HIV treatment adherence and outcomes improving among HIV-positive transgender people

HIV-positive transgender people are just as likely to stay in care, take their medication and have similar outcomes as other men and women living with the disease, according to new research from the Perelman School of Medicine at the University of Pennsylvania and published online May 30 in Clinical Infectious Diseases. The study - which looked at almost 37,000 patients at 13 HIV clinics from 2001 to 2011 in the US - suggests an encouraging shift from earlier work documenting poor retention in care and drug adherence in transgender people, a high risk group for HIV.

In the retrospective analysis, led by Baligh R. Yehia, MD, MPP, MSHP, a clinical instructor in the division of Infectious Diseases at Penn Medicine, researchers found that transgender people receiving care had similar rates of retention, antiretroviral therapy (ART) coverage and HIV suppression as nontransgender men and women over the 10 year period.

Dr. Yehia says there are several factors that could explain why care and suppression rates have improved and become more equal. “It’s a combination of things: there have been great advances in HIV therapy and management over the last decade and increased attention from advocates and groups on identifying people infected with HIV quickly, linking them to care in a timely fashion, and starting treatment earlier,” he says. “In addition, there is an increased focus on lesbian, gay, bisexual, and transgender (LGBT) health in general.

“Over the past five years, leading federal institutions and national organizations, including the Institute of Medicine, American Medical Association (AMA), and the American Association of Medical Colleges, have emphasized the importance of improving the health of LGBT populations by understanding and addressing their unique health care needs, identifying research gaps and opportunities, and developing educational activities to address the needs of LGBT trainees, faculty, staff, and patients.”

For the study, Dr. Yehia and colleagues, including Kelly A. Gebo, MD, MPH, of the Johns Hopkins University School of Medicine, retrospectively looked at 36,845 patients from 13 clinics within the HIV Research Network, a consortium that cares for HIV-infected patients across the nation, from 2001 to 2011. Of the group, 285 self-identified as transgender.

Researchers found that transgender persons were retained in care, received ART, and achieved HIV suppression 80 percent, 76 percent, and 68 percent of the time during the 10 years, respectively. Similarly, men were 81 percent, 77 percent and 69 percent, while women were 81 percent, 73 percent, and 63 percent.

Antiretroviral treatment (ART) improves the health and prolongs the lives of persons with HIV. Studies that included mostly heterosexual HIV-discordant couples (one partner is HIV-infected and the other is not) have shown that ART use by persons with HIV can reduce the risk of sexually transmitting HIV to others by over 90%. Current U.S. HIV treatment guidelines support initiation of ART for persons with HIV for their personal health benefit and to prevent transmission of HIV infection. To maximize individual and public health benefits, high levels of adherence to ART are critical.

HIV treatment adherence and outcomes
Antiretroviral medications can also be used to prevent HIV acquisition by selected partners of HIV-infected persons after they have had sex (nonoccupational postexposure prophylaxis, nPEP) or before they have had sex (preexposure prophylaxis, PrEP). Use of antiretroviral medications for both nPEP and PrEP may reduce the risk that a person becomes infected with HIV after having contact with a person with HIV.

The forthcoming recommendations will include guidance for clinicians and community-based HIV prevention providers about early initiation of ART for personal and public health benefits. Nearly all forthcoming recommendations for clinicians are consistent with these recommendations from existingfederal government guidelines for clinicians:

Transgender patients were more likely to be young, Hispanic, and have men who have sex with men as their HIV risk behavior compared to men and women living with HIV.

Little is known about the health outcomes of HIV-positive transgender people compared to other groups, but they are among the groups at the highest risk of the disease, with the highest percentages in blacks and Hispanics. In 2009, the Centers for Disease Control and Prevention reported newly-identified HIV infection rates of 2.9 percent for transgender persons compared to 0.9 percent for nontransgender males and 0.3 percent for females.

Past studies in the transgender population have documented decreased engagement in care, low ART coverage, and poor adherence to medication. Such disparities have been tied to discrimination, social isolation and the community’s concerns about ART’s effect on hormone replacement therapy—which is used to boost testosterone or estrogen levels as a way to bring one’s secondary sexual characteristics more in line with their gender identity.

Adherence to Antiretroviral Treatment

Adherence to treatment regimens is also crucial to improve health, increase survival, and prevent the spread of HIV to partners and offspring. ART lowers the amount of the virus in the body—an estimated 77% of patients in the United States taking ART have suppressed viral loads. Still, only half of persons with HIV are in care and only 28% of all persons with HIV have virus levels that are fully suppressed. Because having a lower viral load decreases the risk of transmission to others, it is essential that clinical providers and community-based HIV prevention specialists encourage good ART adherence and help persons with HIV identify practical strategies to maintain good adherence over the long term.

The forthcoming recommendations will provide guidance for clinicians and community-based HIV prevention providers about regularly assessing and supporting ART adherence. Many of the forthcoming recommendations are consistent with these recommendations from existing federal government clinical practice recommendations for:

Clinicians serving persons with HIV

  Create a multidisciplinary team to support long-term adherence (e.g., nurse, case manager, social worker, pharmacist, counselor), when feasible.
  Assess patient readiness to start ART, including possible barriers to adherence.
  Review the benefits of good adherence and potential problems of poor adherence (e.g., health problems, drug resistance, and risk of transmission).
  Offer ART regimens that are highly effective but reduce pill burden, dosing frequency, and dietary restrictions as much as possible.
  Involve patient in decisions about treatment regimens.
  Ensure that patient understands the treatment plan when starting ART, including drug regimen, dosing schedule, dietary restrictions, potential side effects, and what to do when missing doses or experiencing side effects.
  Acknowledge the difficulties of maintaining perfect adherence, prepare for situations that could impair good adherence, and encourage disclosure of poor adherence.
  Provide education and tools to support good adherence.
  Provide referrals for services that address factors that may impede adherence, such as lack of health insurance or other resources to cover ART costs, drug and alcohol use, and mental illness.
  Use viral load data to assess adherence and motivate attainment of adherence goals.
  Prepare for, assess, and manage ART side effects at each clinical visit.

Patients can, however, safely receive ART and hormone therapy, notes Dr. Yehia, and that seeking care from providers familiar with both will help to ensure they have safe levels of the therapies.

“Many physicians don’t feel comfortable taking care of transgender individuals because they are unfamiliar with their specific health needs and concerns,” says Dr. Yehia, who also serves on the AMA LGBT advisory committee. “We have a come a long way, but more needs to be done. We need more education and research to help fill this knowledge gap and improve familiarity with transgender health issues.”

The four common effectors of HIV treatment adherence are:

1. Medication regimen complexity,
2. Interaction or doctor - patient relationship,
3. Patient related factors and
4. System of care

1. Medication regimen complexity: HIV treatment regimens are very complicated and often require the patient to take several medications at varied doses with restrictions on food intake and activities. Pill burden is one the major reason for medication non adherence. Research also shows that less adherence can lead to various side effects apart from the prognosis of HIV to AIDS.
2. Interaction (or) Doctor - Patient relationship: A supportive relationship between a Doctor and his/her Patient will help the patient overcome many barriers including the psychological barrier. Two way communications, prompt respons e from doctors, able to reach health care providers immediately, are some ways to strengthen patient - doctor relationship and will also enhance trust. Ability for doctor/ health care provider to monitor patient’s well being and adherence will enhance treatment results.

3. Patient related factors: Patient related factors also play a major role in the efficacy of the medication and handling these factors well can help improve medication adherence.

Next steps are to identify the proportion of individuals not in care, and to work on getting them engaged.


Steve Graff

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University of Pennsylvania School of Medicine


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