

Re: Re: A suprise to anyone?

Actually, Niall, there is a way to beat any cancer, it’s just that since it’s not drug-based, big pharma can’t profit off of it, so they won’t allow it to be widely spread and thus cut off their cancer cash cow.

The body produces cancers all the time, but a healthy immune system kills them almost as soon as they form. Cancers and viruses cannot survive in an oxygen-rich, alkaline environment. The body has a pH level, and in cancer patients and others who are sick, it’s very much acidic. In fact, it’s often at least somewhat acidic in most people in developed countries because of the processed foods developed by amoral megacorps like Monsanto. They work with the pharma companies to deliberately make you need pharma’s services due to the unhealthy foods Monsanto and their ilk make.

As a result, most people have an acidic diet just by virtue of the food that’s made available for sale. Acidic meaning not what the food is like going in, but in how it reacts in the digestive system. However, their are foods and dietary plans that can help shift the body’s pH from acidic to alkaline. For example, organic baby spinach is very high in magnesium and is an excellent alkaline food. This is true of pretty much any organic, leafy green vegetable. Do a little research online and you can find whole charts of which foods produce an alkaline reaction and which ones are acidic, and plan your diet accordingly.

Bitter almonds (not the kind you see at grocery stores, but bitter ones) are illegal in the US because they’re one of the only natural sources of vitamin B17 (I think that’s the number, it’s a very high B vitamin) and are a known cancer-killer. It takes time and consistency, but with a steady, consistent alkaline diet and other natural treatments, cancer can be beaten without big pharma’s poison/slash/burn methods that kill far more people than they help.

The five-year survival rate of people who go through pharma’s traditional methods of treatment – chemo, radiation, etc. – is only 4%. That means that 96% of people who undergo these treatments die or will die within 5 years. One of the most well-known people who beat cancer without these treatments is Suzanne Somers, but there are many others who have done so as well. People don’t die from cancer. They die from big pharma’s treatments.

Also, the big cancer research foundations don’t want a cure to be found because that would destroy their very reason for existence, and their founders and execs make a lot of money. That money would go away if a cure was allowed to be spread. Pharma doesn’t want that either because then people wouldn’t have any need to pay for their expensive, overpriced treatments that are better killers than healers.

sue says:


Why is everyone firing off about myriad? I went to five different dr’s, informed all of them about my family history of overian and breast cancer and not one of them ordered or even offered me testing. physicians have to order this test. From what I understand they all know it’s out there but from my experience none of them would order it for me. I had to call myriad myself and talk to a genetic councilor who then helped me get tested through my reluctant physician. they even made sure they had someone in my dr’s office the day before I came in so that he did it correctly. My insurance paid for it 100%. without myriad though, I never would have known that such a dangerous mutation hid within my dna. I for one, am so thankful for those at myriad for saving my life and that of my family.
Also this is america, the medical field is not a charity. pharmaceutical companies and dna comanies like myriad invest to help save us. They put up big money and have to recoup their losses somehow. This test is not any more expensive than the mri’s that I now get regularly to save my life. So why are they taking the brunt of this. Shouldn’t some of this lay on the dr’s that ignored what I see as my symptomatic family history? I think so.

sue says:

Re: Re: physicians

Unreasonably? Do you realize how much it costs a hospital or office to buy a mri machine? they have to make the money back somehow. I assume you’ve used a plumber before or had your car fixed? Do we blame them for charging a couple hundred an hour? They have to make a living too. Myriad is doing the same thing that other business owners in america do, investing in technology that we need. Thank god they did. For it has saved my life and the life of my family. This isn’t a simple x ray. Look up all that they do and how they double check the test. My understanding is that the way they do it is very complex and very accurate. Because they have tested so many people like me, they are very accurate. I don’t want to go to some chop shop for life altering info such as this that may lead me to have major surgeries. I want the best test possible. And mine was free because I have the history. Perhaps all of you slamming myriad should have given your hard earned money to a local university so they could do all the research on the genes. as if that woould have happened.

Anonymous Coward says:

Re: Re: Re: physicians

I don’t know how much they pay for it in fact, but I do know that the prices are inflated beyond belief.

Hope people start developing their own in their homes like is happening with CT scanners.

Then you will see how much BS these companies are all about.

Anonymous Coward says:

Re: Re: Re: physicians

I don’t know for sure, and I’m not a betting person, but I would bet that a ton of prior research that Myriad used to develop their test was done by others, likely universities.

How lucky for you that your insurance pays for MRIs. I actually had breast cancer and I have to continually fight for an MRI scan instead of a mammogram – a cruel, painful, and, for me, ultimate failure of a testing methodology – my cancer wasn’t detectable via mammography, but was quite visible via ultrasound and MRI. So why do I have to fight for the better of the three methods?

Because mammogram machines are cheap and fit in a closet and have a faster ROI because they’re marketed to healthy women.

I’m glad you were able to get the testing you wanted and/or needed. It doesn’t excuse the complete monopoly pricing and availability enforced by Myriad using patent law.

