I have IVIG every four weeks, since 2013, and will for the rest of my life. It is crucial to my health because I have a profound Immune Deficiency.
EACH IVIG treatment is billed at $18,000, just for the IgG alone.
How do I manage? I'm on Medicare and have a Supplement that pays EVERYTHING that Medicare doesn't cover. So I pay nothing. I am grateful, but I know that this is NOT FAIR.
No other affluent western society subjects its citizens to the outrageous costs of medical care that we experience in the US.
I have spent my entire life advocating and working for universal health care. Only by protecting our citizens' health, providing them with education at every level, (in France even medical school is free!) insuring a decent income in safe and human jobs, will we be truly civilized.
On another note, many drug manufacturers have programs to lower the cost significantly of these very expensive drugs for those who cannot afford them.
2
It's not even just cancer treatment that is rendering people disabled and broke. It's any illness at anytime. Injured and sick people become disabled, either acutely or chronically. Disability affects the ability to work and receive income. Disabled people have more expenses by virtue of being disabled. Which means they have less money to put back into the economy.
It's a devastating cycle that will only change with universal, free healthcare.
6
And to think of all of the money being poured into Covid treatments for those who refuse to be vaccinated. And I have to pay for that.
"The US has best healthcare system in the world." Oh yeah.
6
If I faced a catastrophically expensive accident or disease, I (like many others) couldn’t pay for it by selling my house. Rent is so high that if I sold my 4 bedroom 3000 square foot house, I could rent a 900 square foot 2 bedroom apartment in a sketchy neighborhood and the rent would be $500 a month more than my mortgage.
3
My sister in the UK currently has cancer. Her biggest expense is the occasional parking fee.
She was seen by her GP the day she called about an unusual symptom. She had a biopsy at a specialist’s office within 2 weeks. A month later the NHS gave her a room in a hospital hostel the night before her surgery, just so that she wouldn’t have to stress about getting there early in the morning.
Now that she’s started chemo, the NHS will even pay half the cost of a wig.
Americans have been sold a bill of goods. An insurance executive even admitted that the company spread misinformation to Americans so the wouldn’t trust universal healthcare.
When are we going to wise up?
19
What's troubling me most about the comments I've read is a lack of anger than the US continues to resist national healthcare. What is it about Americans that we think it's okay that people go bankrupt if they can't afford the treatment they need?
17
@lee I, too, cannot understand the resistance to national healthcare when so many people re affected by its lack!
8
Because right wingers believe we must defend against the evils of socialism at any cost. Until, of course, it happens to them — then they see the light.
6
Can you imagine that in past generations, certain gifted people pursued their aspirations to make medical discoveries largely for altruisic and other intrinsic rewards? Common sense in America is that only colossal profits will motivate innovation, but it really depends on what one considers to be a meaningful life, and we are seeing the limits of wealth in determining happiness.
4
A very close family member takes Stelara for inflammatory bowel disease. It is $23,000 per dose--that's the discounted price to the insurance company. Otherwise it would be 30K. Was taking it 1X every 4 weeks, insurance refused renewal at that frequency, now it's 1X every 8 weeks. I fully expect it to be denied altogether at some point. We'd love to trade places with these Canadian "truckers" who hate their government. I'll trade my freedom to get sick and suffer from lack of health care for your freedom to not die for lack of health care ANYTIME. Come on down!
14
@Man Ray People in Canada are still dying from lack of health care. The demand is far greater than the system can support.
"Managing" cancer is big, big business. Avoiding cancer in the first place through diet and lifestyle pays the doctors and the hospitals and the insurance companies and the pharmaceutical industry nothing.
Given these two realities, guess who wins? Hint: Not you.
PS: For all you who love to think, "It's all due to my genetics" while you chow down your tenth cheeseburger for the week, I leave you with this thought: "Genetics loads the gun, lifestyle pulls the trigger."
Stop pulling the trigger.
6
My sister in law was very health and diet conscious and exercised all the time and still contracted metastasized lung cancer. Let's stop blaming the patients for contracting cancer. If we shut down Monsanto and ban all its poisonous products, that might be our best cancer prevention technique.
11
@Greg Gerner This is one of the most disgusting comments I have read in a long time. I suppose your diet and exercise plan is perfect and guarantees you will never be sick, right? That being said, as a Stage 4 cancer patient myself, I see that people are making the choice to bankrupt themselves for treatments that may or may not prolong their life. No one wants to die, but unfortunately death comes for us all eventually. The way our American culture views disease and death are the real problem. It is a cash cow for unscrupulous companies, the fault of the sick person in the eyes of many, and viewed as something that can be eradicated with enough money in the eyes of many sick people. It’s so much easier to blame people rather than examining (changing?) our culture and our belief systems. I can’t choose anyone else’s path, but my choice is to focus on quality of life rather than quantity. I wish all the luck in the world to those who choose differently, and I can only hope that people like yourself can one day find some compassion in their soul.
5
Cancer isn’t the only medical issue that can bankrupt and or kill you. Forced into disability, then stuck with the Medicare donut hole already in February, early sixties, earning power non-existent, savings depleted, I don’t have any idea now how I will survive past maybe seven more years as there won’t be enough money. Drug prices are the reason. The stress of this situation may kill me before I run out of money. No one on this Earth today should have to make a choice like this. No one.
20
I wish that every Congressperson could read your post and understand the implications and the lessons that can be drawn from your experience.  I have no prayers to offer but my thoughts are with you nonetheless.
1
If the Legislative Branch thinks universal health care is wrong for America, then they should give up their health care for the good of America.
20
Ah, youth in Asia. When I can no longer stand, I will call for the youth in Asia to stand for me.
2
Just remember to save that last chapter 7 for when you need it at the end. In America it's okay to die penniless just not owing anyone except the insurance companies.
2
The pharmaceutical industry lobbying organization PhRma should adopt the slogan "Your money or your life" as it's motto
11
Precisely this. This is the essential problem with our healthcare. It makes for a hopeless population. Work double shifts for six months to save up funds, break your arm and it’s all gone. Save for a lifetime, your kid gets cancer and it is gone. This causes dysfunction way beyond healthcare.
That, and we all need help learning to live with death.
17
Just another example of our de facto criminal health care system, an aberration re out peer countries.
Biden, forego obsession about the Ukraine and putting a Black female on the SCOTUS. They will only help insure your defeat.
Improve ACA to where it becomes more of a national, affordable, quality health plan like the rest of our peer countries. This will all but insure your re election.
11
Were it not for the excellent health insurance provided through my spouse's job, I would be bankrupt now. But were it not for the miraculous treatment I received for my disease, I would be dead. If I were just slightly less lucky, I would have had to choose between financial ruin and (at the time of the choice) possible survival, or certain death. What a country we live in!
19
I had the NHS when I lived in England. When something really bad happened, it was stressful enough without the additional stress of how to pay for it.
People talk about the ACA, but most of the policies have high deductibles. The average is over $4,000. 40% of Americans don't have $400 in the bank, not to mention $4K. And, if you have the misfortune to have your medical problem in late December and continue into January, you get whacked with a second deductible.
10
@SAO I too used to live in the UK and had some major health issues, as well as having a baby. Not once did I ever have to even consider the costs of the treatment, etc.. Since moving to the US, I have had several surgeries and another baby and I have not got used to the ridiculously expensive system over here, and with the way that the insurance companies fight every way possible to avoid paying. And, I am told that my employer-provided health insurance is considerably better than what is the norm in the US.
The sooner that the US gets "with it", like the rest of the industrialized world, and introduces single payer/nationalized healthcare, the better for everyone.
11
@SAO
The NHS postpones or delays many necessary treatments. For a progressive disease like cancer, this may be fatal.
Covid has been a struggle and there is the occasional horror story, but see my comment above about my sister’s experience with cancer under the NHS—right now, with Covid still rampant. Her husband also had cancer a while back; his treatment was exemplary.
