H

ealth insurers in the United States “keep on giving” when it comes to dishing out outrage to Americans who have already been battered by their denials for coverage.

Here’s the latest: Dr. Jay Ken Iinuma, the former medical director of Aetna for Southern California, admitted in a deposition that he routinely did not review patients’ medical records before denying appeals for insurance coverage. The news went viral, as did the news that Aetna defended Iinuma. The story has prompted an investigation by California’s Department of Insurance.

This case revolves around 23-year-old Gillen Washington, who has a rare immune deficiency. He sued Aetna because the insurer denied coverage for an infusion of intravenous immunoglobulin, which helps treat immune deficiency. His suit alleges that the denial nearly cost him his life.

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Washington’s story deeply resonates with me. Beginning in late 2013, I helped my first husband, Ahmad Khoshroo, battle advanced bladder cancer. I spent many hours on the phone with Blue Shield of California, first trying to understand its appeal and grievance process, and then trying to reach a person on the phone to discuss it.

Much of this time was spent on hold listening to an endless loop of Vivaldi’s “Four Seasons.” After multiple denials of our appeal to have Blue Shield of California cover the cost of an investigational drug, the company made it difficult to reach a real person. The classical music it provided, probably meant to soften the wait, ended up further infuriating me.

This time spent on the phone and on hold was time I could have spent with Ahmad. He died in April 2014.

Washington’s suit brought to light something that patients and their doctors have long suspected: that denials of complex or nonroutine care seem to be standard operating practice. Such requests may not receive serious medical consideration from a relevant specialist.

We buy insurance and pay high premiums, often for many years, with the expectation that if we get cancer, get into a car accident, or are diagnosed with a rare disease, the insurance will be there for us.

Blue Shield of California was there for Ahmad — until it wasn’t. The company covered various standard protocol chemotherapies that did not work at all. It willingly covered the genomic sequencing that identified a drug for kidney and pancreatic cancer as one likely to work.

But then it refused to pay $10,000 a month for everolimus (Afinitor) a drug the FDA had approved for kidney and pancreatic cancer, but not for bladder cancer. During the three months we spent arguing about the drug with Blue Shield of California, we paid for the drug ourselves. It was the only treatment that actually shrank Ahmad’s cancer.

We buy insurance and pay high premiums, often for many years, with the expectation that if we get cancer, get into a car accident, or are diagnosed with a rare disease, the insurance will be there for us.

I learned from the denial letter the insurance company sent us that the medical decision to deny coverage of the drug was made by an oncologist, but not one who specialized in urologic cancers. I’ll never know if he actually reviewed Ahmad’s medical records.

What was most frustrating was the several months we spent submitting documents from Ahmad’s doctor — all supporting the use of everolimus — and then waiting, and waiting some more, only to have the coverage denied. This was time that Ahmad didn’t have. Why not simply deny coverage quickly?

I believe that insurance companies draw out the process — at least in California — for two reasons. In the case of patients with late-stage cancer or other life-threating diseases, an extended decision making process may mean the patient dies and the company doesn’t have to be the bad guy that says “no” — for these patients, deferral is essentially denial. The other reason for foot dragging is to extend the time before insurers are obliged by law to inform patients and their families about the state managed care department and the option to appeal.

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This state regulatory body, the Department of Managed Health Care, overturned Blue Shield’s denial for Ahmad’s drug in just three days — yes, a state agency issued a decision in three days — after we had waited months for answers from Blue Shield of California. This reversal required Blue Shield to reimburse us what we had already paid for the drug and to cover it going forward.

When patients reach the appeal and grievance phase of dealing with their insurer, they are often at their sickest. Their family members are at their most exhausted and emotionally vulnerable. As insurers follow protocol, review forms, and send calls to voicemail, people’s lives hang in the balance. Someone, somewhere is suffering or dying as they wait.

It is a cruel burden for an insurer to issue a denial after patients or family members have sent a small mountain of paperwork and spent hours on hold — no matter how soothing the music. It is crueler still when we learn these denials may often be based on perfunctory reviews.

Renata Louwers is a writer, volunteer patient advocate with the Bladder Cancer Advocacy Network, and co-founder of Months To Years.

