Waiting to Treat the Cancer

Critics of the health care systems of other countries, and of proposed changes in ours, decry the possibility of the government directing what health care we can have. They seem oblivious to the fact that insurance carriers are already doing that, with no public oversight whatsoever of the credentials of the watchdogs, the impact of the profit motive, or other details that would make government oversight a blessing by comparison.

Publicity for the Insurance Companies whose delays and recalcitrant responses could and very often do have lethal effects, should be made financially if not criminally liable for what are avoidable losses. Physicians are subject to malpractice litigation. Why not insurance companies. All grist for the single payer mill. Everyone should make sure to vote Democratic in the midterms next November. Impeach Trump and clear both houses of Republicans and we could get single payer in a year.

Consumers should know that in most states they can get expedited independent medical review through the state insurance regulator. Don't be afraid to escalate.

My husband would have gone undiagnosed with Stage 4 Prostate cancer for much longer if we hadn't paid out of pocket for a CT scan that Blue Cross denied for his back pain. That test only cost about $200 and the preauthorization for medications even after they knew he had cancer was horrific. The battle to get reimbursed for their errors was ridiculous. Their inept ability to deal with serious/life threatening situations was shocking to me as both an RN and customer for many years. They work well as long as you are not really sick with a potentiality expensive illness. Prior to the cancer diagnosis I thought they were a good company. As a provider with many insurance companies over the years they always responded quickly to my phone calls. As a customer it took writing letters to their government oversite agencies and cc to the NYT before I got someone in authority to solve the problem. They finally reimbursed us but then took no responsibility and blamed us for not getting proper preauthorization in the first place. Having worked with both private and public insurance programs the best and easiest for customers by far in my experience is Medicare. I no longer believe Medicare for all is impossible. I even cautioned Blue Cross not to treat patients so callously because all the anger which emerges with a terminal prognosis will be directed at them fairly or not. When the single payer system comes to be they will have no one to blame but themselves.

why don't you do us all a favor and publish the name of the 'insurance' company that took three weeks to make this decision. then we can vote against it with our wallets and our elections. simply pointing out the problem doesn't lead to a solution..

Having just read an article about the medical director of Aetna in California admitting, under oath during a deposition, to never ONCE having looked at a patient’s information while making decisions about whether to allow or deny coverage, my sense of outrage about the insurance industry is fresh. This particular article saddens me beyond belief, especially as it seems ever more likely that those in positions of financial responsibility about patients’ health will in no way be prodded to consider what is best for he actual patient, as opposed to their own bottom line.

the big C tends to scare people into 'do everything doctor !' but some cancers are slow growing. I've had skin cancers - BCCs - for over 30 years - I have regular 3-6 monthly checkups - had one removed from my back yesterday - followup checkup for 3 months time - I've had one melanoma removed - big bite out of my leg - caught early so no worries now I also have an enlarged prostate - pretty normal for males over 50yo - had high PSA result suggesting followup biopsy - but my friend who had the operation leaving him with dribbling incontinence and unsatisfactory sex suggested I seek an MRI instead - but cheapest quote is for $500 out of my pocket - so meh - most men die with prostate cancer - not caused by prostate cancer but some other reason - so I'm relaxed - I'll see how my PSA looks after next year’s annual checkup ...

He’s lucky to get approval for the transplant. Here in California, a major health insurance company is being investigated after an insurance company doctor admitted that he does not review patient files prior to approving or denying care.

I was at my doctor's office today. My chronic pulmonary problem has gotten much worse and I could not get ahold of my pulmonologist, so went to see my allergist. About a month ago, I had been put on albuterol to be used in my nebulizer - need to get the congestion out of my chest. I used this 2 times daily as prescribed. But about 10 days ago, I was having an unproductive cough, having a great deal of trouble breathing, even with supplementary oxygen, and had a raging sore through - painful to even swallow. And that unproductive cough that was interfering with my sleep. I finally figured out that the albuterol was causing the sore throat and the cough (looked up side effects), so I stopped using it. In the past, I had been given Xopenex, a levalbuterol with fewer side effects. So, after the doctor confirmed my suspicion that I had a TON of congestion in my chest that must come up, I asked him about a prescription for Xopenex. He told me it was becoming virtually impossible to get a prescription plan to pay for this - even with appeal directly from the physician to the pharmacist. He said it was taking up so much of his time, he simply was not able to fight with the insurance companies over this. But he took pity on me and did call my local pharmacy to see if ExpressScripts (Tricare for Life ) would pay for it. Amazingly, they would for $11 co-pay. What a shame doctors are no longer making our medical decisions about treatment. BTW, it's working.

