Falling Behind: More Focus Needed on Retaining People in HIV Care

Content From: Richard Wolitski, Ph.D., Director, Office of HIV/AIDS and Infectious Disease Policy, U.S. Department of Health and Human Services, and Selena Gonzales, MPH, ORISE Fellow, Office of HIV/AIDS and Infectious Disease Policy, U.S. Department of Health and Human ServicesPublished: October 20, 20176 min read


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If you had an illness that required medical treatment for the rest of your life, how easy would it be for you to take your medication 365 days a year, refill your prescriptions, and never miss a medical appointment? Have you ever just completely forgotten to do something? Have you ever skipped an appointment because you did not want to deal with it? Have you ever felt uncomfortable talking openly with your doctor for fear of judgment? 

Doing anything perfectly for the rest of your life is pretty much impossible. People diagnosed with HIV need ongoing HIV care and treatment for the rest of their lives or until we have a cure. That is a lot to expect of anyone. For people living with HIV, however, being as perfect as possible with care and treatment is essential for their health and for preventing transmission. Being retained in HIV medical care is the only way people living with HIV can achieve and maintain an undetectable viral load. Without the recommended treatment and care every person living with HIV who has an undetectable viral load could, in a matter of weeks, go to having a high viral load that would go on to destroy their immune system and increase the risk that they could transmit HIV to others. 

NHAS Retention In Care Target Missed, Again
The National HIV/AIDS Strategy (NHAS) sets our target for increasing the percentage of HIV-diagnosed persons who are retained in HIV medical care to at least 90% by 2020. According to the most recent data available in the Monitoring Report [PDF 2.32 MB] from the Centers for Disease Control and Prevention (CDC), in 2014 56.9% of people diagnosed with HIV in the U.S. were retained in HIV medical care. While the proportion of those retained in care has increased since 2010, we have missed our annual target every year since the NHAS was released. In 2014, we missed the target of 63.5% by almost 7%. Missing the annual target once again in 2014 is a clear warning sign that we are at risk of missing the 2020 target. That target of 90% of HIV-diagnosed persons being retained in care can now only be met with a rapid acceleration of progress. Recent changes to the CDC funding agreement with state health departments will likely be essential to this, but health care systems and providers will need to work to improve patients’ experiences in care as well.

For this indicator, retention in HIV medical care is defined as receiving two or more CD4 or viral load tests performed at least three months apart in a year. The CDC used laboratory data from jurisdictions with complete reporting of CD4 and viral load tests to assess retention. The 2014 retention data are from 38 jurisdictions, an increase from 19 in 2010. Data from these 38 jurisdictions represent 71.9% of all persons aged ≥13 years living with diagnosed HIV at year-end 2014. To assess changes in retention in care and account for the changes in the number of jurisdictions contributing data, the CDC also assesses trends in retention in care included at baseline that contributed to data for each year of assessment. The number of jurisdictions reporting these data is expected to increase in the coming years, providing an even better representation of the nation as a whole. 

Disparities in Retention
Reviewing the data further, there are concerning disparities in retention in HIV care. While the 2014 target was not achieved for any of the racial/ethnic, risk, gender, and age groups monitored, it is also important to look at all the groups with retention rates that are lower than the national average (56.9%). Native Hawaiians and Pacific Islanders have the lowest rates of retention to HIV care (50.2%). Other groups below the national average include: Blacks (54%); American Indians and Alaska Natives (54.8%); people ages 25-34 (53.3%), ages 35-44 (54.9%), and 13-24 (55.5%); men who inject drugs (50.8%); and men who contract HIV through heterosexual contact (53.8%).

Action to Improve Retention
Nationally, we’ve seen only modest progress in retaining people in HIV care. The amount of improvement hasn’t been enough. Broader implementation of Data to Care activities will certainly help improve retention over time. The models and strategies for using surveillance data to find people who have fallen out of care have improved over time, but these strategies should be viewed only as safety nets or salvage strategies that are essentially a last attempt to reengage people who had dropped out of care some time ago. 

Strategies that improve people’s experiences in health care, that make them want to stay in care and make it easy for them to do so are essential and are likely to be cheaper and more effective in the long run than strategies for reengaging people after they have already been lost to care. Health care systems and providers should do what they can to make it easy to access services, to provide them in a welcoming culturally appropriate setting that is supportive and affirming, and to ensure high quality care that is free of unwarranted bias or judgment and engages patients as partners. Patient navigators can play a useful role in this as well. Health care settings should establish procedures so that if a patient misses an appointment and drops out of care for a brief period of time they can be engaged as soon as possible instead of having to be located by health department staff six months to a year later when surveillance data become available and Data to Care activities are initiated. 

Increasing retention in HIV medical care will require that providers and clinics view retention as an important goal in HIV care as well as coordination between public health and clinical professionals. Medical providers can create a welcoming environment, build rapport and trust with patients, and emphasize the importance and benefits of treatment. It is essential that the physician does this, but it must involve the entire care team as well as receptionists and other clinic staff who interact with patients. Health departments can assist medical providers by providing outreach services to persons with HIV who are not in HIV medical care and locating people who have dropped out of care using surveillance data. As we devote more attention to improving retention in care, we must also continue to build the capacity and cultural competency of the HIV workforce. We must build the relationships and establish the protocols to retain all people living with HIV in medical care so that they can achieve and maintain suppressed viral loads that will stop progression of HIV disease and prevent sexual transmission to others.

In the next post in our continuing NHAS Indicators series, we will look at the indicator for viral suppression. Stay tuned...