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  • We need an expose on this topic. Ask anyone with a chronic illness, cancer, or rare disease… this is usual and customary for patients who are already stressed with the problem of illness. I wish I had more time, I’d do the work myself. I hope a motivated journo can take this more deeply into investigative territory. Thank you for cracking open this overlooked but huge topic, Renata

  • Sorry but have to make a top line reply since the STAT software is TERRIBLE in terms of replies
    I have been one of 3 UNPAID advisors that assist the US Senators in deciphering the healthcare industry and the various claims made by stakeholders. Basically, I am there to make Medical jibberish into actual understandable practical information to allow them to guide the Congress in decision making without the spin that lobbyists create to cloud the facts.

    With that as background let me continue where I left off or to comment on others added points
    First off the issue of InsCos being cash cows and that the CEO pay is the real cause of the healthcare expenses in the USA is so absurd that it BARELY needs comments on but since it comes up I must.
    Since the US spends literally $3 TRILLION dollars does anyone HONESTLY think that a few million even a HUNDRED million for C-level executives, if put back into the system, would even ripple the surface?
    I get it that as typical people who earn less then $100K per year and can barely afford tissues the CEO salaries SEEM to be the causative issue that if pulled out would fix everything. Add to it that POTUS candidate Sauders built an entire platform on lying to the public to that exact concept.

    With that addressed let’s move on then, if the salaries of the C-Levels are not enough to make a difference WHY do so many foolish Americans think that a single-payer system will, therefore, be less expensive then the current system? Is the VA cheaper than the commercial system is USPS cheaper than UPS? Is the $5 wrench to fix the Navy carrier a better value then Craftsman?

    The rationale sometimes comes to saying “well the UK runs its system from the Gov so if we follow them then it has to be better”
    NONSENSE!!! The NHS (UK’s version of Medicare for everyone) is a MISERABLE nightmare and is QUICKLY going to need massive adjustments or it will collapse under its own weight.
    There is NO country with the lifestyle issues that we have that has been able to resolve a working healthcare system any better than ours.

    The issue is WE use too much care because we refuse to be proactive and prevent disease.
    Sure there are plenty of diseases we have that are NOT our faults BUT 80% of all US diseases are lifestyle dependant and are preventable but we “elect” to avoid the alternatives needed to stay healthy.

    SO when it all boils down we have a system that is spending TOO much money on stuff that it can’t raise the revenues enough to be able to pay for and yet is criticized for trying to smooth the butter across as many bread slices as is possible
    When I see laypeople pointing fingers on one aspect of care over another the ONLY thing I realize is the media has done a FANTASTIC job of clouding the facts and agendizing their spin on what they want society to blame and to act on.

    FACTS be facts the US needs to raise premiums in order to pay all the bills for all the sick people who are asking for services to be paid for. However, as was mentioned the insurance SYSTEM is NOT owned by the public it is owned by the employers.

    How many of you are willing to take pay cuts in order to have better medical? How many of you are willing to take pay INCREASES to then have NO coverage and buy their OWN coverage by yourselves?
    If you were allowed to pay for your OWN insurance with before-tax dollars would you allow your boss to stop your employer-based policy?
    The Senate surveyed 25K people and less than 5% were willing to take on their OWN healthcare costs themselves (thru their own policies and copays and deductibles etc)
    So it comes to having someone ELSE take care of all of our needs and expecting that someone to belly up everything so as to have no out of pocket AND no responsibility.

    To answer the authors premise YES this is NOT just Blue and Aetna of Cali it is UNIVERSAL so it is not a conspiracy it is the way things work. EVERY InsCo has roadblocks in place to reduce out of pocket payments for care ESPECIALLY if the disease is a terminal one

    If the issue is a fractured bone or even a heart surgery it is FAR easier to get them to agree then if the issue is cancer or AIDs or some other terminally approachable disease.