Don’t fall for insurance company misinformation.
7
A disease or medical condition can wreak havoc on a job. There are symptoms and side effects that must be explained away to coworkers and supervisors.
8
@Typewriter 12345 if your employer believes you
1
People with chronic diseases have this thing called the (name of disease) tax. So, if you have a disease and cannot work, you actually end up paying more for things and services. If I buy a product and it is defective or, simply does not fit me, and then cannot move for a month if my disease is flaring up, I am STUCK with that product. I have shoes, other cloths, appliances, you name it that, I would have returned had I not had a flair up. I also pay for fees and taxes on things I need that I barely use. I only drive about 1000 miles a year. But I pay just as much in fees and taxes as a person who drives 100,000+ miles a year! The disease tax goes on and on. More trips to the doctor than any average person and the disease tax to do that (but NEVER enough to meet the insane $7000 a year before you can deduct for medical expenses on your taxes).
In the state of Maryland, sick people do not get any breaks from the state, except those on Medicaid (but even that comes with many qualifiers). I pay a large state and county tax based on money I pull from my savings to live. The tax on my home does not factor in my never increasing income from my savings as my home's value skyrockets. (I already live in a small home. Any smaller and it would be a shack.)
9
@Alphonse Sanchez Yes, yes, and yes. I would love to see NYT do an article on this. (Happy to be contacted.) When I was able, I was a hard-working, extremely frugal person. Now that I'm much sicker, I am dependent on a "luxury lifestyle"—laundry and grocery delivery, help housecleaning, drive everywhere in a nicer car, paying a premium for additive-free organic whole foods I won't react (as much) to. All while on rental assistance, applying for food stamps, going to the "poor people" dentist and asking for hospital bill forgiveness.
I sort of understand why we get the stigma of "welfare queens." It all looks very schway on the surface. I am in agony and despair—none of this is for "comfort" or "convenience." I am trying to survive with one-one-hundredth of the capacity of a healthier human.
12
I agree that the term non compliant is offensive. It fails to recognize a patient's right to decide what care they feel they want. I now chart declined rather than refused when a patient doesn't take a medication; and document if the patient admits financial reasons for not being able to continue their medical regime. Whether chemo or insulin pumps, wealth certainly buys better health care these days.
17
@Linda
Sometimes it's cost (although some patients choose luxuries like eating out, new clothes and vacations over medicine). Sometimes it's irresponsibility---cannot make the medical regimen part of their lives.
1
I heard a politician on NPR this morning saying he'd prefer to give people money to buy their own health insurance. I stopped listening to him right there, because he clearly does not understand the pernicious nature of health insurance - when you really need it, it's not there.
We need to extend ObamaCare to everyone not covered by Medicare and Medicaid. We need to pool all our resources to help everyone stay alive and stay healthy. The private health insurance marketplace is toxic and not fit for purpose.
22
Wow...my experience has been just the opposite. As someone with multiple myeloma where my maintenance chemotherapy runs about $23,000 a month, I have gotten assistance from Celgene, then Bristol Myers Squibb, and finally the Leukemia and Lymphoma Society to pay for my medication. I was certainly not destitute financially when I applied for this co-pay assistance.
In addition Big Pharma practically funds about 10 blood cancer organizations that help patients with financial assistance. Not only do these programs pay for medications but also treatment costs, health insurance deductibles and co-pays, and even some travel expenses. I encourage any person with a blood cancer to speak to their treatment team or social worker to find out more about these organizations. These organizations will help you whether you have private insurance or Medicare.
8
@Kate A. So heartening to hear.
To me this illustrates the difference between a researched, funded disease and an underfunded, underresearched one.
I suffer ME/CFS and fight for drugs to help manage my condition. I've applied and gratefully received one chronic-illness grant...but there are very few organizations set up for us, by big pharma or anything else.
My hope is the uptick in similar Long Covid cases leads to our disease being understood and accepted as well as cancer.
5
Co-pay assistance is only for people with insurance, so the drug makers can squeeze the insurance companies. No insurance? Go hang.
5
You don't have to have cancer to end up in penury from illness. Long term illness and multiple surgeries due to a mosquito bite that gave me encephalitis did it for me. While the drugs and treatments were affordable, not being able to work and also not knowing the long-term prognosis reduced me to poverty after a very successful consulting career. Little by little, over ten years I went through my savings, retirement plans and assets in order to sustain a reasonable life and the therapies I continue to need. The only thing that saved me was finally qualifying for Social Security, which I took early. Because of my high earnings, I have a somewhat high benefit. Not middle class, but not poverty either. I was very generous while I made money, but don't regret it. However, I think of all the money not being donated to charities that help people much worse off than me, as in this article. A minimum tax would probably fund a reasonable life for everyone. If only the rich takers (like Joe Manchin, would give a little, of money but also empathy.
25
@Believe in balance I'm a consultant on year 6 of a similar non-cancer illness battle. I'm on the precipice of going for social security too. Late thirties. Terrified of how I will ever earn enough to fund a life, let alone a retirement. My understanding is that even the most high-earning individual's SSDI benefit maxes out at $2400/mo, but I could be wrong. A simple 1b apartment where I live is $1800/mo.
The hardest part is, earning caps will prevent me from being able to capitalize on lucrative short-term work opportunities where I can earn, rest, and recover. Why are disabled people capped from occasional bursts of income that can help them be less reliant? Nothing about the disability system makes sense for the ill, especially with a fluctuating case.
6
It should be noted that the more expensive drugs mentioned in the article are not available via public healthcare in Canada or the UK. I had an uncle who travelled from Canada to the US to receive the most prominent emerging treatments of the time via signing-up for studies and the like.
3
When I was very ill some decades ago, I was allowed to import non-FDA approved drugs (which were later approved) from Canada, and pay for them, but it wasn't cheap. It wasn't outrageously expensive, either.
"American has the greatest health care system in the world."
A. We have no such system.
B. What we do have is not the greatest anything. Entire populations of many other nations are healthier, happier, and more financially secure than the population here.
Once we move past the giant lie stated in my quote above, then, maybe then, we can start working on something that works nicely for all of us. There's no need to reinvent the wheel here.
43
@LarryAt27N
Larry, thank you for stating this so succcinctly. I am insured in both the US and France. When I was diagnosed with stage 3 cancer, I hopped on a plane and had all my treatment in France. Cost: 0, except for the plane fare. I had excellent care from excellent doctors and other medical staff. Very caring. And they cured me!
I cannot believe how blind many Americans are to the awfulness of our medical system. In France, even the homeless are given the same excellent care as everyone else.
21
Only in America… Hey, are we GREAT, or what?!
10
Thank you for this article.
I have argued that one way (other than lowering costs) to address the problem is to ensure that patients are better apprised of the costs and options.
"Informed Consent and the Oncologist: Legal Duties to Discuss Costs of Treatment"
http://www.ascopost.com/issues/november-25-2017/informed-consent-and-the-oncologist-legal-duties-to-discuss-costs-of-treatment/
6
@Thaddeus Mason Pope. You mean so that people can decide that it's better to just die right away than to take a treatment that would extend their lives but force them into bankruptcy? Not thinking that's actually a solution.
11
I was diagnosed with Stage III Inflammatory Breast Carcinoma (very rare, very aggressive; it only comes in Stages III and IV) a little over eight years ago. It has progressed steadily over that time, metastasizing to bones, brain, and liver. I'm single, but I have some wonderful friends who help me in many ways.
Cancer is an expensive hobby; despite having health insurance through my work, I've had to sell numerous items, from a hand-crafted guitar to plots in a (fortunately popular) historic cemetery in order to pay my bills. I'm just lucky that I had them to sell.
I'm still working enough hours to maintain my health insurance through my employer; I could go on Medicare, but some of my meds have been so expensive, costing thousands of dollars per month, that it's worth the hassles of arguing with the insurance company. The infamous Medicare "doughnut hole" has some of my friends in severe financial difficulties.
