What is the cost of cancer?
We are likely to agree that such a deep probing question is exquisitely difficult to answer; the murkiness of the water increases as we move from tangible to intangible costs.
A link to the CNNMoney report on physicians (not the least of whom are oncologists) struggling to make ends meet in their practices was featured in my January 6 edition of Cancer in the News. We are, and perhaps uncomfortably so, aware of the difficulties of the current system in place, and the equitable financing of cancer care is a prevailing thought on our minds. The dense fog of billing issues and how much (or how little) will be reimbursed seems nearly insurmountable to us at times as providers.
But what about the patient’s perspective?
An increasing amount of attention is being channeled to this vital area, and the accounts from patients are distressing. For example, the following patient statements were reported in the research by Zafar et al (Abstract; Virtual Meeting):
“I have had to go without groceries in the house just to get my medicine.”
“I became homeless and our entire family has had to live with a friend several times.”
And in the Winter 2011 issue of CURE, the impact of financial toxicity is explored through the eyes of several patients, one of whom stated, “I called my oncologist and said, ‘OK, shall I pay for this pill or shall I eat?’”
I suspect there are many more such stories out there and fear more to come.
Who truly anticipates that the loss of health may be linked to loss of any financial stability one has worked to establish over the course of time? Many of us are looking at absorbing more of the cost of our health insurance in some fashion; cost sharing is on the rise in the heart of the economic down turn.
Ramsey et al (Abstract; Virtual Meeting) presented their work on cancer diagnosis as a risk factor for personal bankruptcy at the 2011 ASCO Annual Meeting. A number of notable findings were reported, including that the highest risk of bankruptcy occurred in patients with cancers of the lung and thyroid followed by those with leukemia or lymphoma. Furthermore, bankruptcy rates approximately quadrupled at 5 years from diagnosis in these patient groups.
The work by Zafar et al (Abstract; Virtual Meeting) on the impact of out-of-pocket expenses on cancer care was also presented at the 2011 ASCO Annual Meeting. Although 99% of the patients in their study were insured, the mean out-of-pocket expenses incurred by patients was $712 a month. Such expenses were a catastrophic burden for 11% of the patients in their study, and for 69%, these out-of-pocket expenses were either a moderate or significant burden.
Ways in which patients in this study coped with the costs of their cancer care included foregoing recommended tests or procedures, increasing the time interval between (or skipping altogether) clinic or chemo appointments, not filling prescriptions, taking less than the prescribed amount of medication, and taking medications prescribed for another person. The lifestyle changes the patients made in this study included using a portion of or all of their savings to pay for their care, selling their possessions or property, and spending less on basics like food and clothing.
There are many difficult discussions in medicine; we can add discussions of affordability of care options to this list.
I am thankful that ASCO underscores the importance of this terribly significant issue for patients by making information available on managing the cost of cancer care on the www.cancer.net web site. Financial discussions are difficult and even seemingly taboo, and the resources here provide a framework in which these discussions can be held.
Incomplete treatment of disease or financial ruin are not the endpoints that we or our patients envision.
I encourage us all to overcome the stigma of discussions of affordability of care. In the words of Dr. Lichter, “Bringing that information in as part of the discussion is as important as the physical or emotional side-effects.”
As always, I welcome your comments.
We are likely to agree that such a deep probing question is exquisitely difficult to answer; the murkiness of the water increases as we move from tangible to intangible costs.
A link to the CNNMoney report on physicians (not the least of whom are oncologists) struggling to make ends meet in their practices was featured in my January 6 edition of Cancer in the News. We are, and perhaps uncomfortably so, aware of the difficulties of the current system in place, and the equitable financing of cancer care is a prevailing thought on our minds. The dense fog of billing issues and how much (or how little) will be reimbursed seems nearly insurmountable to us at times as providers.
But what about the patient’s perspective?
An increasing amount of attention is being channeled to this vital area, and the accounts from patients are distressing. For example, the following patient statements were reported in the research by Zafar et al (Abstract; Virtual Meeting):
“I have had to go without groceries in the house just to get my medicine.”
“I became homeless and our entire family has had to live with a friend several times.”
