The People's Perspective on Medicine

Would You Pay $475,000 for the New CAR-T Cancer Treatment?

How much is a life worth? Will new cancer treatments bankrupt the American health care system? CAR-T gene therapy is revolutionary, but can we afford it?

The hottest new cancer treatment is called CAR-T. It stands for chimeric antigen receptor (CAR) T-cell therapy. Many world class medical centers have gone all in on CAR-T cancer research. That’s because there is great hope that this new form of personalized immunotherapy could represent a dramatic improvement in hard-to-treat cancers. Is CAR-T worth almost half a million dollars?

ALL Treatment

Imagine for a moment that someone you loved was diagnosed with a deadly cancer called acute lymphoblastic leukemia (ALL). This is a blood cancer. The bone marrow churns out way too many immature white blood cells (lymphocytes). They are unable to do their job fighting infection. As more and more leukemia cells are produced, fewer healthy lymphocytes can be made. Symptoms include easy bruising, fever, joint pain, swollen lymph nodes, fatigue and weakness.

In the past, treatment for this kind of leukemia has involved potent chemotherapy drugs and powerful corticosteroids (dexamethasone or prednisone). There are additional drugs that sometimes help such as Gleevec (imatinib) or methotrexate. The cure rate for adults is usually around 40 percent.

If this kind of leukemia relapses the prognosis is not good. When children or young adults experience a return of ALL, their anticipated lifespan is measured in months, not years.

CAR-T for ALL: Is Kymriah Worth $475,000

What price do we put on a life? That seems to be the question the pharmaceutical industry is now asking. There is tremendous excitement about CAR-T because the early word on the street is that it could represent a cure for some people. This new cancer therapy is the first FDA-approved gene treatment for leukemia. Novartis has named its CAR-T treatment Kymriah.

This therapy involves harvesting T cells from the patient. These specialized immune cells are then modified to produce chimeric antigen receptors (CARs). The CAR-T cells are then allowed to multiply. When there are millions and millions of CAR-T cells they are infused back into the leukemia patient’s bloodstream where they are supposed to home in on the cancer cells and kill them. This sort of immunotherapy has many cancer researchers excited because they have seen results in some patients that have been nothing short of miraculous.

An Inside Story on Drug Prices:

Decades ago an executive at one of the country’s leading pharmaceutical companies confided to us that the industry was facing a crisis with regard to drug pricing. The first AIDs drugs were becoming available and companies were charging what seemed like outrageous prices.

The initial price tag for AZT in 1987 was $10,000 a year. That was considered shocking. AIDs activists and public health experts were up in arms. Civil disobedience protests over the price forced the company to lower the price to $8,000 a year.

The Impact of Push Back:

Our insider into drug company negotiations told us that he and other executives sat around a table in the 1980s and discussed pricing in general and cancer drug prices in particular. These pharma folks were taken aback by the public outcry over the price of AIDs drugs.

They admitted to themselves that if a company came up with a cure for cancer it would have to be very cautious about the price it charged. There was even a suggestion that the industry would have to give away such a miraculous medicine. Otherwise, the entire pharmaceutical industry might be tarnished. The rebellion over the cost of AIDS drugs suggested to these various executives that the public would not stand for price gouging. That was then.

Today, drug companies routinely charge anywhere from $100,000 to $150,000 for new immunotherapy cancer drugs. We suspect that the $475,000 price tag for Kymriah is a trial balloon. There are many other companies researching CAR-T therapies for other cancers. If Novartis can get away with charging nearly half a million dollars, then other companies are likely to see that as the new benchmark, too.

Can We Afford New Cancer Drugs Like CAR-T?

Even if someone has great insurance, there are collateral expenses associated with CAR-T. Patients often have to stay close to the medical center for weeks or months after they get their CAR-T infusion. That’s because side effects of this therapy can be life threatening.

The immune system sometimes goes wild. A massive release of chemicals called cytokines can trigger high fevers and very low blood pressure. Serious infections are another worrisome complication. Brain swelling can lead to seizures and other neurotoxicity. These adverse reactions are often treated with large doses of corticosteroids, which also carry significant side effects.

