Rural Communities Struggle With AIDS

COMBINATION therapy with protease inhibitors and changing demographics of the AIDS epidemic have cast a spotlight on rural health care professionals' abilities to keep pace with the disease.

For example, in some rural areas of Georgia, Mississippi, and South Carolina, women make up one fourth of cumulative reported AIDS cases, well beyond the national figure of 15%. Yet, in those rural areas, few efforts are aimed at providing women with education about the human immunodeficiency virus (HIV) or testing to detect HIV infection.

In some rural California counties, nearly one fifth of physicians participating in a new study have never seen a patient with HIV, yet optimal patient outcomes have been linked with care from physicians experienced in treating HIV disease.

"There has been a dramatic increase in the number of HIV patients in rural areas," said Petra Liljestrand, PhD, of the Community Provider AIDS Training Project at San Francisco General Hospital in California and an investigator in the study. "But there is often the perception that HIV is not a problem in rural areas, which, in turn, can affect risk assessment and testing and counseling."

Liljestrand was among a group of researchers who presented findings during the recent annual meeting of the American Public Health Association in Indianapolis, Ind, on how HIV is affecting physicians and patients in rural areas of the United States.

A Centers for Disease Control and Prevention (CDC) investigator urged in an interview that the situation be kept in perspective. "Although the presence of HIV and AIDS in rural communities cannot be denied," said this researcher, "recent CDC surveilance data do not suggest rampant spread of AIDS in rural areas." Noting that HIV infection and AIDS are increasing throughout the country and that in 1996 there were 4605 AIDS cases reported in rural areas compared with 56556 in urban areas, the investigator said that "AIDS incidence is not disproportional in rural areas."

Even though most women affected by the epidemic live in large cities, Martha McKinney, PhD, a health care consultant and researcher in Richmond, Ky, said about 1 in every 16 women with AIDS lives in a rural area. The proportion is about 1 in 10 in the South, she noted.

"Yet we still know very little about the ways in which rural communities have organized to serve women with HIV and AIDS," McKinney said. In an effort to find out, the federal Health Resources and Services Administration (HRSA) commissioned McKinney to study 5 rural clinics that provide HIV-related and AIDS care in Georgia, Mississipi, South Carolina, Texas, and Washington State. She visited each clinic—none a public health facility—once for 3 to 4 days between February and May 1996 to interview health care professionals and patients and assess sources of social and emotional support.

Numbers of adult and adolescent female patients with HIV and AIDS the clinics served varied from a low of 15 at New Hope Clinic in Yakima County, Washington, to a high of 136 at Albany Area Primary Health Care in southwest Georgia. Women accounted for a low of 19% of patients with HIV and AIDS at the Valley AIDS Council in south Texas and a high of 48% at the DePorres Health Center in northwest Mississippi.

Since epidemiologic trends indicate women make up one fourth of reported AIDS cases in some of the study areas, McKinney said, she questioned what the clinics provided in the way of HIV education. "The short answer is not much [to men or women]," she said. Even though all the clinics offered general information on HIV, McKinney said only 2 made special efforts to target women in their educational programs. As for HIV testing for women, she said, "for the most part, it's not happening in these areas." When testing was offered, it often did not include pretest and posttest counseling, she said.

In most of the areas she studied, McKinney said a common barrier that kept women from receiving HIV testing was that they didn't see themselves as at risk for infection. And she was repeatedly told by health care professionals at the clinics that even women who may know that behaviors such as injection drug use and sex with multiple partners put them at risk lack awareness of therapies that can delay disease progression or fear the prejudice that HIV and AIDS still engender in many rural areas, so do not get tested.

Barriers to testing were reinforced, in the same areas of the country as the 5 clinics, among private physicians who also did not perceive their women patients as at risk for infection. "In some respects, cost and time considerations could explain some of the reluctance of private physicians to test women for HIV," McKinney said. "But it seemed to be that, like the women, [physicians] did not perceive the women in their area to be at risk for HIV." Many primary care physicians in the areas she studied "lacked training on the diagnosis, management, and treatment of women with HIV, or anyone with HIV, for that matter," McKinney said. Her study has been accepted for publication by the journal AIDS Patient Care and STDs.

Liljestrand conducted a telephone survey of HIV-care–related experience and practices among 102 rural California physicians, of whom 53% were in family practice, 29% in internal medicine, and 18% in general practitice. Of the participants, 27% reported receiving HIV training during residency. More than half the physicians in the study, 58%, have been in practice 17 years or longer. Yet almost one fifth, or 18%, said they had never seen a patient with HIV in their medical practices. About one third reported having seen between 1 and 3 patients with HIV, and 47% said they had treated 4 or more patients with HIV. However, two thirds of the physicians said they had not seen a patient with HIV in the last 6 months.