Once again I'm glad that I have Kaiser Permanente for my health insurance and as my care provider. Whenever we've had to discuss a course of treatment (more for my wife than for me), the doctors have presented the options and clearly stated that what they did was a decision made by the doctor and the patient, never by a remote administrator. When surgery or other treatment was needed quickly, it was always available, never delayed. This is how medical care should be, and is at Kaiser and similar integrated health systems in the US. I don't know which way health care will go in this country but we couldn't go far wrong by adopting something similar to Kaiser and other like systems.

Wow! Health Insurance companies denying care seems out of place. Hope it boomerangs in patient's benefit, not too late for some hope, and effective treatment. This behavior is, unfortunately, not an exception.

It’s an admittedly cynical viewpoint, but I can’t help wondering if the insurance company was delaying their “review” long enough for the patient to die before approving a half-million dollar expense.

Several commenters have suggested that we should publicize the names of insurance companies who appear to be deliberately delaying approval for or otherwise interfering with treatment in order to save money. Here's one that should be publicized: Express Scripts, the mail order pharmacy used by Tricare. Not once, but twice in the last year, Express Scripts called my very elderly mother in law to notify her that there was a "problem" with her medication refill and they were "contacting" the doctor about it. Then, silence. Until my mother in law realized she was out of medication. In both cases, the prescriptions were 1. routine refills (not a new prescription); 2. critical for my MIL (Eliquis for afib and Carvedilol for heart function ); 3. and nothing, absolutely nothing had changed between one refill and the next that should have caused them to ask the doctor, a busy cardiologist, "oh, did you really, REALLY mean it when you said you wanted her to have this med? Well, please authorize it AGAIN, even though we have a valid prescription on file from you, just because we said so." What possible reason can there be for this nonsense, other than an attempt at cost-saving for Express Scripts? At the expense of an elderly woman, who wouldn't understand what was happening if she didn't have family to run interference for her.

It shocks Americans that every headache or joint pain cannot be granted an MRI, that end-of-life care should not be 10 days in an ICU. On the other hand- reasonable 'best care' should not be arbitrarily denied; medical necessity used to be the ultimate standard. No more. Private for-profit insurance cannot- has not- controlled cost nor screened for unnecessary treatment. A national health plan has the advantage of largest risk pool, everybody in (no freeloaders), economies of scale and wise epidemiology to guide utilization. Instead of wasting billions on administrative overhead & CEO salaries- let's get that money back into clinical care !

Whether insurance is private or State, whether For-profit or Non-profit or Single-payer: Deny-Delay-maybe-Approve will not go away unless public discussion lifts the lid on how decisions are made and how priorities are set. As a society, We need to find a way to ensure that insurers are not making medical decisions for us implicitly — deny, delay, maybe then approve, but too late. With private insurers, profit is at play. With single-payer, capacity and access will be at play. Both access and approval are critical and need to be addressed openly, now.

My heart goes out to your brave patient, family and physicians. Reading the step by step diagnosis, treatment, recurrences of cancer, the difficulty of chemotherapy and stem cell transplantation illuminates the challenges you all face. Our insurance situation must be addressed, improved. Thank you Dr. Sekeres for reminding us of the struggle and for your kindness as a human being.

This will sound callous and ridiculous because of our culture's absurd refusal to countenance the fundamental biology of natural selection. But we ought to encourage lawmakers to provide the Cleveland sports-loving patient in the article less treatment, not more. I say this as one who has lost his entire family (mother's side) to cancer, mostly because we carry one of the worst cancer-causing genetic mutations. The drive to cure diseases and seek new treatments is a good one. But we ought to reconcile ourselves to the brute facts of random mutation and natural selection. One day I will surely get cancer just as my family members did, and I have no intention of undergoing the highly toxic, systemic "chemo" cocktail therapies that do not "cure" the condition. Nor will I procreate and pass on my highly flawed genome. (Yes, perhaps I will change my mind on these matters, but I highly doubt it).