Insurance companies that agree to pay half a million dollars for CAR-T therapy will doubtless raise their premiums. Patients who do not get approval from their insurance companies will have to face a terrible dilemma: Beg or borrow hundreds of thousands of dollars or watch a loved one die. In our opinion, that is unconscionable.

What if There Were a Cure for Alzheimer’s Disease?

Most people have been touched by dementia. Have you watched helplessly as a friend or family member slowly descended into forgetfulness. What would you pay to keep that person out of a nursing home? What if we could keep that individual from disappearing down the rabbit hole entirely?

We suspect that the first truly effective medicine against Alzheimer’s disease might come with an unbearable price. The drug company would likely charge more than $100,000 a year. It would justify the cost on the grounds that nursing home care can cost almost that much, if not more.

Multiply $100,000 times 5 million people with Alzheimer’s disease. That comes to:

$500,000,000,000,000

That’s theoretical. But it is more money than any country could afford.

Now consider the cost of cancer drugs at $500,000 per treatment. How long can we sustain a health care system with prices like that? We suspect that the entire system will implode within a few years if we do not get costs under control. Breakthrough drugs like CAR-T are great…if they are affordable. If our entire health care system sinks under the weight of such advances, we’re all in trouble.

What Do You Think?

We would love to hear from you. Are new cancer treatments worth hundreds of thousands of dollars? We all want new and better cancer therapies. Can we afford them? Share your thoughts in the comment section below.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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I know 3 people – including myself. who are on immunotherapy for advanced cancers. It works. The drug companies pay for it through patient assistance programs. Insurance will not pay unless you are on the short list of cancers for which immunotherapy drugs are approved. Chemotherapy does not work and is horrible on the patient.

Immunotherapy saves lives. Without it we would be dead.
So, we have found a way, but as my oncologist says
“Prices have to come down for immunotherapy drugs to be used more.”
I hope this is helpful.

I agree with many of the previous comments, however, as a grateful recipient of free drug treatment with Imbruvica from Johnson & Johnson which would normally cost over $100,000.00 per year I believe all the rage.

Against all the pharmaceuticals is unfounded. That is not to say there are no unscrupulous companies who take advantage of their position. I’m sure everyone is aware of the costs and many years of developing, testing and bringing a new drug to market at little or no cost to taxpayers.

Sounds like the government is purposely “thinning the herd.” They allow poisons into our food, and turn a blind eye to the unhealthy way our meat, chicken and fish is raised and prepared for sale. Unhealthy items are allowed into the country from China. And now they produce medicine that only the Uber rich can afford. Big Food and Big Pharma are the people running this country. After reading this article, I will never give another penny to medical research. They already get my tax dollars. As someone else mentioned up-thread, we generously donate money to fund research for killer diseases only to find out that we cannot afford the drugs when our or a family loved one needs it. Like others, I have no plans to extend my life when death comes a knocking. I carry a DNR card.

$475,000 for a possible extension of life is not a cure, it’s a money scam, being proposed by an unscrupulous company.

The health care system in this country needs reform from the ground up. The health insurance system creates bizarre arrangements where the price of care and medications seems to be based on what the pharmaceutical companies, among others, think they can get away with. The insurance companies themselves add no tangible value to health care – they are profit-driven middle men. Those who have insurance may receive outrageously expensive care that improves quality or length of life very little, if any.

Meanwhile, some of those with no insurance can’t even afford basic care to prevent illness. The pharmaceutical companies advertise relentlessly on television to encourage patients to request the latest expensive medications – avoiding honest disclosure of how much patients are actually likely to be helped. Some physicians are also guilty of pushing patients to accept medications and other treatments that are dubious in benefit but will make the physician richer.

To make matters even worse, throw in the lawyers who rake in the money suing anyone they can. There is no reason this rich country can’t figure how to bring sanity into this health-care nightmare – but too many politicians on both sides are more concerned with whipping up animosity to increase personal power than cooperating to fix this shameful mess.

The solutions aren’t easy, but there has to be a way to make it fair to everyone, including drug companies and medical care providers – unfortunately there are too many special interests who care nothing about fairness and reason.

CHemo treatments average $500,000 per treatment plan, it’s just spread out & it doesn’t cure the disease. CAR-T Is a cure so in the long run a cheaper option.