Some of the physicians' clinical practices corresponded closely with their experience levels, Liljestrand reported. Of the 35 physicians who said they had seen a patient with HIV in the past 6 months and who answered questions about the use of protease inhibitors and viral load tests, 43% had used both to treat their patients. But of physicians who had seen 3 or fewer patients with HIV, 26% had prescribed a protease inhibitor. The proportion rose to 75% of those who had seen 4 or more patients with HIV. Similarly, 22% of physicians who had seen 3 or fewer patients with HIV had used viral load tests, but the number rose to 83% of physicians who had seen larger numbers of patients with HIV.

The study also showed that physicians with recent experience were more likely to recommend HIV testing for patients with other sexually transmitted diseases and for those with cervical dysplasia. Recent experience had no relation to whether the physicians recommended testing for patients who used injection drugs and crack cocaine, had tuberculosis, or had more than 1 heterosexual sex partner.

Physicians with recent experience also were more confident about their ability to counsel and care for patients with HIV. In caring for asymptomatic patients, 33% of physicians with no experience treating patients with HIV, 34% with no recent experience, and 78% with recent experience were moderately or very confident about their abilities. But in caring for symptomatic patients, the proportions changed to 6%, 23%, and 68%, respectively, who expressed some degree of confidence in their abilities. The physicians' confidence in their abilities to prescribe antiretroviral treatment fell substantially, to 0%, 11%, and 25%, respectively.

Liljestrand said the study illustrates only "a small piece" of rural physicians' experience and practices. But she noted that the findings could be useful in developing educational or support programs for rural physicians.

In fact, researchers at the Mountain-Plains AIDS Education and Training Center at the University of Colorado Health Sciences Center in Denver have developed a case-study training program that boosted the activities of physicians, nurses, and physicians' assistants in several areas of AIDS care, including risk assessment and HIV counseling and testing.

An evaluation of 3 ways to present the information in the training program received HRSA support as a Special Project of National Significance, said Sara Martin, MPH, project manager at the Mountain-Plains AIDS Education and Training Center. "This is a basic, introductory curriculum," she explained. "It is not specifically about protease inhibitors or combination therapy. We're focusing on what rural providers need to do initially to respond to HIV."

The curriculum uses a case-study method that follows fictional, 19-year-old Peggy Jones through visits to her primary care physician that begin with seasonal hay fever symptoms of a runny nose and watering eyes—and a demeanor that conveys the feeling that "there was something else on Peggy's mind." The curriculum shows how to initiate a discussion about HIV risks with Peggy and how to explain the ramifications of HIV infection when Peggy's test result is positive.

Martin said the impact of the curriculum was evaluated with 1614 rural physicians, nurses, and physician assistants in 8 states who covered the material in a self-study method, a rural outreach team training program, or through audiovisual teleconferencing. Five months later, the researchers analyzed evidence that the curriculum had resulted in positive changes.

"Each method significantly improved knowledge, self-rated skills, and abilities and willingness to treat HIV patients," Martin said. The self-instruction method produced the greatest increases, she noted.

Health professionals in the training program also reported more activity than controls in a number of service areas: risk assessment, risk reduction counseling, HIV counseling and testing, counseling pregnant women, symptom recognition, physical assessment, and prophylaxis and antiretroviral treatment.

Martin said the case-study method was very effective. "We chose the story of a young woman to reflect the changing demographics of HIV. Rural providers really identified with this patient on some level." The curriculum and evaluation show, Martin said, that, "with effective education and training, rural health care providers can assume an active and essential role in HIV prevention, early intervention, and health promotion."

THE PRESIDENT'S Advisory Commission on Consumer Protection and Quality in the Health Care Industry has completed the first part of its work—a patients' "bill of rights"—and sent it to the White House. To the obvious disappointment of some, a single commissioner dissented from the final document on the grounds that some of the recommendations would impose intolerable health care costs on small businesses. The commission had aimed at presenting a unanimous report.

Accepting the 64-page report, President Clinton endorsed its recommendations and said he will propose federal legislation that, if it passes Congress, will effectively guarantee Americans a stronger voice in their health care. Some of the commission's recommendations could be implemented voluntarily by insurers and managed care plans.

The words were hardly out of Clinton's mouth before Republicans from both houses of Congress denounced any legislative proposals. In a joint statement, Senate majority leader Trent Lott (R, Miss) and House majority leader Richard K. Armey (R, Tex) said the proposals lead "straight down the path to the Clinton health plan rejected by the American people 3 years ago." Their statement presaged a political battle in the coming second session of the 105th Congress. Other criticism of the report came from such organizations as the Business Roundtable, which warned against further government intrusion into the health care marketplace.