Dealing with the insurance company, and all the various providers who send out individual bills, is difficult with chemo brain. The company that sends out bills for the local radiologists' consortium assigns a different account number for each individual procedure. It's extremely hard to keep track of them all, and they will (as I discovered eight years ago, when I missed one) send you to collection for less than $20.
I worry about the people who don't have my advantages. I worry about myself as I grow weaker and less able. There has to be a better way.
47
There IS a better way: come to Europe. I did, right after the clown moved in. For starters, dental work: three implants for the US cost of one. And so on, and so on, and so on. But if one loves one’s country more than one loves oneself, one’s health, one safety, one’s happiness,… Oh well, stay where you are, then.
16
@citizennotconsumer. Although what you say is true, it's not like people can just up and move to another country and qualify for its medical care. Have some compassion! What is happening to this person is not her fault.
23
That's a very flip answer. Other countries have immigration restrictions just as we do. You wanting to move there doesn't mean they'll give you a resident visa or give you access to their health system. sure, Peter Thiel can gather up his couch change and write New Zealand a check for NZ citizenship, but the rest of us can't.
5
I’m not actually surprised and yet it is stunning that there is no mention of controlling costs with real social insurance. In this country, healthcare is just another industry.
I doubt this question would even come up in any other country. We are an absurd outlier. Single payer? Controlled costs?
17
Would love to see these studies include sufferers of serious chronic illness alongside cancer patients as their subjects. It’s as if cancer is the ultimate and only legitimate medical horror. Many non-cancer treatments are also lifelong; their symptoms, treatments snd side effects also leads down a road to penury. Omitting non-cancer patients further marginalizes those whose rare disorders already receive minimal funding and research.
17
Agreed! Chronic conditions such as inflammatory bowel disease, lupus, diabetes, etc. are common, and lifelong.
3
I wrote my masters thesis on a willingness to pay for a cure while fighting a cancer diagnosis of my own. Raked up over 164k in medical debt and had to file bankruptcy. Came to learn just how many Americans who HAVE health insurance still end up in my shoes.
18
Medical bills are the leading cause of bankruptcies. It's a fact.
5
What would I do if diagnosed with a deadly disease? Would I struggle, at over 70 years of age , to live a while longer? What would be the financial costs? Would it matter? What about the discomforts when you already have diabetes, high blood pressure, degenerating joints, and the other ailments that age generally brings - cataracts, loss of hearing and other minor ailments that clearly affect the pleasure of being alive. Do I have things to do yet that I consider important, even if no one else does? Is it sufficient to watch the sun come up each day, appreciate a tree, or the purr of a cat, or the nuzzle of a loving dog that may outlive me? Will I miss avocados, cherries, strawberries, watermelon, and othe edibles? Is eating and sitting in the sun on a rock on an autumn afternoon enough reason to continue? I don't know. Do You?
27
@Stephen Bowyer
Good questions, but it isn't just a matter of personal experiences - as a nurse, I've known about patients who refused expensive treatments so they would have assets to leave to provide for their families after their deaths.
24
@Stephen Bowyer. I think that should be up to the individual to decide, not the insurance companies. Not to mention that it is not only the elderly who get cancer - children get it, too.
5
@Stephen Bowyer some days it is enough.
This debacle shows the moral corruption of the right, particularly the right to life movement. No to birth control because there is a right to life. However, once born you're on your own. There is little support for education, affordable housing, food or the like. And, if you get sick, too bad. If care is available at all, it will likely bankrupt you. (mental health care is probably just out of the question).
Four years ago, a trip to urgent care for a muscle sprain landed me in intensive care with a DVT and PE and set off a chain reaction of ailments. Two years later, the cost was easily $200K, with about $15K out-of-pocket. Luckily I have ok insurance and could afford the co-pays, but even that would have burdened many hard working families. My boss, a staunch republican, objects to healthcare for all, but met me with a blank stare when I told her that this illness would have ruined me w/o insurance. She could not tell me why this was ok; she only knows that she doesn't want to pay for someone else's care.
To top it off, the right also opposes euthanasia. So, if I make the logical decision that I don't want to live in agony or burden and bankrupt my family for care, I don't have the right to end it, either.
So, apparently, you have the right to a life of ignorance, hunger, poverty, and pain that makes it impossible to "pull yourself up by your bootstraps". If you want something better, you should have been born rich.
Good job 'Merica.
95
"Financial toxicity"? Sounds more like "murder" in exchange for highly profitable extortion.
26
When you have some money and insurance, the talks about costs do not take place and you go broke trying to pay for it. You DIE ANYWAY.
When you are destitute and do not have insurance, the talks about money DO NOT TAKE PLACE. You DIE ANYWAY (as my brother did).
Do you see the fundamental common occurrence here? It doesn't matter if you have money and insurance or you don't. The talks about the cost of care and what insurance pays and does not pay DO NOT TAKE PLACE and YOU DIE ANYWAY.
Only Big Pharma and Big Medical gains. You die anyway.
My heart bleeds. RIP, my brother.
23
@Dejah every circumstance is different. I fought, had medical insurance, and ending up filing for bankruptcy to pay for treatments. For me, the treatments saved my life.
5
My wife has had 7 cancers over 40 years. Her mother sold her house to pay for her first treatment. This was the first of several staggering financial burdens faced by our family.
I have researched her latest cancer, lymphoma. She has had 3 recurrences of this type. The research indicates that cancer is a disease of the DNA. The very foundation of what makes us human.
Cancer can only be cured by correcting the defective DNA, until then the treatments can only attack the cell life cycle at certain points with varying toxic side effects. The effect is to often turn the disease into a chronic condition with life long implications. This in turn creates chronic financial stress. This condition does not end.
But it can.
Socialized medicine can go a long way to relieve this. We know this works. We see it working in many other countries.
28
Can you not explain who or what determines the price of this medicine and the profit that comes of it?
4
Chronic vs. acute. What’s better?
No matter what the disease, in the USA, chronic disease treatment is big business. So is the funeral and mortuary business.
From the diagnostic procedures, through any surgery and follow-up pharmacological based therapy, the endless support services and supplies - none of which can be returned for a refund if no longer needed... all are a “ka-ching” of the cash register into someone’s pocket.
Why has this happened?
Facilitators: insurance companies, marketing and advertising firms, doctors who are subsidized by pharmaceutical companies. Medical device manufacturers. Big Pharma. Hospital corporations. It’s all BIG business.
Fraught with fraud and a lack of regulatory compliance, not only do many of these providers not help, they actually hurt.
Botched treatments. Bad service. Physicians detached from the cost realities patients face. Infection control is horrible. Super-bugs abound - drug resistant infections attack those unlucky post-surgical patients who have compromised immune systems. You might die of that before you die of the chronic disease.
I sound like a cynical person, but I’ve watched this over and over again. Fear and loathing is more the situation.
Just listen to the TV ads. They make no sense. Shiny happy people with the fine print rapidly spoken warnings - this takes some creativity. Right. Why? Money-honey...
No thanks. Yes, find a country to beg to get into with better health care. Good luck with that.
15
Where to get the chronic funds? Two thoughts come to mind. The first answer: the notorious One Percent. The second answer: the notorious Wall.
9
The author claims she “put her life on the line” to participate in research for an experimental cancer drug that has provided a “miraculous prolongation” of her existence
I’m confused re: the alleged “self-sacrifice” (ie, putting her life on the line) element associated with participating in research that has provided a “miraculous prolongation” of her existence.
If the experimental drug has “miraculously prolonged” her life, it suggests that she entered the trial in fairly dire straits, likely with metastatic cancer not responsive to other therapies.
In that case, her chances of longer-term survival (let alone 6yrs on this drug) would likely would have been low.
Of course, this drug could have hastened her demise despite offering a chance of significantly prolonging her life.
I may be wrong. She may have risked her life only for the benefit of others for a drug that offered her no possible benefit.
