Majority of HIV-positive patients in US not receiving regular medical care

Only 45% of HIV-positive patients in the US are receiving regular medical monitoring, research published in the online edition of the Journal of Acquired Immune Deficiency Syndromes suggests.

The study also showed that a third of patients were not being linked with specialist HIV care within the first year of their diagnosis with the infection.

Individuals of black or Hispanic race were less likely to be retained in care than white patients. Especially low engagement in ongoing care was observed in injecting drug users.

“We found a large proportion of people with HIV are not in continuous care and such care is lower among black/African-Americans and specific risk groups,” comment the authors. “Implementation of effective linkage and care retention initiatives is needed to raise the percentage of PLWH [people living with HIV] in continuous HIV care.”

With the right treatment and care, the prognosis of many HIV-positive patients is now excellent.

US guidelines recommend that all patients with HIV should have regular clinic appointments involving measurement of CD4 cell count and viral load. The interval between these visits varies between patients. Appointments every three to four months are recommended for patients with a detectable viral load. Individuals taking HIV therapy with viral suppression (defined as below 400 copies/ml for the purpose of this study) should be monitored at intervals of no more than six months. Therefore, patients should have follow-up appointments at their clinic on at least two occasions in any twelve-month period.

Earlier research suggests that only 54% of HIV-positive patients in the US engage with regular care.

Investigators from the Centers for Disease Control and Prevention wished to establish a more accurate understanding of this important factor in patient outcomes.

They therefore studied data collected from 13 US states and territories from 2008 and 2009. The investigators defined engagement in care as two or more CD4 or viral load measurements at least three months apart in a twelve-month period. Data were further examined to see if retention in care differed according to demographic characteristics of HIV risk group.

A total of 100,375 individuals were included in the study. Only 45% had two or more care visits at least three months apart. Moreover, 41% of patients had no follow-up tests at all.

The proportion of patients retained in care differed by race. Whereas 50% of white patients received the minimum recommended standard of care, this fell to 41% for black patients and 40% for Hispanic patients.

Levels of care also differed according to HIV risk group. Heterosexual women (50%) were the group most likely to receive regular follow-up, followed by gay and other men who have sex with men (48%), heterosexual men (45%), and female and male injecting drug users (43 and 37% respectively).

Analysis of the patients retained in care showed that 89% had at least one viral load test per year. Results of these tests indicated that 77% of these individuals had a viral load below 400 copies/ml. However, only 53% of patients with regular follow-up sustained viral suppression over a two-year period.

Among the patients with a CD4 cell result, 63% had a count above 350 cells/mm³, but only 40% sustained a CD4 cell count above this level for two years.

Worryingly, 40% of patients with an AIDS diagnosis did not have any follow-up visits.

The investigators also established that a large proportion of patients newly diagnosed with HIV were not being successfully linked to care. Only 64% of patients who were diagnosed with the infection in 2008 had at least two follow-up appointments at intervals of three months. Once again, there were significant differences according to race, and the proportion was higher for white patients compared to those of Hispanic or black race (75 vs 69 vs 54%, p < 0.05).

A number of possible reasons for the poor rates of retention and engagement in care are provided by the investigators. These include a high prevalence of mental health problems in HIV-positive patients, as well as “stigma and some social determinants of health such as lack of health insurance, lower education, poverty, unemployment, homelessness and lack of transport”.

Virologically suppressive HIV therapy significantly reduces the risk of onward transmission of the virus. But the investigators believe their findings have potentially serious implications for 'treatment-as-prevention' strategies.

“The potential impact of treatment and viral load suppression on local HIV transmission is not fully realized with more than 40% of persons not in care, and presumably unsuppressed viremia. In addition, an estimated 20% of persons with HIV have not been diagnosed…accounting for high transmission potential due to their presumed unsuppressed viremia and higher risk behaviour compared to those aware of their infection.”

Hall HI et al. Retention in care of adults and adolescents living with HIV in 13 U. S. areas. J Acquir Immune Defic Syndr, online edition. DOI: 10.1097/QAI.0b013e318249fe90, 2012 (click here for the free abstract).