I hope Trump drains the swamp in government and in drug companies.

Much of the background science for this kind of treatment was done with government grants through the NIH. The contribution of the government should be taken into account when the pharmaceutical company sets prices- perhaps they should have to repay the government grants.

Well yes, it’s all about dollars and cents, of course. That doesn’t mean that the conventional cancer treatments are cost-free – or offer a large chance of cure, in most cases. There may not be such a huge gap in sheer money terms. Though of course the cancer business is a gigantic part of our national economy, which is another way of thinking about it in dollar terms.

For myself, never spend that much on cancer treatment. For my son, would be more than all I own, so no from this family.

I would like to see the breakdown of the sales and profit margin on the cancer drug. And drug companies don’t let us see this information. Since the drug companies use a formula based on what they think they can get away with instead of a fair profit based on the costs of the drug, we could then see that the drug is significantly overpriced. Shame on the drug companies (as usual); they are what’s wrong with our health system. And don’t even get me started on their salaries.

The drug companies have a sweet racket. The government funds and develops the drugs, then they turn it over to private companies to gouge the public.

The outrageous prices of such drugs is, simply, the CRUELEST AND MOST VICIOUS FORM OF BLACKMAIL ever foisted on humans. For humans already down and suffering, it kicks them in the gut, saying: “We just put a big pricetag on your life. What, you can’t pay it? Fine, then you die. Bye!” Of all the freakin insults. Who the hell is stupid enough to believe they are just recouping costs? I’ve got a bridge to sell them.

I think this is outrageous. I am ashamed to live in a country that would let people die because they cannot afford those ridiculous prices. The drug companies, especially with all the stock they sell are looking for money not saving lives.

To be honest with all of you. I have come to think that yes, all of the these so called drug makers do want to see that happened. Just to see patients died. They feel one less person to not worry about.

What I don’t understand is why can’t these companies look at the success of Walmart and see the logic in Walmart’s philosophy of doing business – lower prices increases volume of sales. Say, if only 10 people can afford $475,000, maybe 1000 could afford $475!!! More people helped, same amount of money made. I realize that is a slight oversimplification and there is more to it than that, but the principle is sound and could be applied in a logical manner to the pharmaceutical industry.

Do we know what the actual cost of producing the drug was/is and what the estimated return on the investment to the company at this price level would be???

The federal government needs to change the laws to ensure that there is competition in all health-related businesses. If that occurs, and the price is still $475,000 it is a fair price, and we all have to decide just what our life, or the lives of loved ones, is worth. The tooth fairy does not pay for everything that we need in life. We have a government which is going ever more deeply in debt paying for things that some or all of us believe we need. There is greed amongst us, and it is called the profit motive. Businesses work very hard to be the most efficient in order to beat the competition. Winning this race is is called success. The appropriate role of our government is to ensure that competition is alive and well so that the selling price reflects the lowest price at which a company is able to produce the product and yield a profit which enables it to stay in business and develop more and better products.

Remove the expensive TV ADDS. Money saved could help reduce costs.

I just watched a wonderful TV series about advanced treatments being developed at the NIH, which included treatment with CAR T cell therapy. What wasn’t mentioned in the series, was the posible release of the treatments they’re developing to corporate interests, outside the NIH. If the NIH, a government agency, is developing CAR T protocols for treatment, do the money grubbing pharmaceutical companies get to take that research and then co-opt it themselves, turning the research into their own cash cows as desperate cancer sufferers must pay for the treatments?

Could you please tell me what the name of the TV series you watched (and mentioned in a comments on a recent People’s Pharmacy weekly newsletter) about advanced treatments that are being developed at the NIH is? On Netflix, Amazon or where? Thank you!

We tend to regard announcement such as this with great hope. At the same time, please tell me the
*real* benefits of the statin drugs. The above mentioned drug is brought to you by the same folks.
They will and have done *anything* to part you from your money.
Sad to say, I was once a naive research scientist……

What did we do five years ago? When our time came, we died. But we still on average lived much longer than Americans 200 years ago. A large part of the increased cost of medical care is because people are living longer than ever before. I am 80, and I still think we may be working too hard keeping people alive. Death is inevitable. Maybe we should just relax a little and let it come, rather than spending millions for a couple more years. In a nursing home. Contributing very little to anyone. Several people I know have asked why they were still here — their useful time was up, and they wanted to leave.