But, if short(er)-term survival was the alternative, it might be fairer to say that when her own life was on the line, she took a chance on a drug that ended up granting her a “miraculous prolongation” of her presence on this earth, no matter what the problems with the healthcare financing system are.
I expect she’s unlikely to lose access while she benefits from the drug. Unless it’s truly accurate, the “my sacrifice” component of her piece only detracts from her important & powerful points on healthcare financing.
3
@Pete. I believe that if the drug she is taking proves widely effective, it will be approved by the FDA and go on the market. At that point, unless she can pay for it, she will lose access to it.
7
The costliest medicines are used in the most desperate situations for the patient. When cancers have spread and the patient is closer to death than ever, doctors and patients reach out for these very expensive drugs. The benefit derived from end of life active treatments is usually measured in weeks or months. However patients benefit more from hospice care, living longer without active treatment but with intensive supportive care. Not surprising, hospice care is far cheaper. Patients and theit families are cared for in hospice which increases satisfaction with the choice for better quality of life.
14
@Charles Nester
I assumed the same, but decided to look a bit and found a report [ at https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2017.0174] which suggests it isn't so simple. Hospice doesn't always cost less, even when it is appropriate. From the study:
"US efforts to increase the share of end-of-life spending accounted for by hospice care have been successful, as shown by rising rates of hospice care. Yet this paradigm shift has not been accompanied by a reduction in end-of-life costs, since hospice care is also expensive and inpatient care costs have not fallen commensurately."
It notes that medical costs increase in the 3 years of life - a long stretch!; For the last 3 months, expenses are not different in the US from countries which are more "universally" covered.
One conclusion echoes one of Ms. Guber's points: "while some terminal illnesses generate short periods of concentrated expenditure, many are the culmination of chronic conditions."
US figures on medical spending DO NOT generally include long term care, only usually limited days in rehab or covered by Medicare, so another high cost of debility is ignored.
In the UK, a decision was made to limit use of "expensive, but not cost-effective, cancer drugs." Controversial, to understate the reaction. Under this, would someone like Ms. Guber be refused ongoing treatment? Would she have to pay for it herself (or have taken out a private insurance which she couldn't afford either)?
5
A great column that needs to be read. However, it is not only cancer treatment that can bankrupt and financially ruin a person. Many chronic diseases, which last a lifetime, can financially ruin a person with the high costs of medication (Congress, do you hear us?) and inability to work. Other developed countries have found ways to ensure their citizens do not suffer financial ruin when diagnosed with cancer or other diseases. The United States can afford to do the same.
43
@Pdeadline I just wrote a letter to my governor's office to see if we recognize Rare Disease Day (Feb. 28th) here in WA. The proclamation was first signed in 2010, apparently. And in 2018, the U.S. recognized Rare Disease Day for the first time. This article and your note remind me that I need to keep writing to government officials to remind them that those of us who live with the ongoing costs of medications could use much more support.
11
@S. Casey Thanks so much! I write my Congressional reps regularly on this issue, also. So nice to know you do this!
6
There are no fully satisfactory answers here. There are only trade-offs, three of which predominate.
One, we can subsidize the costs of these drugs by paying higher taxes or insurance premiums. Patients will be much better off although taxpayers and payers of insurance premiums will be slightly worse off.
Two, we can continue the current system in which people die because they can't afford treatment while other patients go bankrupt.
Three, we can decide that we will not allow companies to charge exorbitant prices for these important and wonderful treatments. But many - although not all - of the people investing in and developing these treatments do so to make money; preferably, from their perspective, as much money as is reasonably possible. This profit seeking motive is inherent in any business, including drug development So reducing prices to "affordable" levels will lead to less innovation and greater number of fatalities (due to less innovation) although financial toxicity would diminish appreciably.
I would like to hear from someone who can argue that we can have all of these new treatments at a price that is affordable to the patient, the taxpayer and/or the insurance premium payer.
10
The government spends a lot of money on research too. Pharmaceutical companies reap much profits from this.
13
It happens in almost all developed countries, the USA is a big market but I doubt pharma companies develop treatments just for that market, and would not develop them if the USA paid less. Canada, Germany, France, the UK, Australia, etc pay a lot of money for the drugs and patients do not go bankrupt. In Spain we fund it with taxes. Taxes depend on how much you earn. I have a good salary and pay 29% in taxes. My cleaner pays less than 5%. With that we both have sick leave of 18 months, disability payments if it goes beyond 18 months (both with full salary), healthcare is essentially free (I pay about 40% of chemistry drugs, cancer treatment and every hospital treatment is free) and free education until university ( university is about 2000 euros per year in public universities). That can be achieved with the taxes you pay. Insurance companies do not make that much money though.
22
@Schneiderman--Other countries, whether they have single payer systems or socialized medicine or private insurance, have very stringent controls over their health care. And they often ration care. Not every breakthrough cancer treatment, for example, is available in all of these places. We will need to face the fact that there will be tradeoffs if we want to emulate any of these foreign plans. And many Americans are not willing to accept that they can't have any and all potential treatments.
5
Every young person in the US needs to read this article so that they can choose to immigrate to a country with universal healthcare coverage.
Put more plainly, they need to move to a more civilized, humane country.
I, too, have experienced the loss of almost all; mostly due to medical insurance companies (OSCAR); healthcare institutions that delayed my care because my bill was too high (Cleveland Clinic); and the state of NC that allows insurance companies (Hartford Insurance) and private companies (Biltmore Farms LLC)/corporations to disallow payment for injuries due to an archaic common law, even when the company caused the hazard that caused your injury (Biltmore Farms LLC).
Until people begin naming the entities that cause the financial and emotional harm (as you fight for your health), others cannot know and understand who these entities are that add to the harm.
36
I moved from California to New Zealand a few years ago, and was diagnosed with metastatic breast cancer fairly recently. My doctors’ appointments and most treatments, X-rays, MRIs are free. Medications are $5 each, until I’ve spent $100 in a year, and then they’re free. However some of the cutting edge treatments and medications are unfunded, meaning we pay dearly for them in comparison with European countries and Australia. But on balance I’m grateful that for the most part medical treatment is not financially debilitating in the way it can be in the Old Country.
13
@Meg Conway
Being a healthy 48 year old man that was diagnosed with stage 3 esophageal cancer with lymph nodes involved I thank God every day for my private heath insurance and Sloan Kettering. I work for a company that has only 45 employees and Cigna has been amazing. I am on message boards with people who live in countries with socialized medicine and the care they receive is pretty much killing them. I pay less for my heath insurance than I do for my car payment. Most American's can get a job working in the public sector that has amazing insurance and benefits that my taxes pay for.
2
@Mike
Tens of thousdands of the Americans who resort to bankruptcy every year because they can't afford to pay their medical/prescription bills were covered by health insurance.
You would be sickened to read what really goes on.
(Want to get sickened? Look up Kaiser Health News.)
13
I read somewhere that Big Pharma wants treatments for all diseases, and cures for none. Ongoing treatment means ongoing profits. A cure means you've lost your good customer.
A for-profit medical system has profound drawbacks.
46
Nothing of substance will change until we stop treating medical care as a privilege to be earned. Somehow, we got to a place where we’re more afraid of someone ripping off lord knows who if they want to go to a doctor and can’t afford it, than the profiteers. Once we recognize that you can’t have a healthy society with millions sick, then we have the discussion of how to pay for it. Plenty of other places do it. Millions get to live lives where they don’t have to worry about affording a simple doctor visit.
38
Yes the financial impact is just as bad or worse than the physical/emotional impact.
Most of the people in my family have died from cancer. I'll probably be next. I have already decided that when I get the diagnosis I will not treat it and will just try to spend my money enjoying whatever time I have left.
What a waste of money and you end up being miserable and dying anyway. I've seen it happen so many times. Not me. I've learned from their mistakes...