Anonymous Coward says:

Re: Re: Re: physicians

I am guessing you love those taxists that drive you around the world before getting you to your destination or plumbers that change the whole plumbing to fix a leaking pipe.

Yes I blame greedy bastards for charging beyond reasonable, yes I blame greedy bastards for not caring, yes I blame greedy bastards for being what they are.

Surely is not me to blame for their faults and greed.

sue says:

Re: Re: physicians

I’m not paid a dime. I am however probably the only person on this chain that has had the test, has this horrible broken gene in my family and realizes that this testing was a blessing. Because of it I will live to see my familyy grow. I will live to fight for others and I will live to put all of this in perspective for you Tek’a. This isn’t about money. It’s about the suffering of very specific families and very aggressive cancers. A few years ago this information was not available and we lost multiple family members in tragic battles against cancer. Now I’m informed, my family is informed and I can take steps to save myself from that same tragic fate. You all can rant about this however much you want to, but I just feel sorry for you, because all of you are forgetting about people like me. Myriad has not. If they keep doing research andkeep creating better tests, I’ll keep paying. Because I am healthy enough to go to work. and the affordable care act covers this for those with high risks. just like me. if you think that’s pr, well i can do no more but pity you for being so short sighted.

Anonymous Coward says:

Re: Re: Re: physicians

What you seem not to realize is that there are many ways of doing things and granting a monopoly is not the only way things can get done, in fact is the tool of last resort when everything else failed then you grant such abominations.

You do know that only in the US those patents are valid right?

Did you know that Myriad’s CEO stated in public that they have other competitive advantages and that is why they are not worried in Europe?

Also according to Wikipedia the race to find BRAC1 was conducted globally it was not just Myriad that did it, UC Berkley started the ball and Myriad got there first together with the University, while others were also trying to find it, after Myriad got the patent all research on the subject stopped, nobody is researching that thing, meaning less eyeballs and less brain power is being expent on the pursuit of knowledge and you believe that is a God send blessing?

Niall (profile) says:

Re: Re:

Which is a criminal shame. More should be done across the world to diagnose, treat and prevent diseases that can be dealt with. However, more could be done to develop cheaper, faster and better diagnoses, treatments and preventions – and this is where poorly handled patents can gum up the works and evergreening needs pruned.

How about if instead of overall control of a patent, the patent holder could get a share of the profits of other companies making products based off their patent?

Maybe we could offer them a percentage of net 😉

special-interesting (profile) says:

This is a fascinating tech topic! Few times have the time delays in innovation and technological advancement and their consequences been so highlighted.

Of course the real issue is whether the fees charged were ‘reasonable and just’. $3000 for one test/medicine/diagnose does not seem like either. It sounds more like extortion from the sick and or vulnerable. Again we probably see the ugly ghost of Hollywood Accounting Principles. (HAP)

The high cost of medical care/medications/diagnostic-tests/etc have likely already caused way more than 100,000,000 deaths. It even likely that we could count them with a little research.

?Myriad’s monopoly has allowed it to set a high price for its tests — $3000 — and this is bound to have acted as a disincentive for those who were unable to afford such a sum.? Count these as dead victims from patent laws.

Its common everyday occurrence that the elderly/sick/poor die from seemingly simple things such as tooth decay as dental work costs a lot of money. Count these as dead victims from patent laws.

The costs of health care in the US is already at such an extent that many go without medications fro chronic medical conditions. Also count these as dead victims from patent laws.

This shows up most vividly in Cancer treatment. Few can afford the often 100,000 dollar per year treatments expense for drugs and irradiation. Count these as dead victims from patent laws.

The huge cost of an Magnetic Resonance Image (MRI) device is surely a result of patent costs. How many people die each year because at a basic level testing and imaging are the best ways to get an early diagnosis. Count these as dead victims from patent laws.

The cost of US health care is already so out of proportion to average world prices that medical tourism is normal for operations and major dental work. Just take a ‘vacation’ to Mexico or some south Caribbean Island (where a significant portion of US doctors are trained also because US based education is also way out of whack) and get that cancerous blob removed or bypass surgery.

Is it safe? Who knows and at the unreachable price US health care charges… Who cares? Or more likely; Who can afford to care. The ones who could not even afford this low cost alternative? Count these as dead victims from patent laws.

The claim that US health care is ‘the best’ in the world is mostly false. Like most boasting there will be some little part that is true but it surely is not the price-tag. This unofficial counting of the dead caused by patent law is almost surely way over 100 million already.


Yeah. The Constitution says a lot of good things and many of them were supposed to be inalienable. And. Two hundred years of special-interest-groups writing weasel worded law for an likely illiterate congress cancels almost all that out?

The middle ground in the cost of treatments/diagnostics might be found in enforcing Standard Accounting Methods upon the various drug manufactures. instead we have the likely Hollywood Accounting Procedures that don’t just count the cost of development of that treatment/diagnostic but a few hundred thousand kitchen sinks also. (remember that billions of $ are on the table and thats a lot of kitchen sinks including installation costs too!)

Its also normal that much of the research was not only done at public universities but actually sponsored and paid for by the public through grants and tax subsidies.

special-interesting (profile) says:

AC had a good statistic while I was writing the above essay.