And in the Winter 2011 issue of CURE, the impact of financial toxicity is explored through the eyes of several patients, one of whom stated, “I called my oncologist and said, ‘OK, shall I pay for this pill or shall I eat?’”
I suspect there are many more such stories out there and fear more to come.
Who truly anticipates that the loss of health may be linked to loss of any financial stability one has worked to establish over the course of time? Many of us are looking at absorbing more of the cost of our health insurance in some fashion; cost sharing is on the rise in the heart of the economic down turn.
Ramsey et al (Abstract; Virtual Meeting) presented their work on cancer diagnosis as a risk factor for personal bankruptcy at the 2011 ASCO Annual Meeting. A number of notable findings were reported, including that the highest risk of bankruptcy occurred in patients with cancers of the lung and thyroid followed by those with leukemia or lymphoma. Furthermore, bankruptcy rates approximately quadrupled at 5 years from diagnosis in these patient groups.
The work by Zafar et al (Abstract; Virtual Meeting) on the impact of out-of-pocket expenses on cancer care was also presented at the 2011 ASCO Annual Meeting. Although 99% of the patients in their study were insured, the mean out-of-pocket expenses incurred by patients was $712 a month. Such expenses were a catastrophic burden for 11% of the patients in their study, and for 69%, these out-of-pocket expenses were either a moderate or significant burden.
Ways in which patients in this study coped with the costs of their cancer care included foregoing recommended tests or procedures, increasing the time interval between (or skipping altogether) clinic or chemo appointments, not filling prescriptions, taking less than the prescribed amount of medication, and taking medications prescribed for another person. The lifestyle changes the patients made in this study included using a portion of or all of their savings to pay for their care, selling their possessions or property, and spending less on basics like food and clothing.
There are many difficult discussions in medicine; we can add discussions of affordability of care options to this list.
I am thankful that ASCO underscores the importance of this terribly significant issue for patients by making information available on managing the cost of cancer care on the www.cancer.net web site. Financial discussions are difficult and even seemingly taboo, and the resources here provide a framework in which these discussions can be held.
Incomplete treatment of disease or financial ruin are not the endpoints that we or our patients envision.
I encourage us all to overcome the stigma of discussions of affordability of care. In the words of Dr. Lichter, “Bringing that information in as part of the discussion is as important as the physical or emotional side-effects.”
As always, I welcome your comments.
Disclaimer:
The ideas and opinions expressed on the ASCO Connection Blogs do not necessarily reflect those of ASCO. None of the information posted on ASCOconnection.org is intended as medical, legal, or business advice, or advice about reimbursement for health care services. The mention of any product, service, company, therapy or physician practice on ASCOconnection.org does not constitute an endorsement of any kind by ASCO. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of the material contained in, posted on, or linked to this site, or any errors or omissions.
Comments
Michael A. Thompson, FASCO, MD, PhD
Jan, 17 2012 10:44 AM
Heather -
Great comments.
I think that over time costs will continue to shift to patients.
It would be interesting to see these cost analysis evaluated over time and in relation to various local, regional, or national policies.
Heather Marie Hylton, PA-C
Jan, 18 2012 10:59 PM
I completely agree--I think this trend of shifting more costs to patients is very likely to continue. As we are seeing this transition occurring actively, I anticipate it will have a "snowball" effect, leaving patients with few options.
I also agree that looking at this longitudinally with the variables you mention would be a good direction to take further research.
Thank you for sharing your thoughts!
Lee N. Newcomer, MD
Jan, 19 2012 3:55 PM
There's an underlying issue in the bankruptcy issue for medical care--baby boomers forgot to save. The average amount of money triggering a medical bankruptcy was about $10,000. Approximately one third of baby boomers will retire with no assets.
I'm completely supportive of ASCO's efforts to bring the cost of care into the patient discussion and their efforts to identify ways to reduce that cost. But the most heroic efforts won't overcome the fact that a large portion of our society didn't save for their future.
Heather Marie Hylton, PA-C
Jan, 20 2012 11:01 PM
I think you make some interesting points which highlight the need for further research to identify all of the contributing factors in this dilemma.
