Martin Shapiro is professor of medicine at the University of California, Los Angeles. Samuel Bozzette is professor of medicine at the University of California, San Diego, and senior research associate for the Veterans Affairs San Diego Healthcare System. Both are also senior natural scientists at RAND, where they codirect the HIV (human immunodeficiency virus) Cost and Services Utilization Study.
Not all people with HIV are treated equally. Among adults with HIV in the United States, women receive inferior patterns of care compared to men, as do blacks and Latinos compared to whites, the uninsured and Medicaid-insured compared to the privately insured, and heterosexuals and injection drug users compared to gay and bisexual men.
Those are some of the results from the first nationally representative study of Americans with HIV. The study, conducted by RAND and a consortium of public and private research institutions, has demonstrated systemic disparities in HIV care across all regions of America. This evidence shines the spotlight on a socioeconomic chasm in the U.S. health care system--a chasm that probably undermines the care for those with other chronic illnesses as well.
The variations in HIV care are especially disturbing given recent clinical advances that have made HIV infection a highly treatable disease. Appropriate medical care can now offer patients the hope of long-term survival and can prevent costly, unnecessary complications. But to receive these benefits, patients need to be in continuous contact with providers who can monitor their health and modify their treatments, particularly as newer medications become available. Even a brief interruption in treatment or a lag in receiving new therapies can place a patient at risk of serious complications--and even death.
Disparities in HIV care can be associated with insurance status, gender, race, ethnicity, exposure group, income, education, age, and even geographical region. The challenge now is to eliminate these disparities. We propose comprehensive national efforts to improve access to HIV care for all Americans. We also must ensure that lags in distributing new treatments to disadvantaged groups are not repeated with each improvement in treatment.
With the HIV Cost and Services Utilization Study (HCSUS), we have begun to sketch the first national portrait of the people in treatment, the costs of treatment, and the care delivered. In early 1996, the HCSUS team interviewed nearly 3,000 HIV patients in 28 urban and 25 rural areas across the continental United States--a representative sample of the national HIV caseload. Since then, we have monitored the treatment of the survivors and detailed the disparities in care across socioeconomic groups and types of insurance coverage.
We are currently examining many other issues as well: the extent of mental health and substance abuse disorders among HIV patients, the extent to which HIV is becoming resistant to antiretroviral drug therapies, the attitudes of patients toward these therapies, the use of alternative therapies, patterns of oral health care, and HIV care in rural areas. We are also studying how insurance plans affect costs, how provider knowledge and specialization affect care, and how health outcomes might be predicted. All told, there are 13 HCSUS research teams working on more than 50 manuscripts to document the results.
Researchers at RAND, UCLA, and UC San Diego have led the national effort. Sandra Berry and the RAND Survey Group have managed a complex field operation, with most of the fieldwork being conducted by the National Opinion Research Center. Sally Morton and the RAND Statistics Group have collected the data, applied weights to them to represent the national population, and guided the analyses of investigators scattered across a multitude of institutions.
To date, the study has produced good news and bad news. The good news is that the cost of HIV treatment is not inordinate. In fact, the annual cost of caring for people with HIV accounts for less than 1 percent of national health care expenditures. The bad news is twofold: First, many people with HIV still go untreated, even though we can afford to treat everyone; and second, many people who do receive treatment do not receive the quality of treatment that should be made available to everyone.
Our study sample represents the 231,400 HIV-infected adults who received care during early 1996 in the continental United States at facilities other than emergency rooms, military hospitals, or prisons. Among these patients, an unexpectedly high 59 percent met the Centers for Disease Control case definition for acquired immune deficiency syndrome (AIDS), even though natural history studies indicate that only about a third of those with HIV have full-blown AIDS. In addition, over 90 percent of those in our sample had conditions indicating a need for antiretroviral medications. Clearly, the vast majority in treatment had advanced disease, and it appears that many Americans with early or unrecognized HIV infection are not receiving regular care.
The patients in our study were strikingly different from the general U.S. population. They were disproportionately male, black, and poor: 77 percent were men, about half were whites, a third were blacks, and almost a sixth were Latinos. Almost half had annual household incomes of less than $10,000 per year, placing them in the bottom quintile of the U.S. population. Nearly half were gay or bisexual men who reported no injection drug use. Nearly a quarter reported injection drug use, with or without other risk behaviors. Another 18 percent reported only heterosexual sex, and 9 percent reported no known risk factors.