“Ten million people die each year from diseases that have available cures.”

Since its possible that already a billion have died the title of this article might be better in line with reality by saying;
?How Long Before A Patent Kills A Few Billion People??

Trillion may be a bit much for now but maybe not if we have a pandemic or two or what about a real epidemic? Also the possibility of a bad global depression might change the employment rates of many a country not to mention the ratio of health care cost to available family resources. At the least ‘Trillions’ of deaths is not out of scope.

If patent holders treat the sick and vulnerable in the same way as copyright holders treat the highly handicapped Blind there will be no pity on the helpless. None.

Nicci Stevens says:

I get that companies need to monetize their investments after the fact. I do. Now tell me why psychiatric medication, that is patented, is sold with retail pricing of upwards of $800 a month. These medications are so over-prescribed that big pharma is raking in billions on them. These drugs are so profitable they are then re-approved for use in other conditions which then extends their patent.

Astra-Zenica has made $31BN since 2006 on just one drug – seroquel. It went from being considered a “powerful antipsychotic” to an anti-depressant. This change widens, significantly, the market for the drugs.

We do have to consider the class actions upheld against Astra-Zenica and other companies which have chipped a few billion away from their P&L. We should also consider, then, the ecosystem under which these “powerful” medications are actually approved.

A drug company does research and intentionally or accidentally finds a treatment for something (Viagra was an accident for example). They perform their own clinical trials and then take the data they are happy with and submit that to the FDA. This is an important distinction because AZ and other companies can choose to hide adverse effects from the FDA and the consumer.

In the case of Seroquel it was found that AZ knew the drug caused, among other things, hyperglycemia and diabetes. This was not submitted to the FDA and, until class actions were pursued, the FDA had no labeling requirements.

Additionally these drugs are marketed, not to patients, though we do see commercials for some on television and in print ads and other places, but, rather, to doctors. Often times these doctors do little else than write a prescription on their quarterly 15 minute visit.

Frequently these drugs are prescribed to treat a condition such as bioplar disorder or schizophrenia. The assessment for these illnesses is subjective reporting by the patient.

Because some doctors are given big incentives by the drug companies this is the extent of the diagnostics and the patient is sent away with expensive medication that is paid for by either insurance or medicare/medicaid. Either way that cost is passed along to you and me in the form of insurance premiums.

Frequently, the patient seeking help is diagnosed with a serious mental illness without any attempt to check for organic illness or injury.

A person can seek help for hearing voices, seeing things, erratic behavior, etc. Those symptoms can be for life-threatening illness other than schizophrenia or bipolar disorder. Because of the ecosystem under which doctors and pharma work the patient is not given any tests to check for tumors, lesions, previous head injury, infection, etc. They are merely sent on their way with expensive medication which most doctors will then tell them they must take for life.

Extending patents on drugs merely extends the influence the drug companies have on doctors. When a medication goes generic their is no longer incentive for a doctor to push for the brand name as most insurance will no longer pay for it.

In 2006-2006 a study was done by the National Institutes for Mental Health which compared effectiveness versus side effects of three drugs: Risperdal, Zyprexa and perphenazine. At the time the first two were under patent and expensive, Zyprexa being the most expensive. What this study determined is that the side-effects of these drugs had similar levels of tolerance. While some of the effects were different the overall side-effect tolerance was the same. Of the three drugs only the patented drugs were more likely to cause diabetes. The conclusion of the study was that first-generation drugs like perphenazine were as effective as the second-generation drugs like Risperdal and Zyprexa, had the same tolerance of side-effects but the first-generation drugs were much less expensive.

It is important to note that all of these drugs are very dangerous but often their benefits outweigh those dangers.

From gaining approval to marketing to prescribing their is a strong element of self-service by these companies. I understand that Astra-Zenica, Janssen, and even Patriot (a generic manufacturer) have profits to make. They have responsibilities to their stockholders. They also, by way of putting themselves up as drug companies, have a responsibility to their consumers. This responsibility has fallen flat, as has been proven time and again in courts.

One final, anecdotal note, when discussing with a biotech scientist at a large cancer drug company near Seattle, Washington, I found that the researchers are specifically told not produce cures, only treatments.

Say a cure might cost a patient $50,000. If it costs, over the patient’s life, even twice that for treatment, then the corporation’s responsibility to the stockholder is met by that treatment rather than producing a cure. The stockholder wins but the patient loses out.

This, to some extent, oversimplifies the issues and problems with drug production and marketing in the US and granted doesn’t take into account the long-term viability of companies who produce only cures. These companies do provide treatment where there might otherwise be none but there needs to be some changes in the way drugs are marketed to physicians and pressed onto patients. There also, as evidenced by way of multiple class actions, must be changes in the way drugs are approved where there is more objectivity and we simply do not let the fox guarding the henhouse make those decisions.

Like in other industries there needs to be medical patent reform. Companies do need to protect their bottom lines but not at the cost of patient welfare and not when their bottom lines so effect ours that the rest of our care becomes more expensive too.

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