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On the front lines of caring for
people with AIDS
Debra Johnson, NP, MPAS, PA-C
The author is the President of PAAN, the Physician Assistant AIDS Network, and works at T.H.E. (To Help Everyone) Clinic, which serves Ryan White Title I and III HIV-infected populations in Los Angeles, Calif. She is also in private practice with Anthony Mills, MD, and is Associate Professor of Clinical Medicine at the University of Southern California and Western University. She has indicated no relationships to disclose relating to the content of this article.
Between 1978 and 1980, a cohort of 6,875 homosexual men were studied at the University of California, San Francisco, to determine the incidence and prevalence of a new T-lymph tropic virus, type III/lymphadenopathy-associated virus (HTLV-III/LAV), which was later called human immunodeficiency virus (HIV).1 Just a few years earlier, in 1971, the Comprehensive Health Manpower Training Act had authorized support for PA training, and in December 1972, the House of Delegates of the American Medical Association adopted “Essentials for an Educational Program for the Assistant to the Primary Care Physician,” which established standards for the education of PAs. In 1972, the Duke University PA program was one of the first to be approved to train PAs in primary care medicine.2
PAs and AIDS
In July 1981, the New York Times reported an outbreak of a rare form of cancer among gay men in New York and California; this condition was referred to at first as the “gay cancer,” but medically it is known as Kaposi’s sarcoma. At about the same time, emergency rooms in New York City began to see an increase of seemingly healthy young men presenting with fevers, flulike symptoms, and pneumonia caused by the organism Pneumocystis carinii. About a year later, the CDC linked their illnesses to blood transfusions and receptive anal intercourse and coined the term AIDS to describe this new disease. In the several years after this, more than 1,600 cases of this strange, new disease were diagnosed, with close to 700 deaths.3 As the number of deaths soared and medical experts scrambled to find a cause and, more important, a cure, PAs were in the trenches providing care and comfort to those who were infected with, and affected by, HIV.
In 1984, Institut Pasteur, in France, discovered what they called the HIV virus, but it was not until a year later that a US scientist, Dr. Robert Gallo, confirmed that HIV was the cause of AIDS. Following the identification of this new retrovirus, the first test to detect antibodies against HIV was approved in 1985, and blood banks began testing donated blood. In 1986, zidovudine (AZT), the first antiretroviral agent, was released—followed over the next several years by four classes of drug treatments and more than 25 drugs. By the end of 1987, there were 71,000 confirmed cases of AIDS in the United States, resulting in over 40,000 deaths. Over the years, the treatment of HIV disease and its associated opportunistic infections and malignancies has become an increasingly complex and fast-changing field. In the early 1990s, AZT was found to dramatically reduce the transmission of HIV from pregnant woman to fetus—but also, in 1993, more than 75% of new AIDS diagnoses in women came via the addition of CD4 cell counts less than 200 cells/mm3 to the list of AIDS-defining criteria developed by the CDC. Invasive cervical cancer and pulmonary tuberculosis were also added to the list. In the clinic and in the hospital, PAs continued delivering care, conducting research studies with physicians, and pushing the envelope to develop a better understanding of AIDS.
The birth of PAAN
The diagnosis and management of HIV disease requires an understanding of the divergent characteristics of each patient, including risk of infection and symptoms, and a thorough consideration of the performance characteristics of a wide array of HIV diagnostic tests. From the beginning, the PA could be found in the front lines of this epidemic, ordering and interpreting tests, prescribing antiretroviral therapy (ART), and treating opportunistic infections. During this time, the PA profession began to experience a role expansion and an increase in specialization. Clinicians were needed to provide continuity of care to this new group of critically ill patients, and PAs were being positively recognized for their contributions to the workforce. The approval of reimbursement for PA services, including by Medi-Cal and Medicare, and the passage of legislation in many states allowing prescriptive privileges for PAs increased the desirability of this relatively new profession. Hiring PAs became the perfect solution to the problem of caring for people with AIDS—a cost-effective delivery system of quality health care to a largely indigent population.
Late in 1994, the first organized group of PAs practicing in HIV/AIDS care banded together to establish a national caucus of the AAPA that would become known as the Physician Assistant AIDS Network (PAAN). This organization provides colleague support, a place for interactions among PAs who work in HIV care, and educational opportunities for PAs to learn about HIV disease. PAAN offers a number of benefits, including lecture slide decks on “HIV 101,” instruction in how to take a sexual history, information about treating opportunistic infections, and advice on managing ART toxicities and side effects (http://www.paan.org).