There were striking differences across the HIV-infected groups as well. Compared with men, the women were more likely to be young, black, unemployed, impoverished, underinsured, and less educated. Compared with those in other exposure groups, gay and bisexual men were more highly educated, more likely to be employed, had higher incomes, and were more likely to have private health insurance (see figure). Gay and bisexual men were also more likely to live in the West, the only region where a majority of the patients had private insurance.
Nationwide, just 32 percent of the patients had private insurance, 48 percent had public insurance, and 20 percent had no insurance at all. Of those with public insurance, 29 percent had only Medicaid (the federal and state program for the poor) and 19 percent had Medicare (the federal program for the elderly and disabled) usually in conjunction with Medicaid. As expected, those with advanced disease relied more heavily on public insurance (see figures).
This variable and fragmented financing of care will pose an increasingly serious problem as the prevalence of HIV infection grows among groups that are less likely to have private insurance. One of the most daunting health care policy challenges of the next decade will be to find ways to expand access to HIV care while simultaneously implementing new and fiscally sustainable approaches to underwrite the cost of that care.
The most conspicuous example involves the newer, potentially lifesaving medications known as protease inhibitors and nonnucleoside reverse transcriptase inhibitors. In 1996, when the HCSUS team began measuring the quality of care received, 41 percent of all eligible patients were not receiving these new therapies, and the disparities were pronounced. Among those not receiving the therapies were 51 percent of women (but only 39 percent of men); 56 percent of blacks (but only 32 percent of whites); 54 percent of the uninsured, and 47 percent of the Medicaid-insured (but only 28 percent of the privately insured); and 51 percent of heterosexuals (but only 37 percent of gay and bisexual men).
In less than two years, the overall proportion of eligible patients failing to receive these new therapies dropped precipitously: from 41 percent in 1996 to 15 percent in early 1998. Yet those still lacking the medications in 1998, as shown below, included 22 percent of women (versus 13 percent of men); 20 percent of blacks (versus 12 percent of whites); 21 percent of the uninsured, and 19 percent with Medicaid (versus 9 percent with private insurance); and 19 percent of injection drug users (versus 13 percent of gay and bisexual men).
Lags in distribution to traditionally disadvantaged groups also meant they waited much longer to receive these treatments. From the beginning of 1996, women waited, on average, 13.5 months, while men waited 11.2 months. Blacks waited 13.5 months, while whites waited 10.6 months. The uninsured waited 13.9 months and Medicaid beneficiaries waited 12.4 months, while the privately insured waited 9.4 months.
The HCSUS team found other signs of mixed progress. For example, many people with HIV need to take preventive medication against Pneumocystis carinii pneumonia (PCP), a common opportunistic infection. From 1996 to 1998, there was a modest overall decline in the proportion of those not receiving necessary PCP treatments. Most important, some gaping disparities in 1996--based on gender, race, and insurance status--had been almost eliminated by 1998. However, with respect to PCP treatments, heterosexuals continued to fare worse than gay and bisexual men, and Southerners and Northeasterners continued to lag Westerners and Midwesterners.
It is also important for HIV patients to make at least one doctor visit every three months. As of 1998, Latinos and the uninsured were least likely to make doctor visits this frequently: 27 percent of Latinos and 25 percent of the uninsured failed to make regular visits, compared with just 16 percent of patients overall (as shown above).
In theory, patients who make regular doctor visits should not need to use emergency rooms for nonemergencies or need to be hospitalized much at all. It is interesting, however, that Latino HIV patients used neither emergency rooms nor hospitals disproportionately. Those who did use both types of facilities disproportionately were women, injection drug users, the uninsured, and the publicly insured. In addition, blacks used hospitals disproportionately.
Members of health maintenance organizations (HMOs) enjoyed a pattern of care very similar to others with private insurance, except that HMO members were even more likely to have received appropriate PCP medications. Patients with the most education and higher incomes also had more desirable patterns of care.
