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

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

C. Access Concerns

Among the Health Care Community Discussion reports that focused on access problems, 37 percent conveyed concern about being denied access to care due to pre-existing conditions and other non financial barriers to insurance; 27 percent reported challenges in access to care; 20 percent did not feel their coverage was adequate, lacking preventive care and mental health coverage; 18 percent pointed to provider shortages; and 16 percent disparaged a system where health care for many Americans is only accessible through hospital emergency rooms (see Figure 5). Most of the reported barriers to access are cost related, described in the previous section. A group in Bethesda, Maryland, stated, "Access to quality health care is determined by ability to pay rather than need." Many Health Care Community Discussion groups concluded that the large numbers of uninsured Americans drive access problems. The report from the Unitarian Universalist Congregation's Meetinghouse in Fort Wayne, Indiana, highlighted, "...the plain and simple truth that there are too many uninsured." A potluck gathering in Kingston, Rhode Island, agreed, stating, "The central health care issue of our time is access to affordable, high quality primary care."

Pre-Existing Conditions

Numerous participants cited pre-existing conditions as a significant barrier to accessing adequate, affordable care. In Wisconsin Dells, Wisconsin, one man spoke about his mother's struggles to acquire insurance coverage. He said: "My mother is epileptic; she has been all of her life. This is not a choice she made, this is a condition...but because of her condition she is denied coverage. It's not that she is just not covered for her epilepsy issues, she is denied for all her health concerns, prevention included. She is uninsurable. Yet I know of few people who are healthier or tougher. She takes excellent care of herself, but [is] still uninsurable."

Individuals also discussed the effect that being "uninsurable" has had on their lives. At a "coffee and talk" gathering in San Diego, California, one 61 year-old woman explained that she crosses the border into Tijuana, Mexico, to receive care because she "can't afford [insurance] due to pre-existing conditions." In West Lafayette, Indiana, at a "small gathering of friends and neighbors," another couple described their son's struggle to find employment with health insurance benefits because he had Hodgkin's Lymphoma at age 17. Now an adult, he "has trouble finding a job with insurance benefits, because of his previous disease, even though he has successfully recovered."

Other Health Care Community Discussion participants shared similar stories about insurance coverage denials due to conditions ranging from high blood pressure to asthma. In Birmingham, Alabama, insurance companies deemed one man uninsurable because he took medication to lower his cholesterol and high blood pressure. This man had sought out private insurance only after he was laid off and could not afford to pay $3,500 a month to insure his family under COBRA. In Missoula, Montana, a participant related her struggles to acquire insurance for herself and her four-year-old daughter. This piano teacher had "several health conditions, including asthma." After giving birth to her second daughter, she and her husband, who is a musician employed by a local music store, took a second mortgage on their home to cover their medical bills. At age 3, their daughter had open-heart surgery and, at age 4, "is now uninsurable." She lamented, "No mother should have to say her daughter is 'uninsurable.' We provide education to all children but not health care? It just doesn't make sense to me." The Missoula group report further explained, "The family's household income is just above Montana's SCHIP [State Children's Health Insurance Program] income limit. They are now in a situation where they will soon have to choose between paying health insurance or [their] mortgage."

Emergency Rooms

The shortages described above leave many Americans without a reliable primary care physician, which in turn leads more Americans to rely on emergency rooms for health care, even for non-urgent matters. At a local coffee shop in Keene, Texas, one individual described, "More people need to have proper medical care so they don't run to the emergency room when they have a medical problem that is not an emergency."

Health Care Community Discussion participants agreed that emergency rooms often became a primary source of care for both uninsured and insured populations. When discussing uninsured populations, participants characterized emergency rooms as "the norm." At a home in Milwaukee, Wisconsin, attendees lamented, "If one has no health insurance, one does not go until problems are so bad they require a trip to the ER, which could have been avoided. In Wisconsin, care cannot be refused at an ER. So people wait and go to the ER, which is more expensive a service in general." A school nurse in Prescott, Arizona, said she sees "so many kids at the school who have no insurance and just go to the ER for strep throat." Even insured participants spoke about having to use emergency rooms for non-urgent care because "people cannot get in to see their doctor." As a result, a group of psychiatrists in Tucson, Arizona, wrote, "Urgent Care and Emergency Room[s] [are] used for primary care or minor acute care. This also results in dangerously long waits for true serious urgencies/emergencies."

Comprehensive Coverage

Several participants who actually had insurance deemed it as inadequate and failing to cover additional "essential" services. A group at a local church in Bristol, Virginia, reported, "There was also general consensus that mental health cannot be separated from physical health and that some level of mental health care services should be available to all citizens." Further, the host of a Health Care Community Discussion in Port St. Lucie, Florida, recounted, "One attendee (ex-military) expressed [that] particular attention should be paid to the uninsured with mental health problems, and she especially worried about all the servicemen and women serving in various parts of the world." A participant in Albany, California, discussed dental care, noting that "Dental care is not included as part of health insurance, but it is just as important. The mouth and teeth are essential parts of the body!" About 5 percent of all group reports expressed concern regarding a woman's inability to obtain and/ or afford preventive health care. A group of friends from Planned Parenthood in Denver, Colorado, remarked, "Overall our group would like to see more coverage for women's health care. Some of my friends have stopped using birth control because it is too expensive. They literally are making decisions about birth control and pap smears and filling up their gas tank or buying groceries. It is so sad that these days women cannot protect themselves the way they should be able to. Women's health care is very preventative and if my friends had access to those services it would be a lot less expensive in the long run." A North Dakota women's group held a Health Care Community Discussion and reiterated this point by bluntly stating, "Preventative health care is an important part of being healthy and lowering money spent on health care for citizens and the state. The primary preventative health care services should be covered and routine: birth control, breast and cervical cancer screenings, sexual treatment infection screening and treatment."