Interestingly, Ramsey et al's research showed that younger patients were at higher risk for bankruptcy compared to their older counterparts.
I suspect saving for the future is going to become increasingly difficult given all the current variables at play. I wonder how many people have saved for unexpected healthcare expenses based upon projections made a decade or more ago? I'm not sure how well we could have predicted just how much of our healthcare (and related) expenses would come out of our pockets in the 21st century.
Thank you for sharing your thoughts on this difficult issue!
Gabriella Graham
Jan, 21 2012 10:57 PM
As both a cancer patient, and an advocate for cancer patients throughout the United States and in 48 countries, I can attest to attest to the financial hardship, if not downright devastation, experienced by cancer patients, and all chronically ill patients.
Even if a patient is employed, there are limits to sick leave and disability benefits. If a chronic illness persists, patients are resigned to long term disability benefits, "earning" a fraction of their previous salary, while incurring ever increasing co payments and/or other medical care costs not covered by insurance (if one is fortunate enough to have insurance.)
The difficulty of obtaining health insurance after a patient has been diagnosed, or treated for cancer, is nearly insurmountable.
While a great deal of fund raising efforts are focused on financing research and seeking improved treatments, what good will come from these improvements if patients can't afford them in the first place?
Gabriella Graham
Patient Advocate
PMP Pals' Network
www.pmppals.org
Joseph Kash, MD
Jan, 24 2012 3:52 PM
Look at how the tech industry advances and you get more for cheaper. Every year there is a new iPad and new iPhone that does more for less. Every year televisions get larger screens yet they are lighter and thnner AND cheaper. Look at the software industry where talented programers develop Google and Facebook. It has made it so easy for us to type mistakes in the Google search yet it finds what I am looking for.
But what about the healthcare industry? Less seems to cost more in healthcare. All hinges on FDA and Medicare approval rather than true innovation, efficiency and affordability. Our solution in health care is to have someone regulate the system in order to ensure that everyone has access to everything or something. Would anyone suggest that the tech industry would do better if we got rid of reduncancy and ensured access for all. Why are the EMR systems currently available dinosaurs compared to Google, Microsoft, Apple and facebook? Would even the poor in our country be able to afford flat screen televisions and smartphones if this was a "Medicare/FDA" tech industry?
I don't pretend to know the answer but unfortunatel the solutions proposed by those in power look pretty depressing compared to the excitement that I have about the tech industry.
Heather Marie Hylton, PA-C
Jan, 26 2012 12:14 PM
Dr. Kash, thank you for your reply. I think it is quite interesting to look at the healthcare industry side-by-side with the tech industry. In the broadest sense, I think both industries share common goals of improving access and product quality. The means by which these goals are achieved, however, vary considerably.
Technology is copied, upgraded, and expanded rapidly. A former professor of mine once reminisced about how expensive (and large) the 4-function calculator was when it supplanted the then-current technology, the slide rule. Needless to say, technology has exploded exponentially and it's difficult to imagine what technologies we will have access to in the next 5-10 years considering all the advances in the past 5-10 years. And yes, these new technologies hitting the shelves every day are becoming more and more affordable.
The growth and expansion of healthcare, in contrast, occurs quite differently. Let's take drug development, for example. We understand that drug development is costly, and the cost of currently available drugs also covers the development costs of drugs that did not work out as well. The process is slower than we would like it to be, but there is some regulation here that is reasonable. Ensuring the safety of medications is an extensive process, and I'm not sure just how much shorter it could actually become. With regard to actual product safety testing, I suspect the tech industry's process is much more abbreviated.
I neither will pretend to know the answers but believe that taking a good look at some (and please forgive me here) "common sense" issues would have the potential to make a real difference. In the overall scope of healthcare economics, how can the costs incurred by having a patient stay in the hospital an extra day to receive a drug that in the outpatient setting is not covered or, if covered, is much too costly for the patient be justified? With some close scrutiny and simple changes implemented in this scenario, improvements in both patient satisfaction and cost containment could be readily achieved.
There must be some sort of technology that could help us figure this out....