34
@sfdphd--You know, this depends on the cancer. In my case, we were out of pocket about $12,000 for the first year of radiation and scans and surgery and other care, even though we had pretty good insurance. But I was cured and am living a fine life now, albeit with permanent side effects, some of which require medical treatment, from my cancer treatment. Not all cancers and treatments are the same.
13
Socialized medicine could help this predicament in many ways. However, anyone over the age of 40 isn't likely to benefit given the current state of politics ... a key factor since political will across the spectrum is required to institute such a program. As other have noted, it isn't just cancer that is bankrupting folks, but major disease in general. Add in mental health, autism, dementia, Alzheimer's, Down's Syndrome, etc., which are conditions can remove the ability to earn or even organize a life at all. My friends worry about their autistic children -- who will care for them when their elderly parents can no longer be there? Then there are my elderly relatives in their 90's. Too frail to care for themselves, out of money years ago, and in Medicare beds at nursing homes for round the clock care -- alive because of pills, pacemakers, and costly dedicated help. I wish socialized medicine was the panacea so many expect it to be. I expect it to be available about the same time as a cure for cancer.
8
I have spinal stenosis and am confined to a wheelchair. I worked since the age of 16 and had to cease working at 61. I applied for social security disability and with denial processes and appeals it took 3 1/2 years until I was granted disability. In the interim I sold most of my possessions, furniture, jewelry, music, whatever I could just to live. Sold my house to live on the meager proceeds just to get by for 3 years. Thanks to the ACA I knew I had medical insurance. While my medical condition did not bankrupt me it took everything else.
50
I’m so sorry. My heart goes out to you.
11
Thank you for your kind thoughts.
4
I'm so sorry. My friend had a stroke and is going through the same thing. I don't know why it's so hard for this country to grant disability benefits for the disabled.
our method of distributing resources to medical health needs is abysmal. That said, it is impossible to imagine a world where some available treatments aren't too expensive to be used. That is a fact of life in a world where technology starts expensive and then becomes less so over time. We can complain about big pharma (and I do) or other villains, but in the end there is always more that we could do than that we can do because of price. For instance, what if we discovered that going into space killed cancer. Could we honestly (today) afford to send all of our cancer patients to space? or would we have to work (over time) to make space travel more cost efficient and safe. What was too expensive 20 years ago (immune therapy for instance) is becoming more common place over time. trouble is , when you are sick, time isn't something you have to give.
9
It's shameful.
Here in France, socialized medicine covers 100% of certain long-term illnesses including cancer (what kind of cancer? All of them. Cancer. Period.) As a self-employed person, I pay 6.5% of my income in health taxes, so obviously the more I earn the more I pay--not the sicker I am.
I know a lot of people in the U.S. feel they have "Cadillac plans," at least until they make a claim and discover that for one reason or another the care they need isn't covered.
No health system is perfect, but the U.S. system is easily the worst--and with Obamacare it's far better than it used to be (do you remember pre-existing conditions?).
53
@Cate, here in the US, anyone who makes below a certain threshold - about $45-50K USD per year - and who has individual insurance, pays about 9% in health insurance premiums, plus $1750-6500 USD in deductibles, plus coinsurance and co-payments for treatment. Theoretically, the out-of-pocket costs have a limit; however the insurance doesn't necessarily cover necessary or recommended treatments.
For someone my age, who makes over $50K per year, the premiums would be over $9K per year.
Not a good situation, here in the US.
26
@Cate Obamacare was a disaster. Billions lost just trying to get a decent website up. No one fired for that. People could get subsidized care, but the cost for those that couldn't get it was ridiculously high, along with the deductions. Add in having to give up the doctors you already had, it was anything but good. My daughter has an excellent plan at her work, about 1/3 cheaper than obamacare and much better. Why couldn't the government do that? I personally feel it would be better to go the German way, it's more similar to us already.
5
Obamacare provided me with affordable healthcare which I otherwise would have had to forego. Preventive screenings are provided at no charge, and care cannot be denied due to pre-existing conditions. My premiums have also been about 1/3 of my former $600/month COBRA premiums, so it has decidedly been a lifesaver.
33
Even worse than the price of medications is that the Pharmaceutical Industry, in general is not looking for cures. Cures do not create a stream of revenues. Drugs that address symptoms or prevent progression do.
12
@Anne Zimmerman You know this how? You are smearing an entire group of people that you know nothing about. Are you a research scientist? Have you conducted any drug studies? It's disgusting that people like you will spread any lie or conspiracy theory with no basis at all. You should be ashamed.
3
I often discuss the horrors of our system with people who voted for Trump. Their response is always, "I refuse to pay for treating people who should have eaten right, exercised, and not smoked or used alcohol!"
I then advise them, "Go visit the nearest cancer care center and tell every patient and their family that you blame them for their illness. Then come back and tell me what they said to you."
66
@MLChadwick, in many of the 'red' states that voted for DJ Trump, opioid abuse is endemic.
I doubt "those" people or their family members are eating right, exercising, and avoiding cigarettes and alcohol.
13
@MLChadwick and the trumpsters support removing pollution controls--big corporations are polluting our air, water and land with toxic chemicals that cause cancer, asthma, birth defects etc and then they want to blame our lifestyles for the cancer or other diseases we get.In fact miscarriages and stillbirths are also higher in polluted areas but the so called pro-life crowd doesn't care about those babies!
5
Don't forget that Obama signed the Monsanto Protection Act and bailed out the banks and not the people who had their homes and savings stolen by banks. And let's not forget that millions of family pets were abandoned to die. Obama had class on the surface, but deep down, he was Trump Lite.
Pharma companies aren't just fleecing sick people. When someone goes bankrupt paying for healthcare and has to turn to social services to make ends meet, the tax paying public at large is essentially subsidizing the corrupt pricing practices. Pharma companies that set outrageous prices for treatments or drugs effectively drive up health insurance premiums for everyone, and when they claim they have some rebate or special access program for those who can't afford the drug, it also eventually falls back on the public via tax breaks or government subsidies. It's a perverse system that exploits the sick, and ultimately, we all pay the price.
54
Alex P's comments needs more upvotes. This article doesn't mention that bankruptcy is not common in countries with national health insurance. This is an area where unfortunately American exceptionalism is to its citizens' detriment.
40
@ms what he said is at least true. The medical-industrial complex we call health care ( it is desiase treatment and financial ruin) is a disaster. A national health plan WITHOUT Insurance companies will save Billions and Billions for consumers.
What he write:
It’s not true that few viable solutions exist. At least 30 other countries don’t have this problem, because they share these costs instead of dumping them on individuals. Medical bankruptcy is an American invention.
25
but we are too busy funding endless wars and a bloated military.
Having a child with debilitating mental health issues can be a serious drain on your finances: therapists, schools, psychiatrist, neuro psychs, special tutors and services, education consultant PLUS therapy for traumatized siblings and marriage counseling/parent coaching so you can learn how to work together to help your children.
As a parent, your work production also goes down, as dealing with a child with depression, anxiety, autism, etc. is a real part time job.
40
@M--Same applies for a child with anatomical neurological issues.
5
The United States has wanted to use "market forces" to set and limit drug prices. What does that mean in practice? It means that there have to be enough people who find the financial pain of paying for a drug so unbearable, that they will forego treatment. Those foregoing treatment have to be of a quantity that, financially, they are more significant than the extra income gained by higher prices from those who can afford to pay. If there is not enough financial pain, then the prudent thing for a profit-maximizing drug company to do is to continue to raise prices. The financial toxicity discussed in the article is built into the system.
But don't blame and demonize the drug companies, they are simply responding rationally to the financial incentives that the system supplies. "Don't be evil" as a mantra is not a replacement for a viable financial policy. We have to admit that so-called market-based incentives don't work in life threatening medical care. The replacement has to be something else, which will inevitably be a form of government-negotiated pricing and rationing.
18
@Kent James The purported panacea of "the Market" is simply ideologically-driven purposeful ignorance. One key criterion for a true free market is price discovery. That is impossible for even simple medical procedures or drugs.
