Chronic Illness and American Healthcare Policy


As healthcare care costs climbed exponentially in the 1980’s, so did the cost of health insurance plans. As a result, employers began to enroll their employees in managed care plans and many Americans were forced to leave their traditional indemnity plans. With the advent of the health maintenance organization (HMO) there is now a financial incentive to under-utilize medical care (Blumstein, 1996; Davis & Schoen, 1996).

In order to reduce financial risk, health insurance companies have restricted enrollment to individuals in poor health. By covering the minimal standards of care and excluding high risk groups altogether, major insurance companies have made a hefty profit by risking the health of their enrollees in HMOs.

Insurers began to include health survey status questionnaires with applications and some even implemented AIDS and genetic testing in order to identify high- risk individuals. In the late 1980’s, insurance companies began including sexual orientation as a high risk category and refused to write policies for anyone believed to be a homosexual (Stone, 1994). By limiting enrollment to the healthiest members of society, selective enrollment undermines the solidarity principle of health insurance.

By eliminating those who are suspect of using more services than their healthier counterparts, insurance companies are able to offer lower prices to healthier individuals. By excluding preexisting conditions and requiring certain individuals to purchase high-risk policies, the number of uninsured and underinsured Americans continue to grow at an alarming rate.

Unlike most industrialized nations, our country has yet to make a commitment to provide health care for all Americans. Equal opportunity lies at the core of a democratic ; yet, we seem willing to accept enormous discrepancies in the quality of health care given to our citizens based upon their social and financial status.

Healthcare is a natural, human right. Without it, the idea of upward mobility is a moot point. Clearly, good health is a precursor to leading a happy, successful, and productive life. Employers recognize this fact and have provided health insurance to their employees so they will remain productive on the job.

In addition to these changes in the health care system, many chronically ill people have lost their health insurance or their employer has chosen not to provide health care because of the prohibitive cost. This system forces the sickest (and neediest) people into the individual health insurance market, which is by definition a high-risk pool. Only the sickest people with the highest health care costs would choose to pay premiums in excess of $200 per month. This is a calculated risk that is very well understood by the insurance companies and individual health insurance premiums reflect that fact. Health maintenance organizations work-until someone gets sick. It is the young and the healthy that seem to thrive in this newly reformed market. Unfortunately this is not what the majority of Americans need.

Unfortunately, we can’t seem to agree on the role health care should play in our nation’s economy. Americans spend more on health care than any other industrialized nation. Despite the incredible amount of financial resources that are devoted to health care in this country we are among the world’s sickest people. There are some basic ethical questions that must be answered before we can expect reform. We must decide how we feel about health care and recognize that it is fundamentally different from other consumer goods.

“The political controversy over the distribution of health care in the United States is an instructive problem in distributive justice. Good health care is necessary for pursuing most other things in life. Yet equal access to health care would require the government not only to redistribute resources from the rich and healthy to the poor and infirm, but also restrict the freedom of doctors and other health care providers. Such redistributions may be warranted, but to what level, and to what extent?” -Guttman & Thompson

This fact is often neglected in discussions about health care. Health care is often looked upon as any other consumer good that people can chose at the local Wal-mart. As a result, the best health care is something that becomes affordable and available to only the wealthiest individuals. There are currently well over 40 million uninsured people in the United States. Millions more are underinsured. The majority of these people are from working households who simply can not afford health insurance. Recent trends in the insurance market have forced many hospitals into discounted rates for health maintenance organizations (HMOs) and this cost shifting has now caused many hospitals to rethink their policies on providing care to the uninsured. Uninsured people now have few choices about where they receive health care are frequently postpone going to the doctor until they become gravely ill simply because they can not afford to pay the bills for themselves or their families.

In addition, people who are chronically ill do not want to sever their ties with their current physician and therefore opt out of the HMO market (Agency for Health Care Policy and Research, 1996). In response to that fact, insurance companies have made the cost of preferred provider organizations (PPOs) and fee-for service (indemnity) insurance policies prohibitively expensive for employers and enrollees.

