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HIV physicians have stayed busy in the last decade just keeping up with the latest treatment and pharmaceutical advances that will keep their patients alive. But when clinicians focus entirely on HIV patients’ medical treatment, they might be missing the big picture, according to one long-time HIV physician.
"Having treated HIV patients for well over 15 years, I recognize that certain aspects of care were glossed over," says Joseph G. Jemsek, MD, of the Jemsek Clinic in Huntersville, NC. "And when these aspects are glossed over long enough, they become very important in terms of the patient’s well-being and satisfaction with care." Jemsek refers to aspects of care involving social issues, nutritional counseling, physical therapy needs, and psychological assessment.
Before Jemsek opened his own clinic for the holistic treatment of HIV patients, he relied on other clinicians to take care of his patients’ ancillary needs, although he was never satisfied that this patchwork of services was in his clients’ best interest. "Since HIV is such a complex illness with multiple systems involved and very heavy psychosocial issues, I felt the only way to do a satisfactory job was to coordinate all these elements of care under one roof," Jemsek says.
The clinic, which is close to a year and a half old, now has more than 400 patients, with a growth rate of eight to 15 new patients per month. Here are some of the disciplines and services provided by the clinic in the interest of treating the patient holistically:
• Nutritionist: Jemsek Clinic has a registered dietitian who discusses nutritional and dietary supplement information with HIV patients. The dietitian stays up to date on herbal compound research. "We’re open to what herbal compounds people are taking, but we want to make sure there’s no harm in them," Jemsek says.
The clinic also has bought a Dexa machine, manufactured by GE Medical Systems of Milwaukee, which can analyze segments of a patient’s body and give measurements of fat and body cell mass. "It’s an expensive investment, but with the possibility of lipodystrophy and lipoatrophy, this procedure is proving very helpful in terms of designing therapies for our patients," Jemsek says. With the machine’s data, Jemsek and the nutritionist can determine which nutritional and anabolic therapies would be best for a particular patient.
• Neurological testing: Working with a physiatrist, the clinic can offer patients neurological testing when the patient has insurance that will cover the service. The clinic occasionally will provide the testing at no charge to Medicare or Medicaid patients who are not covered for the service. "This will allow us to give objective measurements of a predominantly sensor distal neuropathy associated with HIV itself and with more commonly used potent nucleosides: DDI and D4T and DDC," Jemsek says. "I’ve treated some patients in the past with drugs, and their neuropathies have improved because we’ve improved their disease," he notes. "Other patients have had early, dramatic, and painful neuropathy after a couple of weeks on the drugs." The physiatrist will analyze a patient’s neurological tests, which are conducted by a technician.
• Clinical research nurse: The clinic’s nursing staff includes a dedicated clinical research nurse. This position is in addition to several other nurses and two physician assistants.
Because scientific advances related to HIV and AIDS have been rapid and often crucial to providing the best quality of care to patients, the research position is essential and probably will be expanded to include a part-time research nurse, Jemsek says. "I think HIV medicine is generating more information and changing faster than any other field in medicine," Jemsek says. "It’s fascinating and captivates the imagination, and if you don’t stay involved with it from week to week, you do lose ground."
• Counselor: The clinic used to have an ordained minister provide once-a-week counseling services for patients. The minister, who was HIV-positive, was a real asset to the group, Jemsek says. Now that the minister is no longer available, Jemsek is looking to replace him with a person who has similar counseling experience and background. In order to ensure the position will remain permanent, the clinic is establishing a tax-exempt foundation with the goal of raising enough money to cover the counselor’s part-time salary. Jemsek says he hopes to hire a counselor who will work in the clinic three times a week, which will allow the counselor to see more patients than the previous counselor did.
• Psychological assessment: Depression is a normal consequence of HIV disease, and clinicians need to assess for this and help patients adjust to these changes in their lives. Jemsek and staff advise patients not to allow themselves to be overwhelmed by HIV facts. They recommend that patients call local AIDS service organizations or a counselor or close friend to discuss their feelings and fears. "You’ll find some people will reject you, and others will embrace you more," Jemsek says. "You only need a few friends, and you don’t need the whole world to understand your situation."
Jemsek typically asks patients two or three times during a visit if there is anything else they would like to discuss, something from their own agenda. This lets patients know Jemsek is open to hearing about their thoughts and feelings. Although AIDS no longer carries a relatively quick death sentence, there still are emotional and psychological issues that HIV/AIDS patients must address. "We don’t have quite the depths of depression and hysteria we’ve had in past years," Jemsek notes. "Nonetheless, it’s a lifetime illness, and people go through a series of steps with this."
• Cultural sensitivity: As the epidemic evolves, clinicians need to be more sensitive to issues that relate to women and minorities with HIV or AIDS. "I started noticing two to three years ago that, without exception, the heterosexual, non-drug-user women who came into see us had no idea that they were at risk for HIV," Jemsek says. "They were not sexually promiscuous, with generally no more than two or three partners."
Now women account for 30% of the Jemsek Clinic’s patient census. With this change in demographics, Jemsek and staff have had to learn how to counsel women to take greater charge of their lives by saying "No" when they are uncomfortable and how to stop feeling ashamed of their illness. "They say they feel dirty and feel ashamed, and they need to know that in a great sense they are blameless," Jemsek says. "They haven’t done anything knowingly to put themselves into this situation, and they haven’t done anything for which they should be criticized by society."
Jemsek admits that he had to undergo a personal cultural change in attitude during the early years of AIDS, when most of his patients were white homosexuals. "I was a heterosexual Midwestern homophobic whose curiosity and commitment to medicine overcame that when I became involved with my new clientele in the early 1980s," Jemsek says. "What working with HIV patients has taught me is compassion, and I learned how to be a better doctor because I became more involved with my patients."
Likewise, the clinic’s staff have been taught to be sensitive to issues that relate to minority patients. For example, some of the clinic’s African-American patients believe that the AIDS epidemic was caused by U.S. government actions. While staff are willing to listen to patients’ concerns, they insist that the patients focus on the present and what can be done to help them cope with their disease. "If someone wants to come see us, it’s time to get real with what’s going on," Jemsek says. "Otherwise, it’s a waste of time."