Of course the drug companies’ prices are too high. Of course only the super rich can afford the out-of-pocket costs, and of course thr health care system will never have enough money to pay for this cancer drug or all the other drugs that we need to treat alzheimers, autism, autoimmune disorders, diabetes, heart disease etc.

How about we take a look at the reasons that we have a need for all these drugs? How about the numbers of meds folks are taking just because they are “covered”. How about the poisons in our foods and our environment ? How about the lack of personal responsibility i.e. Smoking, poor eating habits , lack of exercise? Let’s examine the roles played by big pharma, big agribusiness, big fertilizer companies , the FDA and the interaction among all these entities. Nuff said.

In January I was diagnosed with stage three cancer. Half way through treatment I was so depressed and having severe neuropathy.. I could no longer walk without aid. I decided quality was better than quantity of life. I stopped treatment.
I’m receiving acupuncture and Chinese herbal treatment. I feel wonderful and walking unaided.
We need to look outside the United States for cancer treatment.

There are many tens of thousands of people turning to alternative cancer therapies that have worked for many years. Ty Bolinger has produced a series of streamed documentary episodes that have been aired for free, called The Truth About Cancer, in which he interviews dozens of experts, oncologists, naturopaths, health experts on other choices and lifestyles. I am floored how many continue to take the terrified stance that there is no choice and we are all held hostage by Big Pharma!

My understanding from reading many other opinions on the cost of drugs is that research and development costs are a very small percentage of pharmaceutical budgets. Marketing is a much higher percentage. For a drug that expensive, $475k, it should still be in the trials stage, it seems to me.

I would turn the opportunity to “live longer” down. I don’t want myself or anyone spending the bank or their inheritance to extend my life beyond what I already have. Of course, I am not a parent of a sick kiddo, the target demographic for this drug. It would help if our culture could recognize a time to “let go” instead of “fighting a valiant fight ” mentioned in too many obits and stories in the press.

Would I pay that kind of money for the ‘iffy’ treatment? No, I’d die first. Different story if it was my child though.

Corporate greed is literally killing us all. The public can and should fund medical research, and the fruits of this research should be provided at minimal profit margins back to the public.

I had seen who must have been a higher-up for Novartis on TV saying that the price would only be applied if the CAR-T worked for the patient. Nice – if you live and are not rich and/or have insurance that properly balks at such a price – then you are in hock for half a million. Whenever I speak with my European friends, they cannot fathom our healthcare system and are appalled at what they read and hear about it. So am I.

This is all very interesting and disappointing. BUT… in reading the side effects of CAR-T, is it really any better than chemo and radiation? Our medical care system as a whole is failing us miserably. It seems that, with the incredible intelligence and experience that is available, there should be an ability to find a way to help us maintain our health. However, it is obvious that the power of the almighty dollar is creating a monster. Sad state of affairs.

In his 1981 forward to Upton Sinclair’s “The Jungle”, Professor Morris Dickstein (of New York City) used the phrase “unbridled economic savagery”. That’s exactly what we’re seeing here, with Novartis wondering whether they can get away with this abomination. In the currently hyper-materialistic USA, they just might. That would be very good for the CEO of Novartis, and for those who own that stock, but very bad for everyone else.

I can add no more to what’s been said above, except to say that Big Pharma executives will burn in hell for their greed.

A typical sad scenario in the medical treatment scenario. All health care institutions and health care providers vehemently claim that they have the patients’ best interests at heart, but the truth is, very few do. What they have at heart is how much they can charge for their products and services. And, the legal industry also has to take some blame in this scenario, for their past and current practices of encouraging lawsuits at every turn of the process. No, this therapy is NOT worth $475 K, and we as patients need to refuse to accept such ransom for our lives. I also do not like more government regulation, but until we can get big Pharma under control, as far as exorbitant costs are concerned, we have no hope of controlling costs for medical care and health insurance costs in our country. I worked as a health care professional for almost 4 decade and became more and more disillusioned with the whole system. I saw the quality of care and cures become more widely available, but the costs become prohibitive for access of that care.

