Costs of Cancer Treatment: the elephant in the examining room

  • 24 January 2014

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Just as oncologists don’t like to bring up intimacy issues or spiritual matters with their patients, these same doctors are not particularly eager to discuss financial aspects of treatment. A 2007 article in the Journal of Clinical Oncology presents the results of a survey conducted by the authors at Sloan Kettering. They conclude that miscommunication between doctor and patient is likely due to doctor reluctance to raise the subject.  I doubt the results would be any different some seven years later.

Let’s face it: financial planning is not a sexy topic for most of the doctor populace. In fact, I believe many patients would guess that if they brought up the issue, their oncologist would refer them to a specialized staff member. After all, oncologists are trained in the science of treating cancer, not socioeconomic predictors.  Add to this the limited time an oncologist can spend with a patient, and I see a perfect storm.

Still, treatment affordability looms particularly large among stage IV breast cancer patients like me. After receiving such a diagnosis–an off-the-charts shock to the body–we are told that our cancer is treatable, not curable (if our type of cancer is indeed treatable). And while the cancer may respond to drugs, we don’t immediately ask how much these miracle meds will cost us out-of-pocket. We have more urgent questions on our minds: survival odds, side effects, and range of options. Money matters end up as background noise, to be investigated later after the initial shock has worn off, and best left to the experts in the insurance industry and the financial gurus at the hospital.

Both the oncologists with whom I have interacted did not discuss my finances. The one who delivered the unwanted diagnosis told me if he had the resources, he would choose to drive the 430 miles round trip to get cutting-edge treatment at a leading hospital. He did not ask me if my insurance would cover that hospital or if I had resources to travel that far and that frequently. But he did give me the option of getting standard-of-care treatment at a local hospital.

Fortunately, I had the resources and friends in the area where the leading hospital is located. Fortunately, that hospital happened to be an in-network provider in my PPO and paid major costs after my deductible and maximum out-of-pocket costs were reached. Fortunately, I qualify for a clinical study where I get the drugs free of charge, although insurance picks up the costs of constant blood tests, regular and frequent scans, and nurses’ and doctor’s labor and supplies. Those are fortunate circumstances that come together for a trifecta in my case. But even this “trifecta” isn’t perfect as I struggle to continue with frequent and long drives, causing wear-and-tear on the body as well as the car.

The hope is that the Affordable Care Act will help with this financial gap, but it may not cover providers in major areas that offer expensive care and clinical trials that local hospitals can’t. Time will tell if stage IV cancer patients will benefit in general from the new law.

In the meantime, resources exist to help those who are drained and stressed out by financial trauma, such as:

Patients deserve to have their financial concerns addressed. It’s stressful enough to get a cancer diagnosis, without adding money matters to the mix. As more doctors become aware of this issue, I believe change will happen. As with most things, it starts with education.

If you or a loved one has had cancer, did the oncologist(s) address the financial aspects of treatment with you? If so, what did they recommend?

  • http://www.facingcancer.ca Catherine

    Financial issues. Oy! What a good topic to bring up as we talk taboos. This is a huge one. When I didn’t have insurance coverage, my only option was either to pay huge out of pocket or have my ovaries removed. Unbelievable to me. This is a big issue.

  • http://life-Cise.com julie goodale

    Good post – such an important topic! When I would talk about the importance of the ACA (flawed as it may be) with people who have never had a serious health issue, they were always stunned and inclined to think I was making things up when I spoke of the financial strains of illness. Thank you for raising this issue.

  • http://janhasak.com jhasak

    That’s incredible, Catherine! I can’t believe you were faced with that Hobson’s choice. Thanks so much for leaving your insightful comment on a subject that should be anything but taboo. XOX

  • http://janhasak.com jhasak

    Julie, that’s so true about people not understanding the financial strains of those with a serious pre-existing condition. I try to educate as many as I can about the importance of addressing financial concerns. Thanks so much for your comment and for engaging people in discussions surrounding the ACA. XOX

  • http://Audreybirt.blogspot.com Audrey

    Oh my goodness, this is so challenging to cope with. We are so fortunate to have the NHS, even with its imperfections. I do hope that the new bill supports you and others like you Jan. it seems cruel not to. My thoughts are with you. Audrey xxx

