Keywords: Participatory medicine, aplastic anemia, autoimmune disease, health care reform, patient-centered care.
Citation: Friedman KM. Health care: a human rights and economic justice issue. J Participat Med. 2011 Mar 7; 3:e12.
Published: March 7, 2011.
Competing Interests: The author has declared that no competing interests exist.

With respect to health care and medicine, a destructive behavior pattern that is typical of autoimmune disease has emerged in certain circles of our body politic and the financial interests undergirding them. These forces have miscalculated, misfired, and now threaten to undermine a basic human right and a pillar of the common good. Imagine the outrage in the general population if travel routinely resulted in roads that were impassable, if bridges were interrupted midway, leaving the traveler staring into the abyss; if FEMA were so weakened as to fail to rescue an American city besieged by hurricane; if key sectors of national security were privatized and increasingly unregulated, and as a result we failed at a crucial moment to defend ourselves from attack.

Four years ago, I was given a diagnosis of aplastic anemia. In the early days of my diagnosis I could not avoid the feeling of having been betrayed by my own body. Plunged into the world of participatory medicine, I undertook research with every tool at my disposal, sought advice from specialists, and obtained second and third opinions. My doctors encouraged me to be an active, informed patient, and communication about my treatment flowed in two directions.

During the early, difficult days of my illness, I encountered what could become my greatest obstacle to survival. My insurer, a private carrier, would not provide clear answers about my coverage, which gave me enormous stress and anxiety. My role as a participatory patient became, by necessity, one that included interaction with insurance representatives, and it increasingly centered on the fear of crushing debt and unaffordable treatment. The dispute was eventually resolved by the Healthcare Advocate, an office within the state government of Connecticut. Fortunately, in this case, a government agency served as a proponent of decency, fairness, and the common good. It helped clear away the greed and inefficiency of a for-profit company that stood between my doctors and me. Some months later, I was able to enter a large-pool plan where coverage for treatment was reasonably equitable, and breathed a sigh of relief.

My experiences led me to considerable reflection on the state of the health insurance market. In 1963, Kenneth Arrow, a Stanford University economist, later a Nobel laureate, demonstrated in a groundbreaking paper that the usual rules of the market can never govern medical care.[1] He argued that doctors and patients interact as highly atypical buyers and sellers; thus the price and extent of care provided to the sick should be determined according to standards intrinsic to medicine and not those of business. Since an individual’s health is so variable and largely unpredictable, it should follow that attempting to value and insure it as a commodity, like a car or a house, is antithetical to the practice of medical care and, therefore, is not an appropriate model. The system clearly needed reform.

Health care reform moved to center stage during the last presidential campaign under the influence of the late Senator Edward Kennedy, a decades-long champion of reform and of medical research. On May 8, 2008, just days before the Senator was diagnosed with a malignant glioma, he convened a hearing as chairman of the Senate’s Health, Education, Labor and Pensions Committee, where an impressive lineup of cancer experts, including Edward Benz, MD, President of Dana-Farber/Harvard Cancer Center, Lance Armstrong, Elizabeth Edwards, Hala Moddelmog of the Susan G. Komen Breast Cancer Foundation, and others described new findings in the genetics of cancer, namely its “molecular signature,” which signaled potential new breakthrough therapies. But they warned that potential scientific discoveries far exceeded current support for research and clinical application.[2] Time was slipping away. The experts’ testimonies suggested that the country had both a human and an economic rights crisis in medical research, basic access to health care, and the ability to transfer clinical research to patient care. Considering the economic potential of investment in medical research, it was also clear that these rights were integral to our success in a rapidly changing and competitive global economy. So why would we sabotage these sectors?