2
I was just in the hospital for a necessary surgery for a non cancerous but metabolically destructive tumor . ( Such things are possible .) People with my diagnosis who are not surgically treated suffer bone loss, kidney failure, pancreatitis and serious hypertension leading to strokes and heart disease and have a shorter life span. But of course I was immensely relieved not to have cancer. The bills for diagnosis: a nuclear scan, an immense amount of lab work and the bills for consultation with a specialist prior to the surgery were in the $8,000 range for a person without insurance. I have insurance and paid about $2,000. The surgery itself and one night in the hospital was billed at $49,000 plus. So far they have told me I will need to pay about $5,000. I am so grateful to have decent employer provided coverage. Because $7,000 is not bankrupting for a middle class person. But $57,000 would put most people is a serious hole. And if I were not cured but this was ongoing every year ? It is not right, fair or reasonable that we pay different prices depending upon the quality of our coverage. And my deductible is $750 annually. I am well aware that some people pay $8,000 and up before their coverage kicks in. And just ask the doctor's office to get you in before Dec. 31st if that huge deductible will kick in again in January. Good luck with that. It is just wrong, wrong, wrong and I'm looking at it from the "works fine for me " perspective. We need to take care of everyone.
87
I am happy for you that everything turned out well and that you received the care and treatment you needed. But 7K is not a small copayment neither is it an amount that most people can come up with easily. It is still hard to believe that a rich country like this cannot provide appropriate medical coverage for everyone.
38
@Consuelo
Glad to hear that you are doing well. However, the only way to make things more affordable is to either materially reduce hospital and doctors' fees - unlikely - or to increase taxes, which is also unlikely. Thus, inertia keeps us in our current system.
6
@Karen B.
They are giving me a 24 month no interest payment plan.
Of course I could not come up with $7,000 cash on the barrelhead.
But I do think that the facilities here have figured out that getting the money reliably over time is better than not at all. Also if I had a chronic condition with these kinds of costs I could clearly not ever get out ahead of it. These are the people I worry about.
11
I’m a 65-year-old woman who was healthy until the age of 46 when I first got breast cancer. 15 years later I was diagnosed with bowel cancer and then two years after that metastatic breast cancer. My husband is being treated for prostate and head and neck cancer.
The strain of having to deal with such serious medical conditions while coping with the worry about medical costs and frustration with dealing with the insanely complicated medical bills is a source of great anguish.
106
@Barbara Bullock: So sorry to read about you and your husband's having to deal with cancers.
Best of luck to both of you.
4
I have lived with HIV since 1995, and the issues expressed in this article definitely covers those with HIV as well. The Ryan White CARE Act, along with other federal programs, make the meds necessary to manage HIV, available, but in many states your income has to be at the federal poverty line to qualify; otherwise the cost can easily add up to $4,000 a month.
'American Exceptionalism' gets more than a bit tedious when it means 'you are expected to bankrupt yourself, to enrich insurers and pharmaceutical houses;' when the choice is laid out, as the Right would have us believe, between socialized medicine or none at all, socialized medicine looks MUCH less evil. I personally think we should adopt Germany's system and move past this, and into the 20th century.
71
@Mark Janes
Not even the 21st century!
1
Thank you for this. It describes my life ever since I was diagnosed with an early stage cancer four years ago. In just a short time, I went from having savings to being hopelessly in debt. Though my cancer is gone, my debt will be hanging over my head for the rest of my life. I can't save any more, because everything I earn goes to paying off my debts. It's not just medical debt. When you have cancer, you're often too sick to work. But the bills don't stop coming. You still have to pay rent, buy food, and maintain your children. When your savings is gone & there's little to no money coming in, how do you pay bills? Credit cards! What's the interest rate on credit cards? It can be just under 30 percent, if you're unlucky. I finally became medically noncompliant last year. I'm supposed to have screenings and tests twice a year. Even though I have subsidized ACA insurance, it doesn't help much, because the co-pays and deductible are too high. The insurance company declines nearly everything. Fighting the insurance company is exhausting. Tracking and juggling payments, managing debts, dealing with debt collectors and billing offices - all of that eats away at your peace of mind. Some days I wake up contemplating how to kill myself, just to get away from the financial pressure, but then I remind myself that I have a family who needs me, so I get up and keep going. But I'm not really living my own life any more. It's more like indentured servitude to credit card companies.
171
@Anonymous: I am glad your cancer was caught early, but sorry this created an entire set of other problems for you.
Have you considered setting up a Go Fund Me page to help you with your debt?
Best of luck to you and your family.
2
When a patient comes in the door with a problem they are suddenly transformed from a human to livestock, to be milked for as much as possible. That is the #1 disease that needs to be cured in this country.
67
And my stepdaughter has chronic myelogenous leukemia. The drug that has kept her alive and healthy for years costs over $80,000 per year. No wonder Medicare is not financially sustainable over the long term!
10
Thank you for your thought provoking article which illustrates the dilemma that we all face in the treatment of chronic disease. The new treatments now becoming available offer the potential of enhanced quality and quantity of life but at numbing costs. I don’t pretend to know how our nation should tackle this issue but I can relate our story. My wife developed stage 2 breast cancer while I was an active duty soldier in the army. She went through surgery, radiation therapy and chemotherapy including 5 years of hormonal therapy. She saw primary care doctors, oncologists, radiation therapy doctors and pharmacists and was treated as a hospital inpatient and as an outpatients in multiple settings. All of this without us ever receiving a single bill. Why can’t this be true for everyone? What could be more cruel than an effective treatment that is out of reach?
74
The cost of medications, treatments, regular testing and monitoring for side effects and for recurrence has become totally unaffordable, not just for some, but for everyone.
I have metastatic breast cancer. The cost of my infusions alone (drug cost) is $640,000 per year, for standard treatment for a relatively common subset of the disease. And don't forget the costs of quarterly CT scans, echocardiograms, blood tests and other treatments.
These costs would bankrupt any American family.
While I have been fortunate that Medicare and supplemental insurance have been paying for the bulk of the costs, there is still a substantial copayment. I still live in constant fear of changes to health insurance that will leave me unable to afford these life-saving medications.
Why do drug companies charge so much in the United States for their drugs? Because they can!!! The only constraints are what insurance companies are willing to pay. Medicare is not allowed by law to negotiate drug prices.
This is not a "free market". Drug companies are given the protection of patents from the government for their products, preventing anyone else from selling the same drug at a lower price. The courts enforce these patents. They have tax breaks supporting new drug research.
What is the solution? For starters, allow Medicare to negotiate drug prices.
Ironically, I spent my entire working life in pharmaceutical research, developing drugs that I may not be able to afford.
113
Professor, I thank you for literally putting your own life on the line, and serving as a test subject. And it truly was service, to help other patients. This straightforward piece perfectly explains the next diagnosis, that of financial toxicity. Unwanted, unneeding and at present, unavoidable. This is a clarion call for single payer healthcare for ALL. No, I’m not calling Big Pharma evil. But, they need to be controlled, regulated and subject to price negotiations and control. In my opinion, they are generally the lesser of the twin towers of our hopeless healthcare system, the other being Medical Insurance Companies. They are leeches, parasites and unnecessary. Medicare for ALL. It’s the logical and decent thing to do. Period.
36
Welcome to the insurance company and big pharma death panels. The only reason they care if you die is that you cease to be a consumer.
Those of us with chronic and expensive conditions just didn't pick the right parents. And in a civilized country, it wouldn't be a choice between medical care and destitution.
26
I don’t have cancer, but I do have other chronic conditions.
My wife and I have insurance, such as it is.
This month, between regular doctor visits, specialists, medications, etc., our bills added up to the same amount we paid for our premium.
Would it have been more without it? Definitely.
Does it still feel like a cruel joke? Yeah.
Health care is a full third of our monthly budget.