  • judy

    I’m a physician, and a breast cancer veteran, and I treat patients in a community health center where most had no insurance, until the ACA. Luckily, I have good health insurance–currently, and it covered my cancer treatment and my subsequent hysterectomy due to tamoxifen. But, my patients, until January were forced to cobble together some coverage with medicaid or free care. But, I just saw a woman who works for the state health exchange, and the insurance she has has a high deductible and very high co-pays, and in states where there is just one private insurance, they are cutting costs by creating networks that exclude many hospitals. I wonder if my private insurance will start to create these networks soon. The ACA is very much needed, but as long as private insurers are in the mix, they are “back stabbing” the ACA by putting out products that limit networks, have high copays and in their own way, limit access. And no, none of my oncologists, surgeons, etc, ever talked about cost. I have lymphedema, and most of the cost of treatment and garments falls to me. Thanks for addressing this. As physicians, we don’t like to talk about cost, but we need to be aware. As patients, it’s our reality to navigate the health insurance or lack there of.

  • http://thesarcasticboob.com Scorchy

    This is a very important topic. And, honestly, hits just about every socioeconomic level. I am compensated well and have a blue ribbon insurance policy and I was blindsided when, at year’s end, I tallied up the costs and realized that thousands of dollars in co-pays and transportation left me with an empty savings account and borrowing from my retirement account. Because my breast center is part of a hospital, billing is complicated and I learned (early on enough) that if I had blood tests and my monthly shots without an office visit attached to all of that, my co pay went from $30 to $150! All of the prescriptions, bus and taxi rides (I live in NYC), and office visit co pays added up fast. It can be overwhelming. And the only thing my oncologist ever said was “Cancer is so expensive.” Yes, it is. And physicians needs to be aware of this and talk it over with their patients. It opens the door to a complicated and vast set of variables that can mean the difference between the best of care to no care at all. This American health care system sucks and no one should be at the mercy of a for-profit company for the sake of their lives. Thank you for this post.

  • http://www.nancyspoint.com Nancy’s Point

    Hi Jan,

    This is such an important topic. My answer to your question is “no”. My oncologists never once brought up the topic of finances. I am concerned about health care disparity in the US and other places as well. I believe quality health care is a right. I am hoping the ACA is hugely successful. I know it’s not perfect, but I do believe it can be tweaked as we go along. I’m so glad you have access to such stellar care, but I also empathize with you on hard it must be on your car and yes, your body. Thanks for addressing this topic. And thanks for sharing all those resources.

  • http://janhasak.com jhasak

    Yes, Audrey, you are fortunate to have the NHS behind you. Cruel is a good word to describe how life and society can conspire to sting us in ways we don’t expect. Thanks as always for your comment. XOX

  • http://janhasak.com jhasak

    Judy, thanks very much for your take on this issue from your unique perspective of both physician and patient. I absolutely agree that private insurers are, at least in some cases, sabotaging the intent of the ACA. Someone who works for my state health exchange told me I should be covered under some provision, but when we looked further, we couldn’t find a solution. I would be confined to local hospitals with sub-par treatment. I, too, have lymphedema and agree that most of the cost falls on the patient. We are working with Congress to get Medicare to cover the garments, and many private insurers follow the example of Medicare in determining coverage. For more information on how you can help, visit http://www.lymphedematreatmentact.org. Physicians do indeed need to be aware of the financial plight of their patients. Maybe nurse navigators can be educated and help out where they can. I truly hope so. Thanks again for your comment. xx

  • http://janhasak.com jhasak

    Scorchy, I am in the same boat as you, having blue-ribbon coverage but still paying extravagant costs, especially when transportation, meals and hotels enter into the equation along with co-pays, deductibles, and prescriptions. You are so right that we cancer patients should not be at the mercy of companies that only care about their bottom line. And office visit time is so limited that addressing complicated financial concerns in an examining room is out of the question. Thank you so much for your comment; we need to stick together! XOX