Throughout the continuing health care debate, experts have repeatedly demonstrated that health care coverage that rewards smart, targeted, integrated treatment is not only less costly than the traditional fee-for-service model but produces much better outcomes for patients, who become active partners with their medical team. Take, for example, the Alternative Quality Contract (AQC) of Blue Cross/Blue Shield of Massachusetts, an experiment that has just completed its first year. This contract uses a “global payment model” based on patient-centered care, where physicians and hospitals are reimbursed for the quality, not the quantity, of the care they provide. Described as “one of the largest private payment reform initiatives in the country,” the AQC matches a per-patient budget with nationally approved quality markers such as measurable outcomes and patient experience. This approach fosters increased quality time between doctor and patient, and assists patients in successfully managing chronic conditions. “First-year results show the AQC is on track to achieve its original goal of reducing annual health care cost trends by one-half over the five years of the AQC contracts ….”; and “On clinical outcome measures, many AQC groups’ performance measures are approaching or have reached the highest levels of quality believed to be attainable for a patient population.[3]”

Elsewhere, expert Atul Gawande, MD described various efforts across the country to lower expenditures and deliver more effective care. He noted that the sickest patients’ medical data revealed uncoordinated care that resulted in high expense and worsening health. Gawande highlighted the work of Jeffrey Brenner, MD, a primary care practitioner in poverty-stricken Camden, New Jersey, who saw a striking relationship between high medical costs and a chronic, poorly managed patient cohort, ie those who were “cycling in and out of the hospital … receiving the worst care.” Compiling a database and a “super-utilizer” map, Brenner assembled a team dedicated to “building relationships with people who are in crisis,” including patients with chronic conditions such as diabetes, congestive heart failure, or asthma. Measuring results with its first 36 high utilizers, Brenner’s Camden Coalition of Health care Providers recorded a 40% reduction in hospital and emergency room visits per month and a 56% reduction in monthly hospital bills.[4]

These are but two of many innovative models, already showing success, of patient-centric care that was encouraged by the passage of the Patient Protection and Affordable Care Act (PPACA) in March, 2010. Nonetheless, certain legislators and media commentators have mobilized to try and protect corporate interests, describing PPACA as a threat to our way of life, even to our freedom. For those who have been threatened by insurances abuses, this refrain in defense of a status-quo business model is a rhetorical assault on our everyday reality as patients.

Arnold S. Relman, MD, Professor of Medicine, Emeritus, at Harvard Medical School and former editor of The New England Journal of Medicine, has explained how and why our health care system became based on a profit-driven corporate paradigm, in which great sections are owned by private investors whose focus is to achieve maximum returns.”[In] no other country,” he wrote, “is medical care marketed and advertised so aggressively, as if it were just another commodity in trade. [5]” According to this scenario, medical services must remain profitable, even if ineffective, while costs skyrocket and many are priced out of the system. This is medical care not as a right but as a privilege for the increasing few.

Participatory medicine and patient-centered care have a cause and effect relationship. Both result in cost control and shift us toward integration across all aspects of health care. Participatory medicine may be the most important driving force for new models and experiments in patient-centric practice, cost reform, and medical research–the greatest hope for those of us with bone marrow failure, cancer, and other chronic diseases. This may be our most important task as patients: To help free doctors to treat us and investigators to take breakthrough science into the clinic. (See cancercommons.org, a new effort demonstrating how participatory medicine can drive new models of access.) It ultimately falls to us, the patients, to frame health care as a human right and matter of economic justice, alongside national security, public education, and disaster relief. As technology and web-based interactions accelerate, we must be vigilant to keep the big picture in mind and stand against efforts to beat back progress. We must lead the national discussion about health care and medicine and question the moral authority of a system that fails us. There are cures for this national disorder (and they can be implemented in time to help patients with aplastic anemia and many cancers) if we clarify our values and insist that this basic human right become a priority.


  1. Arrow KJ. Uncertainty and the welfare economics of medical care. The American Economic Review. 1963 Dec; 53:5.
  2. Cancer: challenges and opportunities in the 21st century [C-Span Video Library]. Hearing of the Senate Committee on Health, Education, Labor and Pensions, 110 Cong, 2nd Sess (2008).
  3. BCBS of Massachusetts announces first-year results of Alternative Quality Contract [press release]. Blue Cross Blue Shield of Massachusetts, Inc. Available at: http://www.healthcarefinancenews.com/press-release/bcbs-massachusetts-announces-first-year-results-alternative-quality-contract. Accessed February 20, 2011.
  4. Gawande A. The hot spotters: can we lower medical costs by giving the neediest patients better care? The New Yorker. January 24, 2011.
  5. Relman A. The healthcare reform we need & are not getting. The New York Review of Books. July 2, 2009.

Copyright: © 2011 Kathleen McCaffrey Friedman. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.