    It is NOT that they don’t care it is that they know they can NOT win. The person is going to die in MUCH shorter time than the rest of the society and that means a TON of money in a short period of time to NOT then have decades of no claims to recover the losses
    There is NO way for them to mathematically balance the tables. They can’t raise premiums they can’t lower usage and they can’t adjust claims so what is left?
    Don’t reply “but I pay for it” and I, therefore, have aright to collect. Actually, you don’t and even if you did you don’t pay enough. If we all paid the PROPER amount of the care we would EVENTUALLY need then it would be fair to EXPECT all claims to be paid in a short order and in fact, they would be.
    It is like asking Mercedes to provide you a car at Walmart rates! Sure you feel good about asking but how can it happen over a long period of time? They could sell a few that cheap as a special deal but they can’t do it day in and day out without going broke. The US wants Mercedes care but is ONLY willing to pay Walmart rates for it.

    Everything MUST be sustainable and the healthcare system in the USA is NOT (but it isn’t in MANY other countries as well)
    IF we want to learn how to do it then we need to look at Israel and Singapore. They are the only two places that have it figured out
    They start with EDUCATION and philosophy and it all flows from there
    In Sing, everyone sees sickness as a let down to their society. If someone gets sick they do everything in their power to resolve it FAST because to them unless they are a productive part of society they are personal FAILURES. They are THANKFUL for society to help them get well and their entire lifestyle is based on remaining well and staying well. They don’t eat crappy food they don’t drink alcohol in excess they rarely use tobacco products. They exercise several times per DAY they even take time off during the day to meditate and to relax and focus so as to not stress their mind body and soul
    When they go the doctor they follow EVERY recommendation religiously and would never think of arguing with recommended care pathways. If a doctor says take these pills they DO.
    When they get sick all family members step up to help the person get well and if need be to help with things like nurses and assisting in therapy sessions
    This mindset is UNHEARD of here
    BUT they also have a totally affordable healthcare provision system and it is sustainable even with new advances in care that are still to be devised and probably expensive
    Remeber drugs are drugs and YES the USA refuses to federally negotiate for lower prices but the costs are global so even though the NHS pays less for CAR-T therapy it is not free to that system either and the commercial InsCos DO negotiate so they get the best deals they can so the US is similar to the rest of the world.
    We are not getting ripped off because we are the USA the fact is new drugs are costly and they use raising ALL drug costs to help cover those expenses. It is NOT that an old drug got expensive it is that NEW drugs cost too much if not offset by old drugs getting more expensive.

    Yes the USA pays a LOT for research but that money is NOT accounted for in terms of healthcare costs it is taxes being spent on NIH CDC and other programs

    We need to decide EITHER we accept less care OR we accept more responsibility and lifestyle changes but we can’t go like we are spending everying that we think we can until it runs out
    I am NO InsCo suporter BUT I do undertand that we are asking them to do the impossible
    They have even shifted to earning money from OTHER then patient care services to offset our massive use and still that hasn’t helped. Blue owns MOST of the vision care companies and most InsCos own things like surgery centers and emergent care offices to hopefully make money so they don’t need so many profits from premiums to keep the boat floating.
    Reality they are in business to provide their owners with dividend checks you can be one of those owners if you think they are so wealthy shift your 401K to buy InsCo stock and see how well you do.
    The point is but the ravenous use of medical care eats up far more then they can offset
    We need to stop looking like children with our hands outstretched EXPECTING all care at no cost. It doesn’t work that way.
    Dr Dave

  • I have been in surgery for over 3 decades now and specifically only cancer surgery. I can tell you that it is WIDE spread to suggest this is only Blue or Aetna is tantamount to blinders on a horse. Yes the other horses are right there but no one wants to see them
    The reality is that more people need to learn the rules of the game. First off it is NOT your money that is paying the InsCos premiums in MOST cases it is the employer’s dollars. If you do buy an individual plan and that is rare in this day and age since even if you do have a sole plan the US Gov is more then likely paying more of the premiums then you do. With that aside though the issue is reading the insurance policy to know what is and isn’t covered and why hopefully before you agree to it.
    I was diagnosed with a super rare form of cancer in the late 90’s and in 2006 it went into high gear requiring surgery chemotherapy and the entire spectrum of my medical colleagues (radiation, medical intervention, and surgery)
    I was finally at the end of the rope when we discovered a drug that might help but was not approved as so many others have heard. After an initial set of appeals, it was clear that contractually the InsCo was NOT obligated to pay. This has NOTHING to do with Medical directors or nurses reviewing claims it was all about the actual contract that I entertained with the InsCo when I bought the plan and even though I was clear on its limitations I still bought it. I was on the hook for $3K per DAY and paid that for several YEARS until the FDA and the drug company who makes it agreed to allow it to be used in my type of cancer.
    As soon as it was approved the InsCo paid 100% and to this day still does
    Now getting to the point of this article
    Is it right to ask an InsCo to pay for either something they never agreed to in the first place or is an experiment in care since it is not approved by the FDA for such a use?
    I can’t specifically answer the philosophical questions BUT I do know that my partners and I employ 4 FULL-time RN’s who do NOTHING all day long but fight for preauthorizations for patients. The typical RN we employ earns $65K per year EACH. You do the math and see why healthcare costs what it does. These gals NEVER see patients only their paperwork.

