I merrily wait in line at Starbucks for my iced cappuccino with soy milk, pay $5+ for $0.25 worth of goods poured into my $14.00 souvenir mug, and walk out the door with my head held high, joyous with the privileges of conspicuous consumption. My server was super-cheery and the brief exchange we had was so pleasant—they really love me! I need that high because I am off to the Department of Motor Vehicles (DMV) for a driving-related task and know–just know–that there will be an incredibly long line at the end of which sits a disgruntled government employee who doesn’t care if I show up or not. Their motivation to help us is non-existent. “Why would anyone ever work here?” I ask, sipping my delicious beverage.
Today, a doctor called someone in the United States (US) and told them the biopsy taken from their leg earlier this week has come back as invasive cancer. A bit distraught and nervous, the patient called up a nationally recognized cancer center, from which they only live a few miles, and on the end of the line is a caring, pleasant voice who informs them they can be seen today! The valet parking is gorgeous, the building is gleaming with glass and steel, and every face they see as they journey from check-in to clinic is smiling, compassionate, and sincere. Their nurse and then doctor are both genuine people with their patient’s best interest in mind, and they carefully and completely explain what has been found, what needs to be done, and how they are going to get through all of this together. As they depart, the receptionist grabs them for a brief moment to return their private insurance card and waves at them as they depart, adding, “We will see you soon!”
Today, someone in Africa went back to the hospital—an 8-hour journey from their home—where their biopsy was performed a month ago, hoping to get the result. After several people searched multiple offices and inquired with several people, the result is found and brought to them, a single piece of paper. Payment is required before they can receive the biopsy results. They have brought money with them, which they gathered from three neighbors, their brother, and by selling some chickens, and pays for the report. They read the report and, at the bottom, notices that it says additional testing is needed. Confused, they ask for help and a pathologist comes to find them. Respectfully, the pathologist explains that additional testing is needed, which is not available in the hospital despite the pathologist’s strong desire to have it, but they can send the biopsy to a lab elsewhere to do the testing which will cost about 3 times what they just paid for the primary report. They happen to have enough and pay the amount requested. The report will be back in about a month. Two months later, they have returned to the hospital for the 4th time and the report is now available. The testing that was done simply confirms that the primary diagnosis is accurate. They go to the oncology clinic on the same campus and sit in the waiting area with 3 dozen other people. They sleep at the clinic overnight outside with about a dozen people. The following afternoon, they are finally seen and the oncologist reviews the report. He notes that if the patient had come to the clinic as soon as they had the biopsy result three months ago, a simple surgery would have cured them of this lesion. But now, because they waited so long, there is only chemotherapy available which is expensive and, the oncologist reports, doesn’t actually work very well for this tumor.
Before you shed a tear for this terrible situation (while I sip my cappuccino and a nurse begins someone’s chemotherapy in a shiny, brightly lit, and expansively windowed infusion unit not far away), we have to ask ourselves what is really going on? First and foremost, this is an allegory to make a few points but the situation is repeated over and over again every day in the US and Africa. However, as a simple, superficial explanation, the person with cancer in the US is receiving their cancer therapy from Starbucks and the person in Africa had to go to the DMV.
Cancer care in the United States is almost entirely in the private sector, dispersed among the 1500 cancer treatment facilities, of which 70 are comprehensive cancer centers.[i] Based on the US population, the expected cancer rate, 100% detection, and 240 working days for a given cancer center, there are on average only 5 new patients per day per cancer center. Is that why one can often get that appointment right away in a major cancer center or is it really a concierge customer service effort? A standard private insurance plan for which I pay, for example, $250 per month and my employer pays $1300 per month is accepted by cancer centers and results in small co-pays for multiple appointments, which can be covered with a Flexible Spending Account (FSA) or Health Savings Account (HSA). On insurance statements after appointments, some of the services received cost thousands of dollars but the patient portion was only, say, a hundred dollars, again, which may be paid with FSA/HSA. It’s so great that we have insurance because the insurance company is bearing the brunt of costs. But are they?
In the United States, 79% of facilities providing health care are private, a mix of non-profit and for-profit.[ii] But 64% of all healthcare in the United States is paid for by the US government through Medicare, Medicaid, the Veterans Administration (VA) system, and Children’s Health Insurance Program (CHIP).[iii],[iv] Since almost every cancer care facility is private (or, stated another way, “not free”), that means that for every one of us at the cancer center getting treatment, for which we and our employer are paying through insurance, there are two people getting the same treatment at the same high-level quality of care for which the government is paying. Those other deductions from our paychecks for Medicare and Medicaid (which everyone pays, regardless of how old, as long as they are employed and regardless of their own health insurance plan) are going towards the 64% coverage. The point is not that the US healthcare system is expensive. The point is that there is a lot of revenue and resource being put into the healthcare system and, thus, there is a high-quality product or experience that is available.
If we look at any low GINI index country and compare their GDP with the US GPD and compare their spending on healthcare as a % of GDP, we don’t even need to do the math to see that there is very little money per person available in the system for any type of healthcare. The challenge in low-resourced settings (by which it is meant low-resourced patients in low-resources locations) is both a lack of funding available to provide healthcare services along with a lack of “stuff” to provide those services. We can invoke the law of supply and demand to try and argue that the people can rise up and demand more healthcare facilities and “someone” will meet that supply. In the US, this results in the Starbucks model. In a low-resourced setting who has the incentive to meet that supply? Where does the government get the money from to create such a system? What private corporation is going to start a healthcare program that provides universal coverage regardless of what you can pay?