I worked in a cancer center where I had to interact with health insurance companies daily. It seemed that they operated on a strategy of wearing down their subscribers and medical providers with long call center holds, inadequately trained reps, unacceptable turnaround time frames for authorization requests, antiquated medical policies faulty bill processing requiring costly rework, inconsistent information to patients about network status of providers. I would love to see a congressional investigation and have the regular medical provider employees who deal with insurance tell their horror stories. If one could quantify the cost to medical providers in dealing with the flaws of health insurance it would send shockwaves. The human cost to patients waiting to have treatment and tests is perhaps less quantifiable but tragic. There is a huge need to require better standards of response and punish failure,

My sister was diagnosed with acute lymphoblastic leukemia after five months of tests and a first hospital stay. After her diagnosis, she was transferred into a specialized ward, where she underwent treatment very similar to that outlined in the article. She finally received her bone marrow transplant three months ago, she is home, and she is being monitored and tested weekly at the hospital’s outpatient site. It was, and is, a very tough road for her and our family. I can only imagine what it could have been like if an insurance company had had the right to decide if and when the transplant would occur. Thankfully, that was not our case. My sister lives in Italy. All procedures, hospital stays, and medication was covered by the national health system. Now that she is home, she has to pay a copay on the medication she gets at her neighborhood pharmacy. No insurance company should have the right to decide if, when and who gets treatment. Everybody needs access to the best possible health services, and money should not be a barrier. I’m so glad my sister didn’t have to be subjected to the weeks of uncertainty about health coverage while fighting such a debilitating disease. It is a shame that a country like the US will not treat its citizens’ health with the same level of respect and care Italy does.

Those who still mistakenly believe that instituting universal healthcare in this country have never had to deal with an American health insurance company during a serious illness, such as cancer. I'm dealing with my third insurance company in four years. Thanks to skyrocketing premiums, I've had to change companies nearly every year over the past five years. Changing insurance companies means changing doctors multiple times, so there is no consistent care whatsoever. During that time, I've survived one bout of cancer, but have been under the care of three different oncologists. I'm currently searching for a fourth, because now I'm being tracked for the possible development of a different cancer elsewhere. My current company, Oscar, has so far not been reachable by phone. Although it boasts that patients can "talk to a doctor in 15 minutes," it doesn't say that they'll put you on hold for a minimum of 30 minutes before you give up and try their messaging service instead. Oscar also takes more than 48 hours to reply to messages. Six weeks into the new policy, Oscar still has been unable to tell me which oncologists I'm allowed to visit, despite multiple communications. Thanks to Oscar, I have now missed my six-month follow-up, and am still waiting for approval for follow-up with a different specialist. Talk about death panels! Everyone knows that time is of the essence in treating cancer. Insurance companies deserve to be eliminated from the healthcare system altogether.

This story is terrifying. CML, 2 transplants 11 years apart. Part of me believes that if it came back a third time I would just throw in the towel; reading this, that a greedy company would make that decision for me, hits too close to home. I’m 40.

Some days I’m just so ashamed of our country.

Patient care cannot continue to be compromised by insurance companies. As a physician I have pleaded with insurance company representatives to get medications, treatment and tests approved for my patients, I have spent hours on the phone and filling out forms. The situation is untenable. Typically the insurance representatives that handle such decisions are not medically qualified to do so. I hope this patient's long term health and survival was not compromised by his insurance company.

There should be a mechanism which accelerates the process of getting "approval" for timely (and in many cases life saving) treatment. One way to assure this is to hold the insurance company responsible for their delays. Physicians and hospitals are frequently sued for delay in diagnosis or treatment, especially with cancers which can more difficult to treat as the disease progresses. Let's hold the insurance industry accountable too...

Is the issue one in which the insurer’s deliberation process is too long for a fast spreading cancer? If so, we as patients/caregivers, and future patients/caregivers, must join medicine to facilitate a change and fast. Was this an outlier case in which the utilization review process dragged along for reasons not yet revealed? If so, knowledge of the facts may be helpful to those who follow so that the results are different. From the column, it doesn’t appear that the recommended treatment was not approved for the patient’s condition or that the insurer refused to cover regardless of the circumstances. It does appear that the patient, on the basis of his disability, may have relied on public insurance (IE, Medicaid and/or Medicare). I’d hate to think that the standard for life saving treatment is that much different for those differently abled.

