Americans Speak on Health Reform: Report on Health Care Community Discussions

III. Concerns About the U.S. Health Care System

E. System and Other Concerns

A large percentage of the Health Care Community Discussion reports pointed to structural and systemic issues as the heart of the problems in the U.S. health care system. The fact that most people get their health insurance on the job was both praised and criticized in 37 percent of the reports that focused on system problems. The perception that the system espouses the wrong values and orientation (such as a lack of focus on prevention or the health system's market orientation) nearly tied with concerns about its complexity as topics of discussion (29% and 27% respectively) (see Figure 7). Over one in five (21%) of the groups focusing on system problems discussed the gaps in the system and the uninsured.

Lack of Emphasis on Prevention

Many groups believed that the current health care system does not focus on health. A group of businesswomen in Apple Valley, California, described their belief that, "The 'Health care System' has more focus on being sick than healthy. It's really a 'Sickcare System.'" The Maine Medical Association held a gathering in Augusta, Maine, with 70 various professionals and expressed, "We have the best sick medicine care and not the best preventive care." A house meeting in Nashville, Tennessee, agreed that "The system does not seem to have prevention and health as a goal. It seems to be about something else entirely." A gathering in Happy Valley, Oregon, speculated on the reason for this, "For the most part, neither providers, patients, nor third parties have a financial incentive for health outcomes (wellness, prevention, etc.)." A Baltimore, Maryland gathering summarized their major concerns, "Preventive care services were not available to the individuals who were uninsured. However, some insured individuals had also not received all the required preventive services. Another problem with preventive services was also the cost; one guy said he was waiting to win the lottery before getting his screening tests. The Health Care Community Discussion revealed that most individuals did not even know what was required and therefore the decision was that education was very important." At a meeting sponsored by the South Dakota Issues Forums in Rapid City, South Dakota, a nurse stressed, "There needs to be a new paradigm shift from disease care to prevention."

Many groups tied the low emphasis on prevention to our high health care costs. A group in Kirksville, Missouri, felt, "There simply is no more pragmatic way to deal with the escalating cost of health care than to shift emphasis from spectacular attempts to deal with very advanced disease to prevention of disease in the first place." Another submission from Michigan City, Indiana, reiterated these thoughts, "The group could go on for weeks about how much money the government and the public would save if everyone had access to preventative care. Many, many stories were offered about people who suffered through needless hospitalizations because they were unable to get the insulin or blood pressure medicine that they needed, or because they had conditions that were not diagnosed early enough." A much smaller percentage of groups disagreed with this view and felt that preventive care would not help save any money at all. A group of participants at a meeting in San Fernando Valley, California, expressed this idea, suggesting that, "preventive care should be a priority, but is not cost effective. If we control diabetes, cholesterol, and blood pressure, people will live much longer and develop more serious diseases such as cancer and chronic lung disease. They will need more expensive medications and heart surgery, etc."

Various Health Care Community Discussions vocalized the sentiment that a healthy lifestyle is the, key to prevention and prevention, in turn, decreases overwhelming and expensive doctor visits. In Littleton, Colorado, a local coffee shop gathering included participants with different backgrounds, including major insurance company employees, a private Medicaid contractor, parents of special needs children, and the self-employed. They all agreed, "There is no incentive to be healthy in our current system. People who are fat (1 out of 3 Americans) and smoke pay the same as those who make an effort to get preventive care, exercise, and lead a healthy lifestyle." A 20-year public school teacher at a dinner Health Care Community Discussion in Gardiner, New York, noted, "Parents...are so uneducated themselves about proper nutrition that they just pass their own poor eating and health behaviors on to their kids..."

