The Emotional Needs of HIV-Positive Patients
Gay or Straight, Control Is Paramount
Do gay HIV-positive patients have different needs than the non-gay HIV-positive patient?
We would assume that the gay community has different needs and wants pertaining to the prevention of HIV or living with it. But what is really important to the gay patient living with HIV vs. others who are living with the virus?
AskWhat issues are most important to the HIV-positive gay population? Being a heterosexual female physician treating more than 600 HIV-positive patients, 85% gay, I could probably determine what is important, but I might not be right.
So, I devised a survey for my patients, gay and straight, asking them to rank the following issues from the most important to the least important.
As a heterosexual female physician, I would have guessed that risk of exchange of resistant virus with partners, appearance, and high co-pays would be the three highest concerns.
However, I was wrong, as we physicians sometimes are. After all, we thought that the reason that patients forgot to take their antiretroviral combination was due to high pill count. We were wrong. The number one reason that patients do not take their medications is simple -- they forget! Life gets in the way.
At the completion of my survey, which involved 10% of my patients, the most common concern among HIV-positive patients, both gay and straight, was finding a doctor who understands. Aging and appearance were number two. Infections such as syphilis and community-acquired MRSA were the third most important, and the least important was finding a better way to protect HIV-negative partners, circumcision, and the need for post-exposure prophylaxis.
A Good DoctorMy patients wrote that the most important issue to an HIV-positive patient, gay or straight, is finding the right doctor. "If your doctor doesn't understand, then nothing will work." "A caring doctor is the most important." "A smart, compassionate doctor helps me get through everything else."
ControlWhy is the survey so different from what I'd thought? To help me with this issue, I phoned one of my patients, a therapist who works with HIV-positive support groups. Her response was, "The HIV-positive patient, whether he or she is gay or heterosexual, is most concerned about control." Once a person becomes HIV-positive, control of "everything" is taken away. Finding a physician who listens and works with the patient is one way to get back some control.
Additionally, an HIV-positive patient wants to be normal, does not want to look different, and does not want to be judged. Having a normal appearance and looking forward to a long healthy life is very important.
Finally, regarding the rest of my survey, and what appeared to be the least important, protecting others, my therapist patient stated that, "it is not an issue about protecting others; it is an issue of disclosure."
Good CareIn 2005, a study was published regarding early HAART (highly active antiretroviral therapy) for persons with HIV infection. It was found that physicians in 1996 who specialized in HIV care (both private and public) started patients on HAART earlier than physicians who saw less than 20 HIV patients per year. Additionally, it was found that patients who see HIV specialists do better, have fewer side effects, and remain stable longer than those patients who see a general practitioner with little experience in HIV care.
A study published in Medscape Pediatrics in 2000 revealed that a serious problem is the physician-patient dynamic. Patients often feel that they are not involved in their care, cannot get answers to their questions, and their physician is not knowledgeable enough to be treating their disease. Especially in HIV, some physicians are treating just to be treating.
The physician who is treating the HIV patient must be knowledgeable in the total aspect of the disease process, what treatment will do for the patient, and what side effects are to be expected. A patient who hears conflicting opinions from two or more physicians becomes more confused. HAART does help in the battle against AIDS, but the physician must be able to justify using these medications with side effects -- all the more reason for choosing an HIV specialist.
LipodystrophyIf a HIV-positive person starts to have the body habitus changes that can be a side effect of certain medications, or even the effects of being HIV-positive for many years, they can no longer be part of the "normal" crowd. Once again they have lost control. How one looks is important to everyone, not just the HIV-positive person. However, most of the negative population can control their looks at least partially. Unfortunately, the effects of HIV medications and HIV itself are more difficult to control and more costly to correct.
Lipodystrophy, lipoatrophy, and appearance have been very important issues since before it was actually labeled in the 1990's. Soon after the introduction of the HIV combination therapy (cocktail), patients began to notice changes in their appearance. Although in the late '90's this was already important to the HIV patient, many doctors did not address this issue since the patients were doing so much better -- in fact, coming back from the grave, so to speak.
However, as time progressed, and more and more patients were noticing the large belly, sometimes the buffalo hump and, more importantly, the loss of facial, arm, leg, and butt fat, physicians were "forced" to look at lipoatrophy and lipodystrophy as an important side effect of HIV treatment. It took several years, but finally, through retrospective studies, it was found that the biggest culprit for facial wasting was Zerit, though AZT can cause some wasting of peripheral fat, as well as Videx (but only when combined with Zerit -- a practice that is not used in the 21st century).
Thankfully, we have learned which antiretrovirals to avoid, if at all possible, and what to do if lipoatrophy is present. Several fillers are now available, most with patient assistance programs for temporary reversal of the facial wasting. Nothing at this point though has been found to replace the fat in arms, legs, and butts.
Protecting PartnersAre there reasons why an HIV-positive patient is not so concerned with protecting others? Is it because of fear of disclosure, and not that the patient doesn't want to protect the HIV-negative person?
In 1998, the Department of Medicine at Brown University School of Medicine in Rhode Island interviewed 203 patients presenting for primary care for HIV. It found that 40% of those patients had not disclosed their HIV status to any sexual partners. And surprisingly, in 1998, those patients who had not disclosed their status to a partner used a condom 57% less of the time.
The most common barriers to disclosure include fear of abandonment, fear of rejection or discrimination, loss of economic support, blame, and disruption of family relationships. The benefit, though, is an increased opportunity for support, improved access to necessary medical care and treatment, increased opportunities to discuss and implement HIV risk reduction with partners, and increased opportunity to plan for the future. Without being able to disclose or even to accept an HIV-positive diagnosis, a patient cannot address protecting others.