The age of antiretroviral therapy
In 1995, the first protease inhibitor was released, and combination therapy with three or more antiretroviral agents decreased the morbidity and mortality of HIV disease and associated opportunistic infections. In 1996, at the sixth World AIDS Conference, physicians, PAs, other scientists, and people infected with or affected by HIV listened to David Ho as he announced that with ongoing ART, we might be able to eradicate HIV within 6 to 7 years. Finally the disease was becoming more manageable, allowing health care providers to turn their focus toward providing chronic treatment and maintaining health. The emphasis turned to living with HIV instead of dying from it, and PAs and other health care providers began looking at issues in long-term management. ART is complex to prescribe and difficult to take. These medications can have a profound influence on eating, sleeping, and work schedules, as well as on day-to-day interactions with other people. PAs are trained not only to provide good medical care but also to address the psychosocial issues that may influence the patient’s ability to comply with therapy. Maximizing adherence to ART has become an important aspect of providing medical care to people with HIV, and PAs have always provided that extra psychosocial touch. Adherence to ART is central to its efficacy and to preventing the development of resistance. However, taking a medication as prescribed—even an antibiotic over the short term—has long been recognized as difficult to achieve for patients with all types of conditions. Adherence is particularly difficult when medications must be taken multiple times daily, when the pill burden is high, or when side effects are bothersome. It is most challenging when the regimen is complex, intrusive, and long-term—which are the exact characteristics of ART. HIV combination treatments are among the most demanding, inflexible, and unforgiving of oral medication regimens. Because of their limited bioavailability and short half-lives, combination therapies must be taken at fixed intervals, usually every 8, 12, or 24 hours. Depending on the drug, ingestion may be with meals or on an empty stomach. Different antiviral drugs have different schedules that may conflict with each other, and the number of pills one person must take may rise to 20 or more per day. Many people on combination ART also take additional medications to prevent or treat opportunistic disease, and each of these other medications has its own scheduling requirements. Many of the medications cause GI problems, weight loss, and disrupted sleep, which in turn can lead to depression that further restricts the patient’s ability to adhere to therapy. Over the past several years, ART has been simplified to the point that patients may take as few as two pills at bedtime, but many barriers to successful therapy still remain.
PAs and their patients have always been aware of obstacles to the successful implementation of combination treatment, but only since the late 1990s have these garnered the attention they deserve. Chief among them are significant side effects, which can become intolerable and result in either intermittent pill-taking—which encourages the development of resistance, with consequent treatment failure and disease progression—or the cessation of therapy altogether. The HIV-positive patient may also have problems with housing, transportation, drug and/or alcohol abuse, or mental illness, all of which can constitute further barriers to care.
A seat at the table
The magnitude of the HIV epidemic and a complex, rapidly evolving standard of care raise the question of who should manage the care of HIV-infected patients. The AAPA believes that they deserve experienced providers who understand the complexities of the disease and who are up-to-date and informed about treatments. During the past several years, PAs specializing in HIV care have been increasingly recognized by physicians, HIV organizations, pharmaceutical companies, and other PAs. In 2001, the American Academy of HIV Medicine, urged by PAAN, recognized the important role played by nonphysician clinicians in the overall care of HIV-infected persons and began to allow PAs and NPs to hold board positions and have the ability to vote. A year later, the HIV Medicine Association elected to follow this trend and also allowed PAs and NPs to become voting members. Last year, for the first time, the CDC included a PA on the committee that evaluated and recommended changes to the guidelines for preventing HIV transmission. PAs now serve on advisory boards for pharmaceutical companies looking to develop marketing campaigns for new antiretroviral agents. They are being invited to moderate discussions and lecture to other clinicians about AIDS as well.
PAAN continues to play an important role in organizing and promoting the PA profession in the area of HIV care, but more can be done. In the early days of the HIV epidemic, the medications that PAs prescribed were dispensed under the physician’s name and license. Now we have our own DEA numbers. All PAs caring for people with AIDS should obtain their own DEA numbers if they have not done so already. This number permits drug companies and other organizations to track prescriptions written by PAs, and these figures help to validate our work and help us to continue to provide quality care to people who are infected with and affected by HIV—at least until we find a cure.
REFERENCES
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1. |
Jaffe HW, Darrow WW, Echenberg DF, et al. The acquired immunodeficiency syndrome in a cohort of homosexual men. A six-year follow-up study. Ann Intern Med. 1985;103(2):210-214. |
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2. |
Carter RD, Strand J. Physician assistants. A young profession celebrates the 35th anniversary of its birth in North Carolina. N C Med J. 2000;61(5):249-256. |
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3. |
Cichocki M. The history of HIV. [About.com.] Available at: http://aids.about.com/cs/aidsfactsheets/a/hivhis.htm. Accessed August 4, 2005. |
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