Together, these things contribute to the problem of selective enrollment and/or disenrollment in the group insurance market. Most reform efforts have neglected this segment of the population and fail to consider the vast number of underinsured people in this country. In parts of the country where HMOs have saturated the market, this problem is so severe that most hospitals and private physicians will not accept a patient until they have adequately demonstrated their ability to pay.

Traditionally, fee-for-service plans have worked well for people with acute illnesses or injuries. Because there is an incentive to over treat patients in a fee- for-service plan, HMOs have responded by limiting access to expensive and experimental treatments. The methods HMOs use to minimize their financial expenditures are often time consuming and very costly to the patient’s health.

HMOs have set up a gate-keeping system whereby patients must first visit a primary care provider before seeing a specialist. This is very problematic for people with complex or chronic illnesses since these patients need regular, unobstructed access to a knowledgeable physician or specialist. Often times a patient’s assigned PCP is a nurse or a physician who then must receive approval from the managed care company. A major concern for PCPs is that it is often incredibly difficult to speak with a knowledgeable person at the managed care company.

Physicians are frustrated by the time consuming process and the routine denials that are set up as road blocks to minimize care and expenditures. Suddenly physicians have found themselves second-guessed by managed care employees who are not familiar with the patient or the medical procedures being requested.

Rigid pre-certification requirements and nonspecific utilization review procedures place strategic barriers to access medical treatment in HMOs. Pre- certification requirements translate into strategic barriers preventing individuals with chronic illness from receiving the care they need in a timely fashion.

Furthermore, using primary care providers as a mechanism to limit access to specialists has not only complicated administrative processing, but limits an enrolled beneficiaries choice of health care professionals beyond what is available to the general public in that geographic area. Together, these activities institutionalize exclusionary waiting periods and routine denials for necessary medical care.

HIV and AIDS provide an excellent example of the limitations placed on chronically ill patients enrolled in HMOs. Recent advances with AIDS and HIV medications offer a glimmer of hope for infected patients. AIDS is no longer a death sentence and HIV / AIDS is now seen as a chronic illness that can be managed. Unfortunately, managed care companies often deny coverage for the new and advanced treatment for AIDS patients since HMOs consider new treatments experimental.

Theoretically, the patient should benefit from a primary care provider at the core of a coordinated medical team, but this has not proven to be the case. AIDS patients are subject to the same routine delays and authorization problems encountered by individuals coping with chronic illness. For the first time since the onset of the epidemic, AIDS related deaths have started to decline.

In 1996, the introduction of new combination therapies (Antiretroviral therapy and protease inhibitors) caused a decrease in AIDS related deaths by 45%.

While the number of HIV infected persons continues to grow, the number of people developing full-blown AIDS declined by 15% in 1996 (Centers for Disease Control, 1998). The CDC estimates the number of Americans infected with HIV is between 650,000 and 900,000.

AIDS is fundamentally different from many illnesses and health conditions. As a society, we tend to assign blame to AIDS patients and there is an underlying feeling that AIDS patients are somehow responsible for their own fate. On the extreme side, there are people who actually believe that AIDS is a punishment
for homosexuals living an unconventional lifestyle.

This becomes obvious when you look at the history of the virus. First believed to affect gays and intravenous drug users, it was many years before AIDS research and education was taken seriously in the United States.

When AIDS first became a public health concern in the early 1980’s, there was an overwhelming silence among elected officials and government research facilities who failed to give proper attention to a disease thought only to affect homosexual men. Within a few years, it became evident that HIV was spreading like wildfire into all segments of the population.

AIDS was finally recognized as a major health threat after it began spreading into the mainstream population through tainted blood and heterosexual contact. Even then, the American Red Cross decided to risk further infection rather than implement standardized testing procedures to protect blood donor recipients from receiving tainted blood. When Ryan White became infected through a blood transfusion, a number of public health efforts were aimed towards educating the American people about the nondiscriminatory nature of the AIDS virus.

Regardless of the intended message or result, AIDS patients are still subject to harsh speculation and judgment by the American people. AIDS patients continue to face discrimination for leading a lifestyle that made them vulnerable to contracting a highly stigmatized disease. Perhaps it is still believed on some level that AIDS patients were selected by God to suffer the consequences of their “chosen” lifestyle.