The answer is really quite simple. This model of healthcare is insufficient for cancer and isn’t going to work for all patients. Moreover, the Starbucks model is not really applicable, sustainable, nor equitable. When we go to Starbucks for their coffee, to some degree, our choice of Starbucks is because of the a) flavor of the coffee, b) cost of the coffee, c) perception of the coffee, and/or d) convenience of the coffee. We could always choose Dunkin’, Peet’s, Tim Horton’s (maybe let’s not go there for this analogy), or Green Mountain coffee at a different location. There is variation in pricing and convenience. There is variation in the condiments we can use to doctor our coffee. An economy and series of markets exist which allow Starbucks to gather resources from dozens of other companies to provide your coffee. But, ultimately, we are all buying coffee which has caffeine which has a desired effect. We can go to a free AA meeting or to a soup kitchen and get some pretty basic coffee if we don’t have the money to pay. The point is we have choices and we can pay a high price, a low price, or no price and we get coffee.
The Starbucks model does work for a certain sector of the population but not everyone. Since vast majority of cancer care in the US is private, the Starbucks model falls down because we don’t actually have any free options as a society and “low-cost healthcare” is not typically appealing to most Americans with cancer because they have their mortality at stake (no one wants cancer nor does anyone want to die from cancer). In fact, desperation in the face of cancer is what makes the US one of the only places in the developed world where people go bankrupt trying to be treated for cancer. The ultimate inequity is that cancer care is “pay to play” in the US and there essentially aren’t safety nets for any populations that can’t pay (homeless) or are living below a certain income threshold (i.e., the ~10% of Americans without healthcare plus a large percentage with insufficient insurance).[v]
Please remember, these are human beings and they didn’t choose to get cancer (there is no demand for cancer… there is only demand for cancer care!). Since they didn’t have a choice in the disease they have to be burdened with, why is there an expectation that they should pay for the treatment? Moreover, if a patient has a stage I cancer, easily surgically removed and cured vs. a Stage III cancer requiring months of various therapies at a very high cost, how do we ethically explain an increased cost for a worst state of disease? It’s really an inverse quality spectrum and we make patients pay more for getting a lot less. We pay for insurance in case we ever do get cancer (or other major disease). It’s a risk reduction or risk aversion pre-payment. Like we do with our car or our house or our boat. Those last three things we choose to have (and are luxuries). We don’t get to choose to have health. It’s just an inherent part of being human so holding someone accountable for it because they didn’t have the resources to “prepare for the worst” is really the wrong attitude. Our healthcare system isn’t perfect but there are gaps that could be easily filled if resources are allocated efficiently to meet the whole populations needs—that’s the benefit of having a large resource supply into the system. We just have to find the operational efficiency to make the costs work.
However, when we remove the luxuries of insurance, Medicare, and Medicaid and other payments systems from the health sector or, worse, simply assume the government’s role is to provide healthcare 100% free to all citizens in a resource-limited or resource-constrained setting, we suddenly have an untenable situation. The economy and tax-base are not there to create the resources. We find overworked, underpaid, and undersupplied medical staff working in crowded conditions. For single entity care (e.g., HIV, tuberculosis, malaria), vertical programs have made great strides in combatting these diseases even in some of the poorest countries in the world. But cancer is anything but simple with the complexity of cross-discipline collaboration, spectrum of disease, range of treatments, and inherent costs creating huge gaps in the delivery of cancer care. Economic and physical infrastructure for the provision of care is what is needed to meet this challenge. Our current Starbucks model in the US would be extremely difficult to replicate in a low-resourced setting due to the lack of infrastructure. However, when this infrastructure is assessed, planned for, and implemented, cancer care can be delivered in these settings at a significantly lower cost per patient. Adding infrastructure implementation high-quality private facilities and public-private partnerships creates a way forward to pump resources into the system and insure that no patient is left behind. To round out this allegory, AAA locations (a commercial car-servicing company) in various parts of the US allow one to renew your driver’s license with them, rather than the DMV. I did this once, it was VERY fast, friendly, and efficient. This type of public-private partnership worked for me and I believe it will work for cancer if we are willing to try.
[i] NCI-designated Cancer Center. https://en.wikipedia.org/wiki/NCI-designated_Cancer_Center Retrieved May 21, 2019.
[ii] “Fast Facts on US Hospitals”. Aha.org. Retrieved December 1, 2016.
[iii] Himmelstein DU, Woolhandler S (March 2016). “The Current and Projected Taxpayer Shares of US Health Costs”. American Journal of Public Health. 106 (3): 449–52. doi:10.2105/AJPH.2015.302997. PMC 4880216. PMID 26794173. Government’s share of overall health spending was 64% of national health expenditures in 2013
[iv] ^ Leonard K (January 22, 2016). “Could Universal Health Care Save U.S. Taxpayers Money?”. U.S. News & World Report. Retrieved July 12, 2016.
-Dan Milner, MD, MSc, spent 10 years at Harvard where he taught pathology, microbiology, and infectious disease. He began working in Africa in 1997 as a medical student and has built an international reputation as an expert in cerebral malaria. In his current role as Chief Medical officer of ASCP, he leads all PEPFAR activities as well as the Partners for Cancer Diagnosis and Treatment in Africa Initiative.