42
@Margaret Fox
Those with insurance pay wholesale (negotiated) prices. Those without insurance pay retail prices.
Just another cruel twist to our inordinately complex, confusing, disjointed and unfair medical "insurance" system.
24
I like that, "...quite a few admitted that they would go for broke to witness the inauguration of another president." That would certainly bring joy to my life with cancer. Ms. Gubar, thanks for your excellent writing on this important topic and your other works.
25
Essentially not a problem here in Canada or other countries with a single payer universal healthcare system. Of course, there are some exceptions but nothing compared to the barbarity of the USA.
111
@Kevinlarson
There are still some drugs used for cancer treatment in Canada that are not covered unless you are lucky enough to have extended health coverage that will cover them (not all do). My husband is working past the age of 65 (and has had cancer twice himself) to keep his coverage to pay for the cost of my medication for metastatic breast cancer - $10,000 per month. We could not possibly pay for it on our own. These medications are part of MBC treatment protocol now, yet without sufficient funds or extended health coverage, you are out of luck.
All is not rosy here, but definitely much superior to the dreadful cost and accessibility of medical care in the States. Thank the powers that be that we live in Canada.
20
This kind of financial toxicity isn't limited to cancer patients; it is systemic. At least with a disease diagnosis you have a choice. An accident or crime victim does not. My elderly father fell down the stairs in his home last year and spent 4 days in the hospital. The bill was $68,000 - for just 4 days - $43,000 of which was pharmacy. When he was taken to the hospital, at intake, his injuries were listed as the result of an "accident." Consequently, Medicare and his supplement initially refused to pay pending submission of an affidavit stating that we weren't suing a 3rd party to recover medical expenses. Subsequently, he was in rehab for 5 weeks and now resides in assisted living. At every step in his recovery, the system has assumed there is at least one willing/able adult family member in proximity who has all the time in the world to devote to his needs. There is no accommodation for adult children who live/work in different states. Don't get me started on the financial/legal system issues. Even with power of attorney we were treated like criminals trying to steal my father's money as we navigated the financial obligations of assisted living which is not covered by Medicare, Medicaid or private insurance. All this transpired while my father lay flat on his back with 11 broken ribs and a fractured pelvis and femur. Had he not had 2 educated assertive adult children advocating for him he would have been bankrupted just on the 4 day hospital stay.
155
@Steve725 My sympathies to you and your father. My biopsy and one night stay in the hospital resulted in a $50,000 hospital bill. To make it worse, I should have been able to go home after the biopsy, but because the procedure took place late at night instead of the time it had been scheduled I was forced to spend the night in the hospital.
35
@Steve725 Thank you for pointing out that the injuries from a fall aren't only physical, but falls can be just as traumatic financially.
Possibly worse. Bones may heal, but once a nest egg is gone, it rarely comes back.
People without competent and available support are unaware that they are skating on such thin ice because the safety net has so many holes.
Fall prevention isn't perfect, but your father's story should make every older adult consider it essential far before they become at high risk for one.
12
Thank you as always, Ms. Gubar, for another insightful and eloquent piece. And if the cost of treatment itself is not distressing enough, there is always a phone call to the claims department at the insurance company to raise blood pressure and anxiety. Their byzantine policies and administrative shuffle games have a deleterious effect on health. How do chronically ill people with limited time and energy manage the endless paperwork and follow-up with billing departments required to access their rightful benefits? The high rate of billing errors and wrongly-denied claims, along with opaque pricing structures and lack of accountability, place yet more hardship on the sick. Many people just give up, which seems to be what the insurance companies are counting on.
40
1. Healthcare is an industry in which the demand (or need for care) does not go down when the cost goes up. Therefore a pure unregulated capitalistic healthcare model will never work.
2. What do you think the mark up is on that bottle of pills that cost $20,000 a month? What do you think it costs to actually make the pill? Even allowing for the cost of research, I suspect the mark up is ridiculously out of line with any other industry in which demand for a product goes down when the cost goes up.
3. We need to: fund drug research thru public universities and things like the National Institutes for Health. Make successful drug products open domain. Use an insurance model of "everyone in, and everyone covered" for healthcare, medicare/medicaid full coverage for all. shift from paying our money to the "for profit" sector to a tax used as an insurance pool for everyone's needs.
4. how can we as country expect to excel when people are distracted from their life's industry by the struggle with basic care and basic finances. We shoot ourselves in the foot when we so severely handicap our people.
52
Actually, much drug research *already* is publically funded by either state or federal government. But the pharma companies have been allowed to take that research and privatize the profits. It is one major arguement in favor of allowing the government to negotiate drug prices.
35
To have a drug that can prolong a life and help a person but the price of which is so out of reach is truly a nightmare. Isn’t medicine supposed to help people not bankrupt them?
I would be interested in an article that compares the price of those drugs in US to other countries
I would also like to know the availability of these drugs in the US as compared to other countries.
It’s shameful
51
@A Seeker
It is shameful. Ever so much.
If you have not been affected by cancer, consider yourself lucky, but also consider that luck may not last, so please resist the temptation to be a complacent observer re: this issue.
I cannot personally speak to the cost of drugs in other countries, but I know from others, it is far less. However, two years ago, my wife had her 6 month cancer monitoring scans in Sweden. The cost of those was far less, easily a quarter of the cost, or less, than what is billed here. (Of course, that is what was billed to us as Americans, Swedish citizens pay nothing/0, assume what we were billed was the same or a bit more than the actual cost to the government.)
Additionally, consider this. In the US, the cost of a drug my wife currently takes to control her cancer has been billed to our insurance anywhere from $7,000.(home delivery) to $16,000 (university hospital) to $37,000. per month (prominent cancer center), depending on which institution administers it. This illustrates that in the US, we also have to take into consideration the "middle person" or multiple "middle persons" who take their cut too; a situation which is usually non-existent in the billing considerations in other countries that provide healthcare as a right of citizenship.
It is worth repeating: IT IS SHAMEFUL
89
@Read
A motto for the bandit pharmaceutical industry:
"Your Money or Your Life."
20
Thank you for bringing this out into the open. It's valuable information.
16
A society makes choices.
Some share the cost of disease care.
Ours lays the burden upon the patient.
It is like the phrase in the novel (les Miserables, I think), “both rich and poor are prohibited from sleeping under bridges or stealing bread.”
We are not a moral nation.
Stephen Rinsler, MD
134
I read this article with dismay. I hope that should I contract an illness, I have the strength to accept death. The money spent on these treatments could have gone to public health. When does a person acknowledge their own insignificance? To spend so much money on futile treatments when our cities need improved water supplies and young parents cannot afford vaccinations. I don't understand a system that places so much emphasis upon individuals, but lets communities suffer unemployment, gun violence, and drug addiction.
17
@landless
The author does not write about “futile” treatments, but about the fact that some diseases, such as HIV-AIDS and some cancers, are no longer a death sentence. I have been on a daily medication for cancer for eight years. I still have a very productive life, but the high cost of my co-pay will one day make it impossible for me to continue in this path. Why can other countries offer these drugs at a substantially lower price, and also offer a greater social safety net.
34
@Rose A. the author does, in fact mention the patients that have late-stage disease where they may not understand the "limited or nonexistent gains such financial sacrifices tend to produce." which leads to futile expense and suffering...
8
@Rose A.- The cluelessness of so many Americans appalls me and frightens me because the question "why can other countries offer these drugs at a substantially lower price, etc." has only one obvious answer, one that any Canadian, Briton, French, German or Nordic person instinctively knows: indispensable government control over every aspect of health care that keeps the greedy and the exploiters of the sick and the vulnerable at bay.
Do you want to see domestic terrorism at work? Look no further than your home grown drug company or your "non-profit" hospital.
69
It’s not true that few viable solutions exist. At least 30 other countries don’t have this problem, because they share these costs instead of dumping them on individuals. Medical bankruptcy is an American invention.
