In the early years of the HIV/AIDS epidemic, the physicians and nurses who provided care to patients with this puzzling and clearly complex infection identified the benefits of specialized knowledge of the virus and management of the symptoms associated with its attack on the immune system.
In the early years of the HIV/AIDS epidemic, the physicians and nurses who provided care to patients with this puzzling and clearly complex infection identified the benefits of specialized knowledge of the virus and management of the symptoms associated with its attack on the immune system. They also stayed attentive to the various treatment trials and advocated for the inclusion of their patients in strenuous efforts to support longer life. When the first successful drug regimens were made available outside of trials, these providers honed their skills in monitoring complex schedules and drug interactions to ensure that treatment did not become more devastating than the disease itself.
Both HIV nurses and physicians have established associations that support continuing education and specialization in HIV, and multiple studies have documented the impact of provider experience in this field on the quality of care received by HIV-infected patients. The question remains whether those who need care-at least in resource-rich environments such as the United States-should be directed exclusively to those who can document specialized knowledge of the disease. Considering this issue, there are at least 3 potential areas of consideration: initial diagnosis, ongoing management of infection, and pediatric care.
INITIAL DIAGNOSIS OF HIV INFECTION
Certain sociodemographic groups have been shown to be at increased risk for HIV infection. As such, it might be tempting to suggest that making an HIV diagnosis should be in the hands of experts who have particular knowledge of the groups at highest risk, such as men who have sex with men, particularly in the African American community; substance abusers, particularly those who inject; and women who engage in sex for money. Certainly, health care providers who see patients from one of these risk groups should be knowledgeable about HIV infection and maintain a high index of suspicion about risk-taking behavior. These providers must also be prepared to push for HIV testing while counseling about prevention. However, such an approach does not ensure timely identification of all cases of infection.
While screening tests are widely available in the United States-and the recommended policy now is for all primary care providers and emergency departments to offer HIV testing to anyone seeking care-it is not clear that the policy is being followed. Unless every professional in a primary care setting is knowledgeable about HIV infection and is willing to talk about it with any patient seeking care, too many patients either will not be offered the test or will be offered it in a way that does not encourage follow-through. Alternatively, setting up specialized “HIV testing counselors” in larger emergency departments and practices may ensure that the interaction is based on sound information. However, this adds another step to each visit and thus to the expense, and such a staff addition is not feasible for smaller practices.
The management of HIV infection, including appropriate prescribing of antiretroviral agents, management of symptoms associated with either the disease or its treatment, and ongoing management of basic age- and gender-appropriate primary care, can be complex. It is worth considering whether every infected patient should be seen by someone specializing in HIV care, who can make sure that the latest research results and information are being incorporated into treatment decisions.
There are, however, problems with this approach. Not every infected person lives where there is a sufficient HIV population to support a specialized practice. While regular referral to a specialty practice, even if some distance away, might fill this gap, the local primary care provider must also be knowledgeable in order to avoid unnecessary failures in management. Furthermore, specialized physicians come primarily from internal medicine backgrounds, specifically infectious disease. While they may be knowledgeable about HIV and AIDS and opportunistic infections, it is not clear that they are sufficiently experienced in the full range of primary care to be the sole care provider. For example, like uninfected women, women with HIV/AIDS also need adequate gynecological care, including annual screening for cervical cancer. If most of their care is being given by an HIV specialist, a system of support to ensure other aspects of care is essential.
One of the reasons HIV specialization arose was because of the initially complex prescribing needed for antiretroviral therapy. With the current armamentarium of approved medications and simpler dosing regimens, the need for this specialized knowledge has begun to fade. Alternatively, the combinations of drugs and the larger numbers of available drugs with associated adverse effects and reactions could be an argument for continued and even expanded specialization. Perhaps developing the specialists into consulting physicians and moving routine care to those with a commitment to ongoing primary care would be a better use of resources. This may become even more important as the HIV population ages, with the associated development of chronic diseases that have little or nothing to do with HIV infection per se. Management of aging musculoskeletal, cardiovascular, and pulmonary systems also requires a level of expertise that many with HIV expertise have not developed. Should we prepare a separate group of HIV geriatricians? Or should we improve the transfer of information between those providing ongoing care to the aging population and the AIDS experts?
The strongest argument for HIV specialization may be in the management of infected infants and children. The challenge of managing infection in a developing child is huge and should not be undertaken lightly. However, the number of infected children is steadily falling, with well under 100 newly diagnosed cases a year in the United States that are concentrated in a few locales. Even in Florida, California, and New York, which have the largest number of children living with HIV/AIDS, the number of infected children is so small that developing and maintaining specialized expertise is an immense challenge.
Given the socioeconomic distribution of families at highest risk for having an HIV-infected child, the burden of travel to specialty centers may be overwhelming. It can be argued, however, that only a specialized center would have the knowledge about HIV/AIDS in particular and about the developing child and family in general to make survival to a healthy adulthood possible. Certainly, experience with other infrequently occurring childhood conditions has supported specialized centers for children who, for example, have hemophilia, inborn errors of metabolism (eg, phenylketonuria), cardiac anomalies, or orthopedic problems. For children who live any distance from such specialized centers, however, a home base for care of the ordinary challenges of childhood is essential.
BUILDING A SYSTEM
The answer to the challenge of specialized care for those with HIV infection is not a new one. There needs to be a system that links accessible, comprehensive primary care with the needed specialists for consultation to support that care. The link needs to be seamless for both the primary care provider as well as for the patient and family. This may seem obvious, but it is something rarely achieved in the “non-system” of care in the United States. The patient or family should not have to undergo extensive re-registration or eligibility reviews when moving from their primary care site to the specialist and back again. The primary care provider should not fear “losing” patients to the specialty center when asking for a consultation. The primary care provider needs sufficient familiarity with HIV so that the specialist referral is not an attempt to dump the patient elsewhere. The reimbursement for care should be adequate at both primary care and specialty sites and allow for the use of appropriate additional consultations with nutritionists, social workers, public health nurses, psychologists, or others.
There is little to be gained by arguments about whether HIV specialists are needed-they are. The better question is where and when an HIV specialist should provide ongoing care or intermittent consultation, and how to ensure that primary care providers are sufficiently knowledgeable about HIV infection that screening is done, diagnosis is timely, and ongoing HIV care is integrated with all of the recommended prevention services and the patient’s comorbidities.
By all means, we should maintain a strong cadre of physicians, nurses, and other health professionals who are up-to-date on what is known about HIV infection and its management. But we must also continue to provide support and learning opportunities so that all other health care professionals are knowledgeable as well and can incorporate HIV-related care for their patients with the help of timely consultation. Only the most complex cases or the most severely ill patients would need ongoing care at specialty centers. Systems such as this can be facilitated through electronic connections, such as telehealth consultations and efficient transfer of medical records. Such an approach is perhaps more comfortable for the younger generation of health professionals reared on computers.
The answer to the challenge of specialization in HIV requires coordination of health provider education; payment and information systems; and the commitment of health professionals to respond to changes in how, when, and where they give care. Perhaps the care providers who can adapt most readily to such changes are the “specialists,” who can provide the best care for persons with HIV/AIDS.