Individuals diagnosed with the AIDS virus are frequently abandoned by their family and loved ones. This isolation often leads to major depression that can sometimes be a symptom of the illness. Most insurance companies refuse to cover HIV infection. Those that do cover HIV or AIDS limit treatment and benefits so severely that patients are for all practical purposes, uninsured.

Current trends in the transmission of HIV show that younger people are contracting HIV. More than 50% of new AIDS cases occur in people under the age of 25. These young people could presumably live relatively healthy lives if they have a chance to benefit from early intervention and treatment.

This new and disturbing trend makes it critical to pass legislation allowing people with HIV and AIDS to receive appropriate medical care in a timely fashion. Young people should have unrestricted access to care without the barriers that come with managed care.

Under current Medicaid policy, HIV patients are not eligible for benefits until they receive a diagnosis of full-blown AIDS (AIDS Action Council, Washington, D.C., as cited in Marwick, 1998). Although new treatment protocols and medications are very promising to AIDS patients they are most effective when taken in the early stages of HIV infection. New combination therapies cost between $12,000 and $20,000 annually. Without insurance coverage, clearly only the wealthiest members of society can afford such treatments.

TennCare, Tennessee’s version of Medicaid has done a relatively good job of helping AIDS patients get the medical care they need. Like most managed care enrollees, AIDS patients are subjected to the lengthy pre-approval process and gate-keeping procedures. Volunteer organizations such as Nashville Cares employ several people specifically for the purpose of obtained pre-certification for AIDS patients so they can obtain the medications they so desperately need. The AIDS community has become a closely-knit one.

Most chronically ill people do not have the same benefit of volunteer organizations willing to take such an active role in the treatment plans and care of their illnesses.

There is no effective system to care for those with chronic conditions in the United States; as a result, much of the care that is available is fragmented, inappropriate, and difficult to obtain. In comparison with acute conditions, chronic conditions call for a different kind of care: an integrated network of professional expertise.

Chronic conditions do not always get worse; the health status of a person with a chronic condition can improve, deteriorate, or shift in either direction. The goal of chronic care is not to cure; rather, it should help individuals with chronic conditions maintain independence and a high level of functioning (Robert Wood Johnson Foundation, 1996).

Chronic illnesses are the most costly expenditure in the health care marketplace. Chronic conditions are much more costly to insurance plans and disproportionately use much more of their financial resources. Persons with chronic conditions account for 69% of hospital admissions and 55% of emergency room visits. 70% of the $612 billion spent annually on health care can be attributed to persons with chronic health conditions (Robert Wood Johnson Foundation, 1996). The indirect economic costs of chronic illness is approximately $234 billion annually in addition to the $425 billion in direct medical costs of providing medical care (Robert Wood Johnson Foundation, 1996).

Chronic conditions are qualitatively different from acute illnesses and must be treated as such. An individual with high blood pressure may just require prescription medication. Couple that with a liver disorder, and suddenly this patient can not be treated in the traditional (pre-approved) manner.

Prescription formularies are a one-size-fits-all solution to a diverse population with individualized needs. Any deviation from a standard treatment protocol requires hours of unsubsidized human resources and can cause irreparable damage to patients. The time required for utilization review may present additional complications to a patient suffering with a chronic health condition.

People with chronic health conditions report a number of problems obtaining needed medical care. In a survey conducted by the Gallop Organization and the Robert Wood Johnson Foundation, 38% reported they could not afford necessary medical care. 19% reported that the service was not available to them when they needed it, and 13% felt the quality of the service was so poor they wouldn’t use it. People with chronic illness also reported feeling overwhelmed by the rigid structures of their insurance policies.

Unfortunately, individuals have few options when it comes to reporting wrongful actions and disputes regarding health insurance benefits. As a result, the only viable solution remains in the courts, a time-consuming, costly process. This could be medically and financially devastating to some patients, especially those infected with HIV who need timely treatment in order to maximize their chances for leading a healthy life.

Each person deserves individual consideration based upon his or her personal medical history. The best course of treatment can not be determined based upon a simple, economic cost benefit analysis like those used in the utilization review process by large insurance companies.

Clearly, the most effective treatment for one patient may not be the best for another.

We are dealing with people, not widgets!

©️ Elyssa D. Durant 2018


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