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Remaining in HIV care: Improvements in North America but much still needs to be done

3 January 2013

Potent combination anti-HIV therapy (commonly called ART or HAART) has greatly reduced deaths from AIDS-related infections in Canada and other high-income countries. The improvements in health brought about by ART are likely to lead to several decades of increased survival for a young HIV-positive person who starts therapy today and who remains engaged in his/her care and treatment.

Issues remain

Viruses and other germs disturb the immune system, causing activation and inflammation. Such responses by the immune system can be useful when it is initially responding to an infection. However, because HIV becomes a chronic infection and causes long-lasting changes to the immune system, the associated inflammation incited by this virus is only partially dampened by ART. Persistent low-level inflammation may affect the health of key organ systems such as the heart and blood vessels, bones, liver, kidneys and so on. It is therefore important that HIV-positive people, even those who are stable on ART, continue to see their doctors and receive regular medical care, physical exams, blood tests and other assessments, so that any psycho-social or medical conditions that arise can be quickly identified and managed.

Valuable databases

In Canada and other high-income countries, thousands of HIV-positive people participate in observational databases. These databases collect health-related information for many years and store them in a confidential manner. Analyses can then be done by researchers seeking to identify trends or changes in the health of many HIV-positive people. Observational databases have been used to examine what happens to people over the long term, examining outcomes such as overall health, the occurrence of specific illnesses or conditions, and survival. Observational HIV databases, because of the length of time they can monitor participants, have proven to be a valuable source of information that randomized clinical trials, because of their relatively short duration, cannot generally provide.


Researchers in Canada and the U.S. have collaborated to form a giant database called the NA-ACCORD.

When participants initially entered the NA-ACCORD, they saw their doctor at least twice a year. However, in its latest publication, the NA-ACCORD team focused on HIV-positive participants who, after entry to the database, did not appear to be fully engaged with their HIV care. Specifically, the researchers sought data on participants who had infrequent laboratory tests-that is, waiting more than one year to see a physician to request such testing. For this analysis, the researchers examined data collected between January 2000 and December 2008 from 61,438 participants. The data were collected from the following places:


  • Alberta
  • British Columbia
  • Québec


  • Alabama
  • California
  • Colorado
  • Florida
  • Georgia
  • Illinois
  • Maryland
  • Michigan
  • Missouri
  • New York
  • North Carolina
  • Ohio
  • Oregon
  • Pennsylvania
  • Tennessee
  • Texas
  • Washington
  • Washington, DC


According to the researchers, about 25% of participants had what was called "incomplete retention" or "out of care" episodes (not visiting their doctor to incite referral to a laboratory for blood testing at least once within a 12-month period) at their local clinics. This figure is substantial, representing roughly 15,000 HIV-positive people.

Participants with one or more of the following factors or characteristics were more likely to be out of care:

  • injected street drugs
  • had not taken ART
  • had been under medical care for longer
  • were Black

Results-Trends in time

Over time, the overall proportion of participants who were not engaged in regular (at least once yearly) visits to their doctor fell from nearly 40% in 2000 to 18% in 2008.

Among Canadian participants, the figures were as follows:

  • year 2000 - 24% were not in regular care
  • year 2008 - 19% were not in regular care

The reason for the increase in lab tests (and visits to doctors) over time was not clear from the present study.

Understanding the results

The findings from the NA-ACCORD should be seen as an overview of what is happening to a clinic's population. The results cannot give a precise account of what is happening at the level of an individual. It is possible that some patients stopped visiting their doctors because they moved further away from the clinic or changed doctors. However, these reasons cannot account for the vast majority of participants who have not seen a doctor for at least a year and did not obtain laboratory monitoring in that time.

Populations and individuals

The NA-ACCORD's findings suggest that some people who injected street drugs were more likely than others to have intermittent care. This may indicate that barriers to care exist for this population. People with low incomes also likely face barriers to care.

Examples of barriers faced by drug users and people with low incomes may include the following:

  • difficulty interacting with a complex medical-health system
  • costs associated with clinic visits (such as transportation)
  • fees associated with the cost of insurance for drugs
  • fees associated with the dispensing of prescription medicines

Most people who inject street drugs need comprehensive assistance to (initially) stabilize their addiction and, later, to overcome it. Support for their overall mental health is also likely needed. Such interventions at the individual level require commitment and building trusting relationships and they take time. At the level of a clinic, interventions with drug users often are most successful when the help of a multidisciplinary team is involved.

The NA-ACCORD's findings can be used by individual clinics to search their own databases for patients, particularly people who inject drugs, who do not see their doctor at least once a year and therefore do not get sufficient care. Such clinics can then embark on efforts to recall such individuals to the clinic for care and treatment and to investigate the reasons for insufficient contact with the medical-health system.

Clinics need more resources

If each clinic had only a handful of people who received irregular care, recalling such patients and interviewing them about their issues would not be a major problem. However, if the number of patients not in regular care becomes large, clinics will need additional funds to not only re-engage patients but also to provide the services that are needed by people trying to recover from substance use.

Furthermore, in different parts of Canada and the U.S., clinic populations are different, so there may be a need for the creation of new services, intensification of existing services, and outreach. For instance, Canadian research has found that in the Prairie and Pacific regions, Aboriginal people who are HIV positive may also inject street drugs. Care and engagement of Aboriginal people and getting them to trust the medical-health system will require cooperation with local Aboriginal organizations as well as groups and agencies that provide services for drug users.

Not just about care

If healthcare authorities put more funding toward engaging a significant portion of HIV-positive people in regular care and treatment and addressing issues such as substance use, patients can be helped onto the path of not only improving their immune systems but also their psychological sense of well-being. Keeping people on treatment and in care also has other benefits, such as the following:

  • It helps to prevent patients from developing life-threatening infections. Such infections are extremely costly for the emergency and infectious disease departments of hospitals to treat.
  • It helps Canada and other high-income countries move toward the goal of reducing the onward spread of HIV. At the level of a large population, such as in a region, there are likely to be fewer HIV transmissions from people taking ART. Moreover, people who are in care and on treatment can be counselled about taking steps to further lower transmission risks to their partners. This also helps to reduce future costs to the system.

Looking ahead, funding agencies and regional authorities should be aware that research will need to be targeted at specific regions in Canada and in the U.S. in order to understand the needs of different clinic populations and how to retain them in care.

-Sean R. Hosein


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