Heather Marie Hylton, PA-C
Jan, 26 2012 12:59 PM
Ms. Graham, thank you for sharing your thoughts and experience. Your advocacy work with the PMP Pals' Network is certainly appreciated, and I wish you all the best as you continue in this important and valued work and in your own personal journey with cancer.
I completely agree that even with long-term disability benefits, it's incredibly difficult for many to make ends meet as just a fraction of one's previous salary is provided through this entity.
One interesting finding in the work by Zafar et al was that 27% of patients coped with out-of-pocket expenses by either working more hours themselves or having a family member work more hours. So many patients are just not in that kind of situation. Many undergoing active treatment are unable to work at all due to profound fatigue and other critical symptoms or perhaps they work in a setting that places them at increased risk for catastrophic infections, for example. And family members working more? Family members are often the primary support network for our patients and have family and home responsibilities in addition to their caregiving and work responsibilities. It is difficult to imagine them being able to do any more than what they already are doing.
I agree we are rapidly approaching a crossroad: How can our patients benefit from advances in cancer care if such advances are not affordable?
Zafar et al posed the question as to whether out-of-pocket expenses should be included in the healthcare reform discussion. I would argue yes. I strongly believe it is only through examining the problem in its entirety will we be able to produce appropriate solutions that will help our patients have access to the best cancer care.
Ben C. Creelan, MD, MS
Jan, 27 2012 10:31 PM
I agree that the cost of new drugs is becoming an increasingly important concern.
Duplication is one issue that is occasionally cited in developmental therapeutics meetings. This may contribute to excessive spending in finding effective therapies. For example, cooperative group trials occasionally overlap with trials at other centers. This concern is not confined to academics. For instance, there are 1186 interventional trials of mTOR inhibitors currently registered, often for similiar disease types and indications. Suboptimal communication and coordination exists between pharmaceutical drug discovery branches.
The current approval system may encourage an expensive 'slot machine' approach which is not optimally informed by science. I think that more careful planning and coordination, and a higher bar for drug approval, may help curtail spending on less effective therapies.
Deborah Weaver
Jan, 28 2012 5:05 PM
One economic fall-out of cancer that is not mentioned in tihs article is chronic unemployment following cancer. In March, I will be a four-year cancer survivor. I am not a doctor or a scientist so I do not have statistics to back up this statement. However, I do have anecdotal evidence from both my own life and the lives of women I have met on the Komen message boards.
Six months to the day piror to my diagnosis, my divorce had been finalized. I was making a low six-figure income and had managed, despite the increase expenses of making mortgage payments - now higher due to refinancing in the divorce - to save a little over $5,000. Not a great deal of money, but pretty good in only six months.
It took eight months and every penny of my savings to fight cancer and survive. Unfortunately, I had not recovered from the ordeal enough to return to work at the end of my FMLA and was terminated. Because I had been at the company for less than six months, my long-term disability benefits were terminated after six months because I had been on an anti-depressant prior to the cancer and therefore, the chronic stress disorder, depression, and cognitive side-effects that I was struggling with were determined to be "pre-existing."
More than three years after completing treatment, I live with and often depend on my mother who is 80. (I am 58.) I struggle to piece together part-time work that will cover my living expenses, including the high cost of ongoing medical care, especially prescription costs for the side effects of treatment, including ongoing psycotherapy to deal with a chronic stress disorder (identical in every way to PTSD but without a quaifying cause). I also have other chronic health problems that had been manageable prior to cancer, but were aggravated by the chemotherapy.
At age 58, after three years of un- and underemployment, I am willing to do anything that I am physically capabe of doing. I am disqualified for some jobs because I cannot be bonded due to the bankruptcy I went through one year after completing treatment. I am considered over-quaified for the vast majority of jobs because of my advanced degrees and prior experience (SVP of a credit union) and I am not considered for other jobs because I have not worked in those fields for more than two years. (And let's not forget I was released to return to work at the nadir of the economic crisis).
Surviving cancer leads to a cascading series of financial, personal, and physical consequences that lead survivors to sometimes question whether it would have been better to succomb to the disease. Even those of us, like me, who have a robust skill set for overcoming difficult circumstances, find it hard to be optimistic in the face of reality. (By the way, I was just cut back from 16 to 4 hours per week at the community college where I teach.)