Whenever I read this type of cancer-related article, I feel pain and frustration because some cancer patients (even stage 3 or 4) in Turkey and Egypt are treated better by the protocol developed by American researchers (Cancer as a metabolic disease: implications for novel therapeutics by Thomas N. Seyfried, Roberto E. Flores, Angela M. Poff and Dominic P. D’Agostino https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3941741 ). This protocol requires severe ketogenic therapy (glucose/ketone ratio one or below) and hyperbaric oxygen therapy in order to starve and kill cancer cells without chemotherapy, radiation or surgery. This group of researchers believe "leukocyte fusion theory of metastasis, Pawelek JM, Chakraborty AK., Department of Dermatology and the Yale Cancer Center, Yale University School of Medicine) and try to inhibit gultamine in order to prevent metastasis of cancer cells to move to other healthy part of the body because (1) metastasis occurs by the cell fusion of a cancer stem cell and a macrofage (2) that live on glutamine as energy source). Their cancer treatments have saved cancer patients in Turkey and Egypt, but not in our country because FDA has not approved because this is the multi-factor therapy for one disease. These therapies don't require money much (good for patients but bad for doctors and hospitals).

Please name the insurance company who delayed treatment. Once customers have an idea of what these abominations insurance companies do, perhaps we can then have an adult conversation about implementing universal single payer

I believe the insurance company delayed things on purpose, hoping the patient would either die or grow too sick to receive a transplant. Honestly, other than incompetance, what other reasonable explanation is there? As for the half-million pricetag--I'm willing to bet the insurance company would pay much less as a negotiated cost. As to the patient's age--when first treated he was THIRTY. Anyone think that's too old to be treated for cancer? If so, then I have some very negative wishes for what you experience in your future.

A for profit system (the American way) is inconsistent with the Hippocratic Oath our doctors take. Maximizing profits is the new oath and doctors have bowed to it. Patients suffer and the health care system is enslaved by it. Has there ever been consideration of a nonprofit health insurance system? And if not, tell me why my local health insurer has million dollar salaried executives and 3 corporate jet at the ready 24-7.

You say there's a need for checks and balances when it comes to spending on expensive operations, but that's not when checks and balances should be a factor. The time for that is when the cost of such operations is calculated. There were no materials or amount of time that would cost half a million dollars; it was all about charging what the market would bear, but medical companies are known to be good at obfuscating that with talk about research. Costs shouldn't be considered when it comes to life or death procedures, and doing so seems even more inane than usual at the moment, when we have a president who wants to spend as much as forty times the amount of the procedure you dealt with on a needless, unwanted military parade. completeandtotalloser.blogspot.com/

I don't know if this patient was employed, but if he was, delays involving insurance companies' approvals or payments should always also be addressed through the HR Department of the company contracting with the insurer. Employees need to make HR aware of what they are experiencing and typically these situations are corrected far sooner. Employers are the ultimate payers....they are either paying premiums for employee coverage through fully-funded health insurance plans or they are paying the medical bills themselves through self-funded plans that the insurance companies are contracted to simply administer. If the patient was not employed, call a reporter and get on a 3-way with the insurance company, making them aware that you have a reporter on the line, doing a story about the delay. Fight fire with fire. A 12-week wait is ridiculous for this diagnosis and progression and what this patient had already been through.

I would have opted for no cutting or bleeding with radiosurgery.

More than anything, I wonder why a bone marrow transplant costs half a million dollars?

I am wondering whether this patient's testosterone levels can be restored and managed successfully by injections, or oral supplementation, or if the hormone therapy is contraindicated during his bone marrow transplant or other cancer treatments. I well understand that urgent cancer treatment overrides hormone replacement, but am hoping that the additional psychological and physical burdens of his sudden and near-total loss of testosterone can be mitigated without delay as well. Oncologists, endocrinologists: can you respond? Thank you.

Another question is why does the bone marrow transplant cost $500,000? What would it cost in another country where there might be more limits on what the medical system can charge?