    The FIRST thing I want every patient to know is that by LAW they are entitled to a paid for treatment advocate. The InsCo MUST provide you with a specific person with direct access (phone number email etc) to help you navigate the waters of claims and authorizations.

    Wasting time on hold with the general queue of customer service reps is a futile effort especially if you are very sick. An advocate is paid for by the InsCo BUT works for the patient.
    They know the entire process of the InsCo they know direct connections to advisors and 90% of the time they are nurses themselves so they are on page when they need to discuss matters with your physician and the medical team as well as the nurses and “doctors” at the InsCo

    We tell EVERY patient the day we diagnose them to request an advocate immediately. This makes OUR lives much easier as well. We can use your advocate to leverage to get things approved BUT realize that no one can make a contractual denial into an approval
    The difference between a contractual denial and a medical denial is HUGE
    The contractual denial is a written agreement that specifies what will and won’t be covered at the time the contract was signed
    An example is there is NO way to get the InsCo to pay for a swimming pool in your yard REGARDLESS of how medically sound the idea of hydrotherapy seems. There are even more obvious ones like your policy states you are entitled to 30 Physical Therapy visits. At 31 they exercise thier contractual right to stop paying. I can write 300 letters and provide 200 journal articles on the value of 31 visits but contractually they agreed and you agreed to 30 and that is IT until next year.
    Medical denials are different they come from things NOT typically established at the time the contract was created. If you have a policy that you have had for years the likelihood is that new technology won’t be listed so it is up to a medical review to determine if the technology is NOW going to be included or not
    This is the whole issue with Aetna they put a rare disease treatment before what they THOUGHT was a medical review only to find that it was only reviewed by a team of nurses and NO physician ever actually reviewed it for value
    Use my example as an example. It was originally denied as a contractual issue. There was no FDA approval for the drug in question when I needed it so it was denied. Only after sometime when the PharmaCo applied to the FDA for an expanded use and got it did the InsCo pay the drug use. I was TRULY pissed trust me at $350K per year out of pocket that I felt they should pay for it was disheartening BUT after some review, I did see their point. It is NEVER about a case by case situation it is all about precedent
    Does an InsCo want to pay for that drug in that instance for ALL claimants forever?
    We need as a society to adjust our mindset that getting “someone else” to pay for our medical needs is financially impossible. If EVERYONE who is sick were to get EVERY treatment, drug, procedure, technique, etc paid for simply because… there would be NO InsCo left in business because premiums would be SO high that NO ONE could afford to buy coverage and we would all be broke from medical costs.
    We need to realize that there are going to be limitations and even if we shift to some other way of paying medical costs there will STILL be limitations. I hear from so many people that in the UK for example that their NHS pays for every need. That is TOTALLY untrue. They have a very different process of regulating things but it is NOT a free-for-all and that anything that is needed is paid for
    Medical technology is advancing faster than ANY other aspect of life short of electronics and software and with that, there HAS to be some way to regulate it
    Get a Care Advocate and realize that for everyone to have some; some will not get all
    Dr. Dave

    • Thanks for reading and commenting. As a doctor, you were lucky that you were able to pay $3K out of pocket per day. Most of us can’t afford that.

      As for our insurance, yes, it was an employer-based plan. But I was unable to work for a year while my husband was very sick and so we were required to pay the entire premium for both of us out of our own pocket. This was about $1200 per month when we had no income.