What about all the money we, the American public, have been raising and donating for years and years for cancer research. Without us and our generosity this “breakthrough” might not have occurred. They act like they funded this research and are entitled to the half a million per dose. I say we the American people should be given credit for making the funds available for research and should benefit as such and not to the tune of a half a billion dollars a treatment. Maybe this is a wake-up call and we should stop giving to research.

I agree with Joseph and Phil. Profits should be fair and just. Unfortunately, under our present system, it’s all about the money. It we’re to follow our Constitution’s priority to “promote the general welfare,” we have to move to a private-public partnership in the realm of drug research and distribution, with the balanced goal of reasonable sustainability and and affordable availability for all, rather than obscene profits and cadillac care for the few.

There is no sense in developing drugs or procedures if the cost is beyond the ability to pay for them. A lesson might compare what Ford did when the cost of his Model T was beyond the reach of his employees. He increased their wages shortened the work week so they could afford to buy his cars and have the time to drive them.
Saving the life of a loved one is way beyond driving a car but, since many of the costs of developing drugs etc are funded by the gov’t thru grants etc then I guess we all need to share the costs of development.

Aren’t these procedures already taking place under the NIH in Bethesda Maryland?

It seems that these drug companies are getting a free ride when all the major work has already been done.

Someone needs to get the greedy drug and insurance companies under control. It is a sad state of affairs when the richest country in the world lets people die because they can’t afford life saving medicine, or even health care in general.

SImply put, a price tag of $475,000 is obscene. We need a uniform method for ascertaining the true cost of developing a new drug, producing the drug, and monitoring and responding to the unanticipated side effects. How much of that expense was born by the drug company (and what portion of the research was at a university or NIH?) A commercial enterprise such as a pharmaceutical company needs further income to cover administration, salaries and profit… at a reasonable level.
A trial balloon is not an acceptable way of assigning price (becomes a metaphor for ‘the sky’s the limit.)

This is the breakthrough we have all hoped would happen in our lifetimes! But, if it is only available to those few people who can afford it out of their own pocket, it is going to unfairly benefit them or make everyone else broke. I am guessing this isn’t an orphan disease and demands a higher cost because it isn’t going to be widely needed? You didn’t mention in the article what the current cost of AIDS drugs is. Has that become more affordable after 30 years? These prices cannot be sustained. Its like dangling a carrot for only a chosen few. And a patient’s financial portfolio will determine if they get to live or die. Something must change.

Drug companies have a right to recover their development costs of these breakthrough drugs, but after those costs are recovered, then the prices should only reflect a reasonable profit amount.

I agree that drug companies have a right to recover THEIR development costs. However, they could make an ethical decision to spread that recovery over a long enough time to make the drugs affordable to the people who need them.

The ultimate dilemma in the aforementioned article is: do I pay $475,000 to possibly (possibly being the operative word) save my life at the expense of bankruptcy and personal financial ruin and all it’s ugly ramifications, OR, do I forego treatment and let myself expire to save my family from financial disaster. Personallly, I will opt for the latter. I can’t stand the thought that some multi-billion dollar company is going to take everything I’ve worked my whole life to achieve and force extreme hardship on my family just so they can make a neat profit and satisfy their shareholders. Only the one percenters can afford such exorbitant prices without financial devastation.

In the 60s we eradicated diseases as a country. Every single person was given a vaccine for smallpox, measles, polio, mumps, etc. FREE of charge. We were PROUD of our advancements as a nation and as a SPECIES. And we had money left over to go to the MOON. It was considered a giant leap for mankind. Nobody was in it for massive profits. People got paid their salaries. And that’s all it took. We need to go back to THAT. These drug companies are using OUR TAX DOLLARS for their research! Then claiming they need to patent and gouge to recoup THOSE costs!! Insanity!

Guess millions would die, unless they’re rich.

In the 60s we eradicated diseases. Could you tell everyone what modern medicine has eradicated? It certainly has not been mental illness.

Extremely high drug costs do not represent a true “cure” for cancer (or Alzheimer’s disease) but a step in the direction towards a cure. If a drug is unaffordable because of its production costs to the average person, it is not a cure but an experiment.