Three months -- HAA. I've seen head and neck cancer patients delayed by 6 months due to insurance issues

Shouldn't giving a patient their best shot at remission or recovery be a priority? That said, there should be a mandatory time frame (7-10 days) in such cases to expediently give approval - 3 months is unacceptable. What would have happened if approval was denied? Would an appeal have taken an additional 3 months? This might have negated any benefit from the procedure. Absurd

I would like to know what doing well means in this context, Dr Sekeres. As in is he likely to have a few more - or one more - year(s)? If the insurance company has the right to deny treatment that a doctor is recommending, I think that the parameters for denying treatment should be spelled out in advance: ultimately, when will treatment be denied? But that is too direct, and would make people angry. So the secret rules are applied to a patient at a point when they are at their weakest - and waste physician's time wrangling with insurance reps who are looking for excuses to deny payment. Bluntly, what this looks like is that because of the cost, there were delays meant to delay treatment until too late: until the patient was too incapacitated to benefit, or had died, or until the family gave up. But insurers want to have a defense for their stonewalling, so that they can claim they needed more documentation, or that their professionals needed to find convincing evidence that the treatment would help the patient. These discussions are "confidential" - but the physician is forced to advocate for the patient not because each situation is unique, but because when each decision is made in secrecy it protects the insurer. If insurers had to publicize their rational for refusing treatment up front, it would trigger a public discussion. This isn't in the realm of public health now because talking about the limitations of insurance-based access to medical care is verboten.

Since Britain's NHS has been in the news here after Trump's comments, I would love to know how this patient's case would have been handled under their system. Would he have gotten the bone marrow transplant? If he did, how much would it cost compared to in the US. I believe in Medicare for All, but an honest discussion of what the cost will be needs to be had.

No doubt, moving quickly against aggressive cancer is important and three months is a long time to wait to treat ALL and probably lowers the odds of a cure. But by how much? If there are no data to answer that question, I doubt that most insurance companies would act quickly on approving a procedure that can cost upwards of one million dollars. I have many serious concerns about the failures of our health care system where life and death issues result from insurance coverage denials and delays. This story however seems more ambiguous.

I think in an extreme case, a doctor has to go ahead with the procedure, and the paperwork of insurance reimbursement can be attended to later. This requires the approval of the hospital (assuming they have confidence in their medical staff’s decisions), and they know how to collect more effectively than a patient or his family knows how to advocate.

Left unsaid in all this though is the dilemma of how much are we going to spend on an older patient with recurrent leukemia who is still high risk for relapse after bone marrow transplant. In many countries, the idea of a bone marrow transplant wouldn't even be entertained for this gentleman.

Insurance companies have created the worst health care system in the world in this country. It is immoral and criminal. I think if insurance companies make these types of medical decisions (deciding who can have a transplant or an MRI or anything else), they should be subject to the same type of liability doctors are.

It is a fact that some insurance companies are routinely denying 30% or more of insured procedures--with no legitimate basis for doing so except the expectation that ultimately they will not pay some of them. It would be understandable to delay approval for some treatments which are experimental or not 'gold standard' however the procedure you discuss is the gold standard in such a case. Just more anecdotal evidence that our current health care system (not just insurance and payments but really from top to bottom) needs further and substantial renovation rather than more of the same. A balance needs to be struck between the profit incentive which fuels our innovation and the mandate for care which drives us all. The conflict between those important principles is the nexus at which we will win or lose this battle to make health care affordable and available to all.

My insurance company denied a breast MRI, even after a suspicious finding on a mammogram and ultrasound, a diagnosis of Li Fraumeni Syndrome, and a previous breast cancer. The denial was in clear violation of two separate internal policies governing MRI approvals. The subsequent appeal (ultimately successful) delayed the MRI by several months. MRI led to a biopsy, and the biopsy led to another breast cancer diagnosis. Did the delay affect my chances of survival? There's really no way to know. If doctors delayed diagnosis/treatment the same way insurance companies do, they could be sued for malpractice. But insurance companies are protected from liability for personal injury claims by ERISA. This should change. If insurance companies want to make medical decisions, they should be subject to the same potential liability as doctors. Perhaps this would make them consider their decisions more carefully. Until then, we're all at risk for injury at the hands of one of America's biggest industries. There is no reason health insurance companies should be exempt from liability for the injuries they cause consumers. Change the law. It can be done. Thank you for raising this issue. Best wishes to your patient.

Checks and balances, or insurance executives assuring their bonuses?