218
Actually many of these options and trials do not exist in Europe or other countries with non-profit centric medicine. As someone whose family member was one of the first people in Ireland to receive immunotherapy, I would be the first to say it’s just not that black and white.
In Europe there’s a very controlled system where these risks and choices are simply not available to the general public. So these trials and associated costs are pushed into systems like the US, where there is arguably more innovation, a LOT more cost and more risk.
My brother sadly did not survive but I would have gone bankrupt if it meant I could save his life. At least the immunotherapy didn’t bankrupt him I suppose.
1
@Tuscangal Blatantly untrue. We have clinical trials for new pharmaceutical agents just as the USA does. My spouse and his many friends with Multiple Sclerosis would be the first to tell you that their lives and level of handicap would be greater if they had not been able to participate in studies that have turned into treatments. US pharmaceutical companies are not innovating, they are buying up companies that might have promising treatments...and typically these smaller companies had their research paid for with NIH grants or private grants. The US companies are also using the patent system to preserve their lock on drugs that should have been long been generic.
12
@Tuscangal I live in Canada and am on my second clinical trial for cancer treatment. I've had cancer since 2007, now stage 4, but I have never paid a penny except for parking at the hospital. A couple of times I paid $350 for a night in a private room but I usually get a private room for free if they're available.
No bills, no paperwork, and good care, even during COVID.
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The US is #2 in cost and #49 in quality of care. It's toxic capitalism that has overtaken our politicians and health care system.
Only a very few can withstand the costs of a major illness or accident. For most citizens, one major illness wipes out a lifetime of hard work and savings.
At the same time, the same pharmaceutical and medical services can be less than a co-pay payment outside the US. And in those countries, the medical professionals live very comfortable lives.
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I’ve told my family that should I be befallen by some awful disease that requires expensive meds, many experimental at that, that may or may not make much of a difference that it’s better to spend the monies on a big send off party than for the family to deal with financial hardship, even bankruptcy, from paying usurious fees to add a few, probably wretched, days to my existence after my demise. Not that this concept is remotely in the minds of elected politicians with their gold plated lifetime coverage on the tax payers dime.
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I live in a European county where there is socialized medicine. I could have used the socialized services for all my cancer surgeries and treatments but instead used my private insurance in order to free up the government monies for those in need. If I were in financial trouble and couldn’t afford medicine I’d sell everything I have and go into great debt in order to prolong my life. How very unfortunate that many have to. My heart truly goes out to them.
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From 2013 Charlotte Observer report about abuse of 340B program meant to improve drug access for medicaid patients: "Last year, Duke University Hospital purchased $65.8 million in drugs through the discount program, which saved $48.3 million. It sold the drugs to patients for $135.5 million, for a profit of $69.7 million. The profit would have been $21.4 million if Duke had not participated...At Duke, about 67 percent of patients who received those discount drugs were covered by commercial insurance companies, which often pay hospitals many times over cost for medications. Only 5 percent of the Duke patients were uninsured." I dont know if this has been remedied but likely a big source of fintox.
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It's a sad commentary that so few comments have been submitted in response to this important column.
Anyone who has had chronic, serious health issues for decades (as I have) understands the price paid for simply trying to limit disease and disability.
I was born with serious health conditions. I've never smoked, and keep my weight down. I exercise to the extent my disabilities permit. And yet, because I'm not yet Medicare age (and it may not exist when I am), I pay, out of pocket, after taxes, some six thousand dollars per month, every month, for insurance premiums, copays, and the eight medications I must take daily.
I don't have an end stage cancer diagnosis such as that described in Ms. Gubar's column. Nonetheless, as a person in my early 60's, my "retirement" funds have been spent these past several decades for needed medical care and prescriptions.
And I know I am not alone. Many millions of us in this country have had serious illnesses all our lives, for conditions that we "did not bring on ourselves". And yet we are penalized for not winning the health lottery the way our healthier neighbors were so fortunate to do.
In what kind of America is this fair? Not one in which any of you luckily more healthy folks would ever want to find yourselves in.
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@Donegal Most healthy people are unwilling to think about the fact that if they live long enough they will become seriously unwell. Unless they are personally in contact with people who have a chronic disorder or disability, or are in the health professions, it is less stressful to deny that something devastating could happen to them in an instant, and that there could be no cure but also no quick and painless death.
The premature babies that are surviving with disabilities, and the people who survive cancers to find that they are living with ongoing consequences for decades will change the future, but for now, it is another way this country is divided.
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Sad story!
Now imagine if our short sighted politicians had chosen not to waste large sums of money on supporting the military-industrial complex over the last 3 or 4 decades. We have a military complex that spends more than the next 7 or 8 largest countries in the world, year after year after year!
What if instead of buying votes, building more weapons and bombs and practicing regime change in foreign lands, we devoted the majority of the money spent on defense to looking for cures for diseases like cancer, Parkinson's, MD and so on. Maybe throw some money into building a real space station or moon base that might be used for exobiology medical research.
I am hoping the candidates in the upcoming presidential election get asked a question about reigning in the defense budget and redeploying the majority of that budget to more useful endeavors.
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It would be wonderful if basic research was funded sufficiently so that less people would develop cancer. Imagine if the role of vitamin D mutations was understood, and infants were screened at birth and given the correct supplements. How about junk food, sugar, and alcohol taxes so high that people would choose to eat well. With less people actually developing cancer and diseases related to obesity, the healthy population could afford to pay for the research and then the treatment of those with genetic diseases
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@ARL Agreed. Cancer surveillance ("early detection") and treatment are life-saving, and for that I am grateful, but they are also much more profitable than prevention. A true prevention paradigm would mean framing disease risk not only in terms of the individual choices you site (diet, exercise, alcohol consumption, etc.), as we do now, but also as the consequence of societal choices, e.g, to ban Chlorpyrifos and Per- and Polyfluoroalkyl substances (PFAS), or not, to take two current examples. Or to rollback regulations on mercury emissions by coal-burning power plants, as the Trump EPA proposes. The cost burden in disease and dollars for the illnesses that result from those decisions will be borne by you and me, not by the industries whose profits they are designed to protect.
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@ARL,
I used to think like you do, until I got cancer. I'm athletic, slim and have avoided indulging in processed food and have never smoked. I have no family history of cancer yet guess what, I got it anyway. I'm currently in remission. Cancer doesn't care if you lead a healthy lifestyle, although being healthy may make recovery easier. In the 60's 1 in 20 women got breast cancer, and now it's 1 in 8. The pesticides in our food supply and the pollution in our air are hard to avoid. Keep your fingers crossed that you remain lucky.
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This is not exclusive to cancer. Treatment for muscular dystrophy, Parkinson's, multiple sclerosis and many other chronic illnesses can financially ruin people. The treatments for these illnesses don't cure people. They might be less expensive than cancer drugs, but not always. They could extend the life of a person, sometimes so that they can die a longer death, not live a longer life.
Don't know what I mean? Visit an assisted living facility or a nursing home, and you will see what it is like to die a longer death, not live a longer life.
And let's not forget the one just about everyone will get if they live long enough: dementia.
Never, ever assume that your doctor is recommending a treatment that is cost efficient. That isn't their stated role, and most are unwilling to even think about the balance of cost and care. It is up to you to think it out.
I would be unwilling to survive a disease in chronic pain or distress with no remaining funds to care for myself. That doesn't sound like living to me.
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@Cathy
So true.
As a healthy person with a fresh cancer diagnosis, I'm wondering where that line between a longer life vs. a longer death is going to be.
Of course I'm thinking about it more now, but that line is there for everyone.
It's both wonderful and tragic that we have the medical means to keep people healthy and/or alive longer than ever before, but at what cost, both financially and in terms of quality of life for us and our loved ones?
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@Goldbug We don't know how we will really react to a diagnosis that could kill us. It's possible we will be stoic but it's possible we will rage with all our might (and financial resources) before the dying of the light.
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