However, a recent study published by Psychosomatic Medicine revealed that consistent disclosure of HIV status and sexual orientation can improve CD4 cell counts over time, at least in patients who are HIV-positive and stressed by psychiatric illness and economic disadvantage.
Although there have been many reports regarding circumcision and the prevention of HIV in Africa, and post-exposure prophylaxis, many HIV-positive patients are unaware of this information or are unsure how these issues involve them. Since the African studies were performed on heterosexual males, should we assume that the same results would be found in the gay population? If post-exposure prophylaxis were to be used, would that mean that the HIV-positive patient would have to disclose his status to the partner?
Education on both issues is necessary for the HIV-positive gay male to consider them important to a person living with HIV.
Released in December 2006, two studies in Africa found that "circumcision is now a proven effective prevention strategy to reduce HIV infections in men." The study in Uganda included nearly 5,000 men and the study in Kenya included 2,800 men. None of these men had been circumcised prior to the beginning of the studies in September 2005.
Although the studies were scheduled to end in 2007, the plan changed in December when preliminary results showed that the men who were circumcised were about half as likely to contract HIV.
In the United States, about 77% of all men are circumcised early in their lifetime, and the U.S. Centers for Disease Control and Prevention (CDC) has not made a recommendation regarding circumcision in the U.S. Could this prevent some of the transmission of HIV? Is it important to the gay men who are not circumcised?
Post-exposure prophylaxis (PEP) in the non-occupational situation is now being used in some HIV practices, where people who have been exposed through unprotected sex or intravenous drug use request the therapy. Researchers in San Francisco evaluated the rate of HIV seroconversion after post-exposure prophylaxis with a 28-day course of two nucleoside reverse transcriptase inhibitors. A total of 702 men and women started PEP within 45 hours after the exposure. A baseline HIV antibody test was performed at the end of the study (12 weeks after baseline). HIV seroconversion occurred in seven patients (1%), all gay men.
Since this study, the availability of protease inhibitors and the common practice of using more than two antiretrovirals would most likely reduce the HIV seroconversions. However, the treatment has not been studied adequately to make this conclusion. It has been recommended, though, that PEP should not be limited to patients who know that they have been exposed to HIV (source partner is positive), but should be offered to anyone who has had a high-risk exposure, and should be started as soon as possible after exposure.
Health care access among individuals in same sex relationships differs nationwide, particularly for women. Surprisingly, men who have sex with men have health insurance rates that are lower than those of the general population.
The 1997 through 2003 versions of the National Health Interview Survey collected information on health behaviors and health care access in the U.S. It found that same-sex relationship men were two-thirds more likely to have seen a health care provider in the previous year. The reason for this difference, however, is not known. Possibly, same-sex relationship men are more likely to either be HIV-positive, or be concerned about prevention of HIV, therefore visiting their physician more often than opposite-sex relationship men.
Health insurance, according to the Institute of Medicine, is the most important factor in the U.S. that leads to appropriate health care. It is fortunate for the HIV-positive gay man to have health insurance and health care access at a higher level than most of the U.S. population. However, rising costs of health care premiums, lower reimbursements, and higher co-pays have led to more discordance between having insurance and having health care access.
Gay or Straight
Whether a person with HIV is gay or straight, the need for knowledgeable, understanding physicians, ways to improve appearance which are easy and cost effective, less stigma when disclosing HIV status, and, finally, better methods to prevent HIV infections are all necessary. It doesn't matter as to race, sexual orientation, or economic status of the person living with HIV. They all want what any person fighting any disease wants -- some measure of control over their lives, and someone who truly cares.
Dr. Marah Lee, DO, FACP, AAHIVS, graduated from Kirksville College of Osteopathic Medicine and had her internship and residency at St. Vincent's Hospital and Medical Center in New York City. She owns a private general practice, LifeWay (formerly Stratogen), in Fort Lauderdale. She has served as principal investigator for more than 60 research protocols, in all phases, and in 40 studies as sub-investigator. Certified as an HIV specialist by the American Academy of HIV Medicine, Lee is a past member of the National Board for the AAHIVM and currently serves as Florida AAHIVM board member. She is also the medical director and a sponsor for the past four SMART rides (a 165-mile bicycle ride from Miami to Key West), as well as previous bicycle rides, which raises money for four to five different agencies in the state of Florida that supports people with HIV/AIDS. This year in March, more than $380,000 was raised, which will be divided between four different agencies in Florida.
"Disclosure of HIV Status and Sexual Orientation Independently Predicts Increased Absolute CD4 Cell Counts Over Time for Psychiatric Patients," E. Strachan, et al, Psychosomatic Medicine 69:74-80(2007).
"Disclosure of HIV-Positive Status to Partners," M. Stein, et al, Archives of Internal Medicine Vol. 158 No. 3, February 9, 1998.
"When the Doctor Does Not Know the Answers to a Patient's Questions," H. Markel, MD, PhD, Medscape Pediatrics 2(1) 2000.
"Health Care Access Among Individuals Involved in Same-Sex Relationships," J. Heck, et al, American Journal of Public Health 2006:96 (6) 1111-1118.
"Is Nonoccupational PEP Effective?" G. Nagy, MD, AIDS Clinical Care 2006;4(1).
"Male Circumcision May Halve HIV Risk," M. Hitti, WebMD Health News 2006.
"Lipoatrophy Overview," TheBody.com
"Gender Dimension of HIV Status Disclosure to Sexual Partners: Rates, Barriers and Outcomes," a review paper. World Health Organization 2004
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