Several conclusions emerge from these findings. First, being uninsured and HIV-infected places an individual at serious risk. We found that insurance status partially explained many of the disparities among racial, ethnic, income, and education groups and at least some of the disparities for women. Second, Medicaid does not provide the quality of care provided by private health insurance. In fact, those with Medicaid were not much better off than those with no insurance at all. Third, the disparities endured by blacks and Latinos cannot be fully explained by insurance status or other characteristics. Fourth, disparities can also depend on gender, exposure group, income, education, age, and region.
Because of the overlapping groups in our study, some might be tempted to simplify the story of HIV in America. One might claim, for example, that black drug abusers receive the worst care, whereas gay white men receive the best care. But even if such a dubious claim were true, it completely ignores the majority of Americans with HIV. Among the 231,400 people represented in our sample, there are roughly 53,000 blacks who are not injection drug abusers, 25,000 white men who are not gay or bisexual, and 42,000 Latinos and other ethnic minorities who span all risk categories. Comprehensive strategies to improve HIV care in America must take into account all patterns of deficient treatment and recognize that no single characteristic of disenfranchised populations is responsible for all deficiencies.
This $6.7 billion accounted for less than one percent of the $700 billion in U.S. health care expenditures in 1996. This proportion is not excessive, considering that HIV infection, at its peak, accounted for about seven percent of the total potential years of life lost in the United States--which is more than pneumonia, influenza, chronic obstructive pulmonary disease, diabetes mellitus, and chronic liver disease combined. Therefore, the crisis in expenditures for patients with HIV disease appears to be one of financing, not cost.
Nonetheless, any financing reforms must account for two foreseeable shifts in costs. First, hospital care was the biggest expenditure in 1996, followed closely by pharmaceuticals. Most likely, hospital expenditures will decline and pharmaceutical costs will rise with the increasing use of highly effective antiretroviral therapies.
Second, many Americans with HIV do not receive medical care even once every six months--a situation that underestimates the national costs of appropriate care for all HIV-infected adults. Although roughly 335,000 patients saw a doctor during the first six months of 1996, there were between 650,000 and 900,000 people with known or unknown HIV infection in this country at that time, according to the Centers for Disease Control. Quite possibly, the numbers in care have increased somewhat since 1996. Getting more people into medical care obviously will increase costs in the short run, but in the long run it will likely result in net savings by avoiding hospitalizations and emergency room visits, preventing complications, and reducing the costs of lost productivity due to HIV infection.
First, the public sector is already paying for the lion's share of HIV care, yet deficiencies remain because of the lack of a comprehensive funding mechanism and the attendant variability in the care provided by different funding sources. Therefore, we need to establish national goals and approaches. A common financing strategy would remove the incentive of some state programs, for example, to cut corners on costs. And if the evidence shows that providing more care actually decreases national costs in the long run, then eliminating disparities in care would be quite straightforward, because everyone would stand to gain.
Second, there is an urgent need to identify those not yet in treatment and to provide them with care for HIV disease. The costs to both the individual and society could be enormous if those currently not in treatment remain outside the health care system until their disease is very advanced and they are very ill.
Third, HIV care will continue to evolve. New treatments will be needed to sustain the lives of those for whom existing therapies do not work. We need to do a much better job to prevent the kinds of lags in access to newer therapies that occurred with the protease inhibitors.
Fourth, the disparities in care that we have seen across categories of insurance, race, gender, and other characteristics are unacceptable. We need to set very specific targets to eliminate these variations, and we need to collect data to monitor the extent to which they occur.
Finally, HIV disease is far from unique. There should be studies, on a scale similar to HCSUS, of a number of other chronic diseases to provide nationally representative data on the care that people are receiving. Diabetes mellitus, coronary artery disease, epilepsy, chronic obstructive pulmonary disease, and some of the common cancers typify the kinds of diseases that should be studied in this way. If we are to safeguard the health of all the American people, we should allow zero tolerance for disparities in the care rendered for HIV and for other chronic diseases as well.
"The Care of HIV-Infected Adults in the United States," New England Journal of Medicine, Vol. 339, No. 26, December 24, 1998, pp. 1897-1904, Samuel A. Bozzette, Sandra H. Berry, Naihua Duan, Martin R. Frankel, Arleen A. Leibowitz, Doris Lefkowitz, Carol-Ann Emmons, J. Walton Senterfitt, Mark L. Berk, Sally C. Morton, and Martin F. Shapiro, for the HCSUS Consortium.