What are the actual costs of the research, production and the total process of getting this, or any, drug ready for market? If it costs Novarta $425,000 plus (a hypothetical figure) for Kymriah, then $475,000 does not seem unreasonable as a price and just like buying anything else, we weigh the cost versus the perceived benefit. Your conclusion, “If our entire health care system sinks under the weight of such advances, we’re all in trouble.” is valid. Why should everyone suffer significantly to benefit so few—I know, that sounds harsh, but look at it as your loved one will not get the drug and care because there were dozens ahead of her that crashed the system making the care unavailable.

I hate government regulations, however, if the markup is so far beyond what is reasonable, then someone, or some thing with more authority than I have needs to step in.

It would cost a lot more than that. There’s labor intensive work at the beginning before it’s infused back into the patient’s bloodstream. This labor is done by doctors and who knows who else, such as the person who draws the blood and the one who infuses it back. These people will all have to be paid, and other hospital charges may be involved. Then, the side effects will require more care, possibly in-patient in the hospital. Ka-ching!

I think it is outrageous, only the very wealthy can afford this sort of price. It will be culling in its harshest rate. Poorer people will be beggaring themselves for the rest of their lives so what sort of life will they be able to have. I am disgusted.

My thoughts on the pricing of drugs by the industry are: what is the actual bottom line cost of producing the drug and what kind of profit should be allowed on what would be a life saving drug. I think price gouging is rampant in the pharmaceutical industry and maybe government should step in to rein in this industry. People’s lives should not be measured against profit of others.

It is sad that in the US we have no national health care system that would help control costs. I am a healthcare provider. Drugs have many side effects that also require treatment and costs. I think the better question is what is not life saving but quality of life. only each person can answer that. Not religion or politics. There is nothing wrong with dying as opposed to a miserable life that is all consuming of resources.

The pharmaceutical companies buy our congressmen and women so they can set these exorbinate prices. The real rub is that we keep donating money for a cure and they use our money and on top of that our tax dollars to do their research and then still overcharge us kindly citizens. Where is our outrage? Why aren’t one million people marching on the capital demanding honesty and integrity from our so called lawmakers? This is outrageous to say the least.

Regarding the new cancer treatment: Another article I read said the patients would still have to undergo chemo treatments and pay for lodging, meals and transportation near the center where the new treatment is given. Another drug company developing this type of treatment has given up the treatment because of deaths of study participants. None of the articles I have read has said if only one treatment is necessary or if multiple treatments will be needed over a period of time if the person survives the initial treatment with quality of life and the person has $475,000 times the number of treatments. This is another example of drug companies gouging the public. It is a shame that our health is quickly coming down to what we can afford to pay for – not what we need to maintain our quality of life. The drug companies obviously do not care about “First do no harm”.

But WHY do they cost so much? If it’s preying on people’s desperation, that’s wrong. If it’s to earn back the costs of R &D, surely that’s a continual cost of doing business that would be part of their operating budget OR at least the cost would go down steadily as more was sold. The temptation is to think of drug companies as altruistic entities because they deal in a product for healing, but rather they are in business to make money and usually have stockholders to please.

When one family member uses up huge amounts of the family’s resources for his own condition, it probably means that the other family members will be impoverished somewhat, possibly without the funds needed to treat their own conditions which will inevitably arise as the years go by. I think we ought to resist the temptation to use medication that is this expensive unless we are immensely rich or single or widowed and with no children or grandchildren at all to consider.

Sadly, drug pricing has advanced a long way beyond what is “fair” for all involved. With astronomical developmental costs, huge salaries and bonuses to be paid, it has come down to how much can be charged to recoup costs, and then start making profit dollars. There are also large costs involved with the large brokerage houses that can come up with the money for development and testing, and finally approvals for new drugs.

Everything is about dollars and cents. After years trying to get that one drug going successfully, how many fail?

Lastly, a winner can make your entire company appear to be a good buy! Elevates salaries, bonuses, stock options and desirability! Don’t forget also that the FDA granting a patent only lasts for about 17 years. After that, all hell can break loose! As I said, it’s all about the money!

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