Lack of adequate insurance for long-term care was mentioned in a number of Health Care Community Discussions. A group of senior citizens in Zephyrhills, Florida, described their fear that "providing long-term care can bankrupt a couple leaving the surviving spouse with no resources left." In Mountain View, California, a participant at a house Health Care Community Discussion of friends and neighbors "was concerned that her long-term care policy cost has doubled and she was unable to get information on what the policy covered."

Many participants agreed that their insurance should more adequately cover preventive services and alternative medicine. A Health Care Community Discussion group in Chesapeake, Virginia, reported that their group had agreed it was "costly to pay out of pocket for preventive health screenings" and that there was often a "long wait time for preventive health care appointments with primary care providers (over six month wait period for well exam)." The Chesapeake group also felt that "[p]rimary [c]are [p]roviders have limited education in preventive health care delivery systems, such as the many types of therapies: massage, physical, occupational, emotional, nutritional and non-invasive procedures." Several groups expressed their desire for a comprehensive system in terms of outcomes rather than benefits. "Health care reform must include as a goal the elimination of racial/ethnic health care disparities," declared one Dayton, Ohio group. Participants often spoke about difficulties in navigating the health care system due to linguistic and cultural barriers. A Health Care Community Discussion organized by a San Francisco, California HIV/AIDS health organization, explained: "[A]ccess to health care is not the only major issue with our health care system. Once you acquire access, you may still have to deal with cultural incompetence or a lack of quality health care, particularly if you have linguistic barriers, are part of the transgender community, or experience health issues that require special knowledge or training (such as survivors of torture)." Participants at a Health Care Community Discussion in Devon, Pennsylvania, described linguistic and cultural barriers as often "subtle, subjective and [e]mbedded in care," further explaining that, "As our society becomes even more multi-cultural and diverse, however, these issues will only increase."

Health Care Provider Shortages

A high proportion of Health Care Community Discussions elevated the issue of shortages in human capital throughout the health care system. At a packed room in a local union hall in Bellingham, Washington, attendees reported, "We have a serious shortage of primary care providers – which includes physicians, nurse practitioners, and other qualified professionals." A participant in Albuquerque, New Mexico, spoke about the effects of provider shortages on the health care system. She said, "There are not enough nurses to cover the beds on hospital floors, and because of this, hospitals are unable to admit patients that need admitting. Also, there are a record number of doctors leaving the field because 1) they have to put in enormously long hours because of the shortage of doctors, and 2) the shortage causes a lack of consult backup needed to properly care for patients. As more doctors leave the field, the situation worsens."

Groups in rural regions frequently mentioned that shortages were exacerbated in their communities. An Oklahoma gathering discussed how the outpacing of physician retirements over new replacements resulted in "more and more rural citizens...being left with fewer and fewer health care options."

Rural participants also spoke to additional hurdles in accessing care, namely transportation. As expressed by a professor at A.T. Still University in Kirksville, Missouri, "Rural communities have unique health care issues [that] need to be addressed. Simply getting to the doctor or hospital can present difficulties due to the distance that needs to be traveled. When specialized care is needed, an office appointment may turn into a day-long affair." According to some participants, the high cost of training has deterred people from entering the health care field, especially in lower-paid professions that focus on primary care. A Health Care Community Discussion at a home in Hackettstown, New Jersey, discussed how "the cost of med school and setting up a practice is monumental. Try to get these prices down, so that doctors don't have to spend years trying to pay off these loans, and so perhaps find it less immoral to bill insurance companies."

Other participants expressed particular concern over shortages in mental health professionals. At a meeting hosted by the National Association on Mental Health Illness (NAMI) in Indianapolis, Indiana, participants elaborated on the shortage of mental health care facilities in many communities, "For many people affected by mental illness...there are only a few Community Mental Health Centers, and even private psychiatrists are scarce in many areas of the country. State hospitals take those with the most severe problems and they, as well as the Community Mental Health Centers, are under funded and often short of doctors. It is more a matter of finding any treatment at all than it is in making choices."

Some participants worried about the high cost of malpractice insurance driving out doctors and creating physician shortages in hospitals throughout the country. A group in Irvine, California, noted, "Litigation and [the] high cost of malpractice [have] created shortages of physicians in specialties such as obstetrics." A participant from Harrisburg, Pennsylvania, offered his opinion on the impact of malpractice, "We have more medical schools in PA, yet fewer doctors. Graduating doctors leave PA because it is not a friendly state to practice in."

People unable to find doctors that accept their insurance reported a different type of "shortage." At a library in Rutland, Vermont, discussants explained, "People with Medicaid don't have the same access to qualified providers or prescription care because many doctors won't accept patients with Medicaid because of the timing of getting paid...." Similarly, physicians attending an Oklahoma State Medical Association forum in Oklahoma City, Oklahoma said, "Additionally, lower Medicare reimbursement rates and insurance red tape are causing more and more health care providers to stop accepting certain insurers and Medicare. As a result, even those with health insurance are facing more limited options in health care."

Conclusion

Overall, discussants across the country remarked that comprehensive reform means more than just increasing the number of insured people and decreasing costs. From guaranteeing eligibility for those with pre-existing conditions, to covering all essential medical services, to ensuring the adequate supply of health professionals and primary care or non-emergency settings, participants agreed that true reform must address the many obstacles to access that Americans face every day.