      With regard to a health advocate, we actually did work with an insurance-company advocate/navigator for several months and frankly, she simply added another layer of bureaucracy and made everything feel more complicated. She would suggest things for me to do — like call this person. I would call them (and stay on hold a long time) and then I had to report back to her on the call. It made more rather than less work for me. And I knew more about navigating the system than she did. Maybe we just got someone who wasn’t very good — I don’t know but I wasn’t impressed.

      I would disagree that the $65K paid to your nurses annually is what’s driving the cost of health care. Rather, it’s the millions paid to CEOs of insurers and the exorbitant drug prices that are charged in the U.S. And the fact that there’s such an unintelligible/inefficient web of payors, networks, and so on is the reason you must employ so many nurses who do nothing but pre-authorizations.

      I’m not arguing everyone should have everything. I am asking why will insurance willingly pay for a treatment that doesn’t work at all but not pay for one that does work? Part of this problem (in cancer at least) is due to the shift towards personalized medicine and the idea that cancer is not best treated based solely on the organ of origin. It is time for the insurance practices to catch up with the science.

    • Thank you, Dr. Dave.

      It’s shameful how health insurers are blamed for the coverage, cost and availability of medical care. In no other industry do we throw such emotional reactions to products and services that we have not paid for and/or are not available to us.

      Compounding this attitude is that many, many options exist to pursue this care that is not immediately covered. Not to mention how many of our health issues are, at worst, a direct result of our choices.

      Yet the author places blame on CEO compensation and drug prices as the main cost drivers.

      * Disclosure – I skimmed most of this page. (and the link I’m posting)

      ‘In no other industry does a buyer buy a service without knowledge of the cost and the relative benefit of the product or service.’

      https://www.forbes.com/sites/allbusiness/2017/06/28/what-we-can-all-do-about-rising-healthcare-costs/#67553a662f37

  • I’ve been through the same thing in a minor way with Blue Cross/Blue Shield. Fortunately it was an employer managed group plan and the health manager for the plan could over ride the decision makers at BC/BS. As he said, it’s our money, not theirs. I only called him as a last resort.

    Now I’m going through the exact same thing with Medicare. They refuse to approve an infusion chemotherapy drug for my husband because it hasn’t been approved for the type of brain cancer he has. The drug has been approved for that same type of cancer in the blood, in the torso, in other parts of the body, but not the brain, so in spite of affidavits by the neuro-oncology team that this is necessary (and that this cancer is curable with this drug) the denials continue. And insurance companies follow “Medicare guidelines.”

    So what should be about a year of infusion chemotherapy will now be a lot longer and if we were to pay for it ourselves we would be homeless by the time the treatments were finished. Our retirement savings allow us to be comfortable, but there isn’t room for that kind of major financial drain. We can afford reasonable emergencies/crises, but not something so expensive that will go on for so long.

    We so need a single payer health care system like the rest of the industrialized world.

    • Tommie,

      I am so sorry that you both are going through that. I agree with you about a single payer system. I also think that the insurance guidelines have yet to catch up with the science. This is the new approach to treatment: it is based on the genomics of the cancer not on the organ of origin. Yet the protocols are still based on approving a given drug for this organ or that organ. I hope that as personalized treatments become the norm that these rules will also start to shift. I wish you both well. Thank you for reading and sharing your story.

  • I work for a large health insurer, and have a few observations:

    1. What this Aetna medical director has done infuriates me.
    2. I wish the headline were more accurate and balanced. It should say, “Lives hang in the balance as AETNA MEDICAL DIRECTOR drags feet on coverage appeals.” It’s not fair to assume or suggegst this is widespread throughout Aetna, or represents behavior of other insurance companies.

    • BD,
      Thank you for reading and commenting. Yes, the Aetna story is infuriating. I must disagree with you about your headline suggestion as in the case of my story it was Blue Shield, not Aetna. So we now have at least two specific examples (the Aetna story and mine) of large California insurers taking a long time to respond to appeals for treatment from critically ill patients. I have simply heard too many stories from others patients that are similar to these. I hope you are right that this is not a widespread practice. But the anecdotal evidence I have seen suggests that it may be widespread. I trust you are doing all you can within your own insurance company to ensure timely responses. Thanks again.

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