But the report was hailed by other groups, such as the American Psychological Association, whose executive director for professional practice, Russ Newman, PhD, called it a "starting point for consumer protections." The National Council of Senior Citizens and several organizations representing people with disabilities likewise commended the report. Commissioner Thomas R. Reardon, MD, of Boring, Ore, chair of the American Medical Association's Board of Trustees, congratulated the commission's "bill of rights that makes patients the primary focus of our health care system." These rights, added Reardon, "are fundamental to preserving the sacred bond between patient and physician and will help restore the public's confidence in the entire health care system."

The commission was appointed by President Clinton in March 1997 to "advise the President on changes occurring in the health care system and to recommend measures as may be necessary to promote and assure health quality and value, and protect consumers and workers in the health care system."

The commission consists of 34 members from a wide variety of backgrounds, including consumers, business and labor representatives, physicians and other health care providers, health plan representatives, state and local government representatives, and health care quality experts. It is cochaired by Secretary of Labor Alexis M. Herman and Secretary of Health and Human Services Donna E. Shalala. The consumer bill of rights is the first report to come from this group. It is expected to issue a report on health care quality in the spring of 1998.

Although the commission's report is popularly referred to as a bill of rights for consumers, its full title is "Consumer Bill of Rights and Responsibilities." After identifying 7 rights that a health care system should ensure for patients, a final chapter is devoted to emphasizing that patients themselves have a responsibility for their health.

Among other behaviors, the report specifically lists not smoking, getting sufficient exercise, and eating a healthy diet. In other words, the report has recognized that an ideal health care system is a 2-way street, involving both providers and patients.

After the group put finishing touches to the report and just as the members seemed to be reaching unanimous agreement on the recommendations, Commissioner S. Diane Graham, chief executive officer of Stratco Inc, an engineering company in Leawood, Kans, said she could not support the report. Her objection was that the recommendation that consumers could appeal decisions denying care would require either a business or government to gather a wide range of data and would become an intolerable burden and hinder the ability of a small business to provide adequate health care benefits to its employees.

"Each added consumer right," said Graham in a recent interview, "adds to the cost of insurance, and I have no interest in the federal government being even more involved in my business than they already are."

Graham's point was that the commission had not fully analyzed the costs involved—and she said that she made her views known to the other commissioners in October, considerably before the report was to be presented, but was ignored at the time.

The panel did hear an estimate of the likely costs of information disclosure and external appeals, prepared by the Lewin Group, Fairfax, Va, a health care consulting firm. Noting that this was only a first cut at estimating the costs, Allen Dobson, PhD, vice president of the firm, said that the cost of administering information disclosure procedures ranged from a low of $0.59 to a high of $1.10 per insured person per month. Costs could be expected to decline with increased automation and standardization, he said. The cost of the outside appeals process was estimated at $0.03 to $0.07 per insured person per month.

Dobson also said that information is crucial to an efficient competitive market and that improved information about plans and providers could lead to lower costs through greater competition. If these costs were reduced by just 1 percentage point, he said, "the benefits of enrollee information could be enormous and would vastly overshadow the information production costs as estimated."

Noting Graham's point about the costs to small business, commissioner Paul Montrone, PhD, argued that the report had indeed taken account of the issue. "This was discussed. We have shown some sensitivity to this. Look over the entire document," he advised Graham. He said that the commission has recognized that costs will fall more heavily on small than on large businesses and that there should be some recognition of this. Montrone is president and chief executive officer of Fisher Scientific International, Inc, Hampton Falls, NH.

Commissioner J. Randall Macdonald, executive vice president for human resources at GTE Corporation, Stamford, Conn, said that, while he respected Graham's position, "No one sitting around this table is saying that what we have just put together is a mandate. I think it's premature to take the position that this is going to become law." He said he believed that market forces will drive these changes, reiterating, "I would hope that no one is walking away from here suggesting that we have decided to mandate anything."

Commissioner Stephen F. Wiggins, founder and chair of Oxford Health Plans, Inc, Darien, Conn, criticized Graham for waiting until the last minute before making known her disagreement with the report. "I don't think it's fair to the process. Nor do I think it's fair to each of us as individuals who have put an enormous amount of time into this not to get involved in the material debates that went on over each of the issues."

Commissioner Ron Pollack, executive director of Families USA, Washington, DC, a national nonprofit organization that speaks for health care consumers, declared, "I think that what we've produced here is significant and helpful to the American people, and I will do my part to support this document in any way I can." However, he indicated that in the effort to reach unanimity, some things he regarded as important did not get included. In an interview, he cited, for example, parity for people with mental health problems, elimination or raising of lifetime caps, and ensuring that plans not be able to discriminate on grounds of health status as to who they admit into plans and the premiums they charge.

Still, to illustrate the point that he supports the patient "bill of rights," Pollock cited a remark made to him by former Secretary of Health, Education and Welfare Arthur Fleming: "There are times that you have to rise above principle to get a higher principle." Said Pollack, "I think that higher principle is what we are trying to reach for here."