Another heartbreaking failure of the ACA is told by Paul from Vermont. He relates the story of his wife’s death—another victim of the insurance system we call health care:
On Jan. 23, 2014, my wife Jeanette died of cancer. She was first diagnosed with thyroid cancer back in 2008. We were fortunate to have comprehensive health insurance at the time, and Jeanette responded well to treatment. Her cancer went into remission, and everything was great.
Then 15 months ago, Jeanette came down with a chronic cough. She went to the doctor and was told that she may have allergies. Looking for a second opinion, she went back to the oncologist who had treated her thyroid cancer and got X-rayed and tested. The news was terrible: Jeanette had advanced Stage 4 cancer that had spread to almost all of her internal organs.
We battled with our insurance company, Blue Cross Blue Shield, to get the chemotherapy pills Jeanette needed. They denied payment for the pills five times, saying that they needed to find the cheapest vendor. Finally, on the day Jeanette died, the pills arrived. They were tossed onto our deck and left sitting in 20-below-zero temperatures.
Losing my wife of 34 years is one of the most painful things I’ve ever experienced, but it was made much worse by the battles Jeanette and I had over insurance and by the lingering questions over whether Jeanette might have survived or lived more comfortably if she’d gotten the right test and treatments. After Jeanette died, I asked her doctor why they’d done no testing during her remission to detect any growth of cancer beyond her thyroid. I was informed that testing was “cost prohibitive” and may not provide conclusive results.
Paul’s and Susan’s stories are but two of literally thousands in which people die because our market-based system denies access to needed health care. And the worst part of these stories is that they were enrolled in insurance but could not get needed health care. Our lives depend on the ability to access a nonexistent health care system.
Far worse are the stories from those who cannot afford insurance premiums at all. There is a particularly large group of the poorest persons who find themselves in this situation. Perhaps in passing the ACA, the government envisioned those persons being covered by Medicaid, a federally funded state program. States, however, are left independent to accept or deny Medicaid funding based on their own formulae. Many states have not expanded their Medicaid eligibility. People caught in that gap are those who are the poorest. They are not eligible for federal subsidies because they are too poor, and it was assumed they would be getting Medicaid. These people without insurance number at least 4.8 million adults who have no access to health care. Premiums of $240 per month with additional out-of-pocket costs of more than $6,000 per year are common. Inability to pay these amounts systemically vitiates the right to health. Imposition of premiums, deductibles, and co-pays is also discriminatory. Some people are asked to pay more than others simply because they are sick. Fees actually inhibit the responsible use of health care by putting up barriers to access care. Right to health denied.
Cost is not the only way in which our system renders the right to health null and void. Health access is also tied to employers’ control of employees’ health care under the ACA. Employees remain in jobs where they are underpaid or suffer abusive working conditions so that they can retain health insurance; insurance that may or may not get them health care, but which is better than nothing.
Additionally, those employees get health care only to the extent that their needs agree with their employers’ definition of health care. This is nowhere more evident than in the recent Supreme Court case Burwell v. Hobby Lobby, 573 U.S. ___ (2014), which allows employers to refuse employees’ coverage for reproductive health if inconsistent with the employer’s religious beliefs on reproductive rights. Clearly, a human right cannot be conditioned upon the religious beliefs of another person. To allow the exercise of one human right—in this case the company/owner’s religious beliefs—to deprive another’s human right—in this case the employee’s reproductive health care—completely defeats the crucial principles of interdependence and universality. Because our “system” is based on insurance rather than health, our Supreme Court was able to successfully void the right to health in its Burwell decision.
Despite the ACA and the Burwell decision, our right to health does exist. We must not be confused between health insurance and health care. Equating the two may be rooted in American exceptionalism; our country has long deluded us into believing insurance, not health, is our right. Our government perpetuates this myth by measuring the success of health care reform by counting how many people are insured.
Any system that promotes only insurance cannot possibly meet human rights standards. For example, there can be no universal access if we have only insurance. We do not need access to the insurance office, but rather to the medical office. There can be no equity in a system that by its very nature profits on human suffering and denial of a fundamental right. After all, insurance companies only make money if they do not pay claims. In short, as long as we view health insurance and health care as synonymous, we will never be able to claim our human right to health. The worst part of this “non-health system” is that our lives depend on the ability to access health care, not health insurance. A system that allows large corporations to profit from deprivation of this right is not a health care system.
We must name and claim our right to health. Only then can we tip the balance of power to demand our government institute a true and universal health care system. In a country with some of the best medical research, technology, and practitioners, people should not have to die for lack of health care. The real confusion lies in the treatment of health as a commodity. Health insurance is no more health care than fire insurance prevents fires in our homes. It is a financial arrangement that has nothing to do with the actual physical or mental health of our nation. Worse yet, it makes our right to health care contingent upon our financial abilities. Human rights are not commodities. The transition from a right to a commodity lies at the heart of a system that perverts a right into an opportunity for corporate profit at the expense of those who suffer the most. Health insurance companies make money by denying claims for care while still collecting premiums. That’s their business model. They lose money every time we actually use our insurance policy to get care. They have shareholders who expect to see big profits. To preserve those profits, insurance is available for those who can afford it, vitiating the actual right to health.
The real meaning of this right to health care requires that all of us, acting together as a community and society, take responsibility to ensure that each person can exercise this right. As individuals, we have a responsibility to contribute to making health care available to each of us. We have a right to the actual health care envisioned by FDR, Martin Luther King Jr., and the United Nations. We recall that Health and Human Services Secretary Kathleen Sibelius (speech on Martin Luther King Jr. Day 2013) assured us: “We at the Department of Health and Human Services honor Martin Luther King Jr.’s call for justice, and recall how 47 years ago he framed health care as a basic human right. We are committed to reducing health disparities, and that means making sure all Americans have access to affordable, quality health care. There is nothing more fundamental to pursuing the American dream than good health.”
All of this history has nothing to do with insurance, but only with a basic human right to health care. We know that an insurance system will not work. We must stop confusing insurance and health care and demand universal health care. If we can actually name that right to health, perhaps we can also claim that right to health. We must bring our government’s robust defense of human rights home to protect and serve the people it represents. Band-aids won’t fix this mess, but a true health care system can and will. As humans, we must name and claim this right for ourselves and our future generations.