Complexity and Lack of Transparency

The belief that America's health care system is too complex and not transparent emerged as a consensus at various Health Care Community Discussions. Groups reported frustration with the lack of information about the quality, cost, and coverage of services. Attendees at a gathering in North Miami, Florida, articulated that these frustrations stemmed from "[l]ack of consumer knowledge" and "not being able to trust what they are told." In particular "they didn't know how insurance worked and they didn't know enough about their health to know what they could doctor themselves and what really needed professional attention." A Health Care Community Discussion with family and friends in St. Louis, Missouri, described how the system "is fragmented and lacks continuity; is difficult to access and is not user-friendly for patients and providers...its communication and documentation systems are chaotic." In Annapolis, Maryland, the group told the story of: "A widow who lost her husband unexpectedly after he was struck down by a brain tumor. She not only lost the family's primary breadwinner [and] her lifelong companion but was thrust into the confusing world of sorting through paperwork, analyzing bills and figuring out the process of dealing with hospitals and insurance companies."

Health Care Community Discussion groups voiced specific concern over the lack of knowledge regarding the cost of procedures. An employee gathering at a software company in Cambridge, Massachusetts, discussed this point, "[T]he biggest problem in paying bills was the fact that nobody seems to know what their health care should cost. Nobody could cite a situation where they understood their medical bill or knew whether the insurance company was providing proper coverage for rendered services." Participants at a Health Care Community Discussion at West Virginia University in Morgantown, West Virginia, echoed this frustration, "You know what it will cost you for a hamburger at McDonald's. We need to know what an office visit will cost, what a procedure will cost." A participant at a Health Care Community Discussion in Boulder, Colorado, shared a personal health care crisis to illustrate this point. He described, "I fell off a roof in September and was just terrified to go to the hospital. A few hours there and you owe $2,700 - I don't understand how they come up with these bills, I don't understand them. I started crying just thinking I had to go to the hospital."

Ignorance about the services covered by their insurers as well as their costs surfaced. Some Health Care Community Discussion participants complained that there is no easily accessible information to let patients know what is or is not covered under their particular insurance plan. For example, a participant in Scottsdale, Arizona, claimed to have "incurred more than $1,000 of unexpected costs for unnecessary allergy testing, most of which was not included in her health plan. Had she known before she agreed to testing that it was not covered, she would not have agreed to the testing." Numerous Health Care Community Discussions concluded that a transparent health care system, where patients are always aware of costs and the coverage of services, should be a reform priority.

Residents at Asbury Methodist Village, a retirement community in Gaithersburg, Maryland, specifically complained about Medicare forms: "Insurance forms from Medicare and supplemental insurance are too complex and information is not verifiable by patient/family (e.g., list name of practice or use of partner's names as Service Provider, not doctor's name). Medicare relies on patients to verify information and notify of inaccuracies. Most of us simply look only at 'You May Be Billed' column. If costs are covered, no questions are raised." A doctor from Birmingham, Alabama, "mentioned that it took him 2 hours to figure out his mother's Medicare Part B. More regulations and red tape also make it more expensive for doctors to practice and encourages them to join larger practices instead of going to rural areas."

An overly complex payment process laden with paperwork has clogged the system according to many participants. During a Health Care Community Discussion at a school in York, Pennsylvania, participants discussed how "billing is so complex that it is a distraction from patient care. It wastes resources on the provider side with staff devoted solely to payments and keeping track of billing pitfalls to avoid denial of payment." Participants in Las Vegas, Nevada, also echoed this sentiment: "Paying medical bills is time-consuming and frustrating. Providers use different billing systems and terminology, so each bill needs to be reviewed to ensure the provider billed the correct insurance company, has correctly applied insurance payments and adjustments, and that the EOB [Explanation of Benefit] from the insurance company matches what the provider has submitted."

Health Insurance through Employment

Many Health Care Community Discussion participants were satisfied with the current employer based insurance system. In Temple Hills, Maryland, they found, "The majority would like to stay with employer-based coverage only." Participants from a meeting in Red Lion, Pennsylvania felt, "The employer should still be the primary source of health insurance but the government should be more aggressive against the health insurance companies and regulate costs." At a breakfast meeting hosted by a health care technology company in Wayne, Pennsylvania, the participants "...also agreed...that eliminating employer-based coverage and converting to another system would be a cumbersome and complicated task. Conversely, some felt that the employer's role in employee health should actually increase; that employers should become more involved in wellness and prevention programs because unhealthy staff lowers productivity."