  • http://janhasak.com jhasak

    Nancy, I am hopeful also that the ACA can be tweaked so that private insurers cannot squeeze out of their ethical duty to be socially responsible. We’ll never have a perfect system, but at least we can try to minimize the potentially dire financial consequences of getting cancer. Thank you so much for stopping by and offering encouragement. It means a lot. XOX

  • http://none karen sutherland

    dear jan,

    I am soooo glad you wrote about the high cost of cancer care, that rarely gets discussed. another bugaboo of medicine not being committed to the needs of the whole person, the entire experience of having cancer and what it costs in terms of not just the treatment, the aftermath, but how MUCH it costs monetarily – which when we find out leads us to an unhealthy place of broken bodies and empty pockets. I do truly believe that all the financial havoc plays a part in our mental, emotional, and most definitely, our physical health.

    two days after I received the diagnosis of ST IV met BC, I was contacted by a woman from our cancer center practice. she id’d herself as a patient financial advocate in their billing office. her job is to find resources that can help patients tap into for every sort of cost that exists. AND she does all the leg work, writing letters, filling out forms, then sending them for patients to sign, return to her with no cost what so ever, not even having to pay the postage. on my first visit to my oncologist, she had come from her office across the street, to meet us personally, and to present us with a folder of all the resources that might apply to us. she was informed previously by my oncologist of the treatment plan and was well informed as to the costs involved. she explained how medicare and our secondary insurance would work. now that both hugh and I were cancer patients, she wanted us to be fully aware of her availability and willingness to meet with her any time. both hugh I were naïve, thinking we had such good insurance coverage, but as treatment began for me, and hugh would soon undergo another stem cell transplant, the numbers began to be overwhelming – moving to nearly one million dollars. I have since learned that nearly all major cancer centers have these wonderful persons on their staff. but the most distressing issue is that not everyone has a person who is pro-active, and makes such immediate contact to explain their roles.

    sadly, this means that patients going through the worst time in their lives must be savvy enough to seek out the patient financial advocate themselves. does it ever occur to them this might be the case? I highly doubt it. how would one know unless the PFA contacted them?

    from our experience and all of the dreadful ones I’ve learned of, I feel compelled to mention, to urge anyone who is a new cancer patient, to ask if the cancer center of their choice has such a person on their staff, to make contact with them as soon as possible, and consider them part of their care team. our advocate took special classes to get her certification to be a patient financial advocate. but many may not be certified, so it’s important to ask about that. people I know right now, dealing with a ST IV illness at another cancer center had no contact, and in fact, the advocate conducts all her work with just talking on the phone piece-meal, putting my friend on hold, and providing very little support and effort to render advice or aide. she does not do any of the leg work, simply puts it off on the patient and family. the horrific burden of dealing with a complex illness for both patient and caregiver, or worse, for people like you and I who are alone is not acceptable. my friend is gathering up all the sheaves of bills and statements, and making an appointment to have a face to face meeting to get things sorted out. she just started a new job, her husband is gravely ill, and now they have to work backwards from diagnosis through treatment thus far – and she is angry, exhausted, and holds no faith in the PFA having the expertise, nor desire to render guidance. and I am so angry on my friend’s behalf – because if the PFA is certified, she has not done her job, and has so far, gotten away with it.

    I think you did a wonderful job providing the links to the list of resources. I would offer an additional suggestion: all PFA’s are busy and carry a very heavy caseload. I advised my friend to make a succinct outline of her husband’s illness, the treatment he has received, as well as treatment that is planned, , along with the most current insurance info (which has changed with her new employment status), along with their pertinent personal finances preferably in writing (last taxes filed, etc) to jump start the process, in the hopes that the PFA will feel less burdened, and can quickly produce some results. whether we like it or not, this is just another example of the new world of for-profit medicine, and we must be prepared to partner-up with not only our physicians but with ancillary personnel in order to assure ourselves of remaining solvent if at all possible.

    much love and light, to you, dear jan,

    Karen xoxo

  • http://janhasak.com jhasak

    What a thoughtful reply, Karen. I urge all patients in our circumstances to do as you recommend: seek out that PFA after gathering critical documents. It’s a shame we have to do so much of our own legwork, but we are compelled to forge ahead to avoid potential financial disaster. Thank you so very much for enlightening me and my readers to the PFA resource. XOX

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