Yet, numerous Health Care Community Discussions expressed concerns about an employer-based health care system. The "Harold Street Yes We Can Group" from Houston, Texas, felt that an employer-based system is an outdated model. They summarized, "It's based on a system developed by businesses post-WW II, as a means of competing for employees when wages were frozen. We are the only industrialized country that ties health insurance to employment." Another group in Green Bay, Wisconsin, agreed with this point, "All felt that coverage by health insurance should not be dependent on employment; it's exactly when one loses employment that he cannot afford to pay for health insurance." A bipartisan group from Doylestown, Pennsylvania, forcefully recommended, "Employer-based coverage should be abolished or available only as an elective chosen by both the employees and employer. It should not be the main source of coverage."

Several groups noted problems of an employer-based system when people lose their jobs. A diverse Health Care Community Discussion group in Tampa, Florida – including physicians, small business owners, retirees, and parents – were concerned that "if a person loses their job, they are penalized twice: first, in losing their job and then by losing their health insurance." A house meeting in Ann Arbor, Michigan, shared one family's personal struggle: "With the loss of her job, [she] also lost all these benefits. While COBRA was available, she was not in a position to afford paying $1,100 - $1,200 a month to continue to carry those benefits, so her family went without health, dental, and vision insurance for just over four months."

Other Health Care Community Discussions focused on how an employer-based system limits job mobility. A Madison, Wisconsin, gathering summarized that "one of the other problems with access is that it is so often tied to employment. Since it is now rare to remain with the same job for a lifetime, employers have little incentive to provide health care that covers pre-existing conditions or preventative care." A conference call Health Care Community Discussion held by a home care and hospice organization in Connecticut recommended, "Portability of health insurance should be a main goal because people change jobs often. The new health care system should allow people to access health care regardless of whether they are working."

Health Care as a "Business"

Several Health Care Community Discussions expressed concern that our system treats health care as a commodity rather than a public good. A local gathering in Kingston, Rhode Island, noted, "These problems are systemic problems. The concept of health care as a business rather than as a basic human right or public service for the greater good is at the root of many of these problems." The group report from an acupuncture class in Portland, Oregon, attributed the system problems to corporate medicine: "We also felt strongly that the health care system in its current state is clearly NOT FOR US. It is not designed to benefit or help us. Who is it for? Who does it benefit? We suspect that the answer is big corporations, because none of us know any individuals who feel that the health care system really meets their needs. It's bureaucratic, disempowering, overwhelming, confusing, and frustrating in more ways than we can list."

The perception that insurance companies and accountants run the health care system – rather than doctors and nurses – emerged as a common theme among the Health Care Community Discussion reports. A group who met at a coffee shop on the South Side of Pittsburgh, Pennsylvania, articulated this point: "The consensus was that the source of these problems is that health care is a for-profit system in which decisions about the type and amount of care are made mostly by insurance companies rather than by patients and care-givers." Some participants felt this severely hindered the quality of care a patient receives when visiting a doctor. Attendees at a meeting in Hamilton, New Jersey echoed this sentiment. They reported, "The health care system and the care a patient receives is driven and controlled by the insurance companies, not the doctors. The doctors are held captive by the insurance companies."

Other Health Care Community Discussions highlighted concerns over lobbying, specifically how the lobbying of doctors and hospitals raises ethical issues. A participant at a Lafayette, Indiana gathering expressed this opinion, "One of our group spoke to the ethically questionable relationships among lobbyists, public policy makers and profit making health care companies, which he believes precludes decision-making in the best interests of the public."

Conclusion

A number of Health Care Community Discussion participants concluded that the problem with America's health care system cannot just be reduced to cost, access or quality; the system as a whole requires structural and large-scale reform. Overall, participants advocated for a new system that promotes wellness rather than just managing sickness; a system that is less complex and more transparent; and a system that does not leave them in fear of losing their insurance when they lose their job. Some participants further hoped for a system that treats health care as a public good rather than a market commodity.