The CDC estimates that at the end of 2014, 1.1 million people in the United States were living with HIV, 14% of whom had never received a diagnosis.4 An estimated 30% of HIV transmissions in the United States are attributable to PLWH who are unaware of their HIV status.5 Diagnosis is the first step in the HIV care continuum, and the US Preventive Services Task Force (SPSTF) recommends clinicians screen all patients age 15 to 65 years for HIV at least once.6 More frequent screening is advised for sexually active gay and bisexual males and for anyone with an elevated risk of HIV.6
Failure to screen delays ART for PLWH, which leads to worse outcomes.1 Only 16 states (primarily in the South) do not offer free routine HIV testing, and many of those states have higher than average HIV infection rates.1 Rapid HIV tests are available that provide results in 30 minutes.1 The US Food and Drug Administration (FDA) has also approved home tests kits that use a sample of blood or saliva.
Photo Credit: The Henry J. Kaiser Family Foundation.
Linkage to Care
After diagnosis in the HIV care continuum is LTC. The CDC and Institute of Medicine (IOM) define LTC as “a period of 3 months or less between documentation of diagnosis and initiation of medical treatment with an HIV care provider/prescriber.”1 The 3-month benchmark was established because data show PLWH who start ART in the first 3 months after diagnosis achieve viral suppression faster than PLWH who delay treatment.1 Despite the critical importance of early ART, only 59% to 80% of PLWH in the United States start HIV care within 3 months of diagnosis.1
Although other high-income countries report higher LTC rates than the United States, their data show that having access to care does not guarantee patients will receive care. Various strategies have been proposed to promote LTC specifically in populations less likely to be linked to care, including drug users and low-income PLWH. Facilitating LTC may require an interdisciplinary team spread among multiple facilities.
Retention in Care
The IOM, CDC, and the Obama administration’s National HIV/AIDS Strategy (NHAS) define RIC as “2 or more visits for routine HIV medical care in the preceding 12 months at least 3 months apart.”1 The consensus definition fails to account for scheduled appointments the patient missed or canceled, which studies have associated with worse outcomes in PLWH.1 For example, a greater number of missed appointments corresponds with a higher viral load and a lower CD4 count.1
An estimated 40% of PLWH in the United States are engaged in care —the lowest RIC rate reported for a high-income country.1 The 40% RIC estimate may be artificially low because it often fails to capture patients who switched providers, were imprisoned, or died.1 A CDC study found that people who received an HIV diagnosis but were not retained in care were responsible for 61% of HIV transmissions in the United States.5 This finding highlights the importance of increasing the proportion of PLWH retained in care to society.
Adherence to Antiretroviral Therapy
Viral suppression depends on consistent ART adherence.1 Only 24% to 37% of PLWH in the United States are prescribed ART, which is markedly lower than rates in other high-income countries.1 Adherence rates are more difficult to determine because objective tools for measuring ART adherence are lacking. Most adherence rates are based on patient self-report, per the recommendation of the International Association of Physicians in AIDS Care (IAPAC).1 A survey of US adults with HIV receiving medical care found 60% had taken ART exactly as prescribed over the past 3 days.7
Suboptimal adherence increases patients’ risk of opportunistic infections, comorbidities, the emergence of drug-resistant HIV, and mortality.1 Young people, women, and people who have had a diagnosis for at least 10 years are less likely to be adherent. Other risk factors for poor adherence include psychosocial comorbidities, adverse effects, having a more complex regimen, and patient beliefs about the value of therapy.7
Photo Credit: Henning Dalhoff/Science Source
Interventions to Improve Adherence
The first step toward improving adherence is making sure ART is prescribed. Some countries’ policies tell physicians to wait for the patient’s CD4 count to drop below a certain threshold before prescribing ART, but the IAPAC encourages physicians to start ART right after diagnosis, regardless of the patient’s CD4 count.1
Studies have evaluated various interventions to improve ART adherence overall and in targeted populations.8 Cognitive behavioral therapy, educational interventions, directly observed therapy, social support, and reminder systems (eg, phone apps or automated calls) improved ART adherence in some studies, but not all. Adherence strategies will likely need to be tailored to specific settings.
Addressing barriers to adherence may benefit some patients. Clinicians should refer patients with mental health or substance abuse issues for appropriate treatment.7 Other considerations include simplifying ART regimens and remedying treatment-related adverse effects.
All the prior steps in the HIV care continuum are meant to culminate in viral suppression, which the CDC defines as a viral load <200 copies/mL.1 Viral suppression reduces the risk of HIV transmission by 96%. Considering less than 37% of PLWH in the United States (diagnosed and undiagnosed) receive ART, it is not surprising that 70% of PLWH have not achieved viral suppression.2
The NHAS calls for an 80% rate of viral suppression in all people in the United States with HIV by 2020. Although the NHAS goal appears ambitious, one study found that 90% of US patients who received an HIV diagnosis and were retained at each successive step of the continuum achieved viral suppression.1 Healthcare providers play a critical role in ensuring that a seropositive patient makes it through each step. Although viral suppression is the last step in the continuum, providers should not ignore quality-of-life issues that persist after viral suppression, which may cause some PLWH to regress on the continuum.1
Effect of Recent Changes in US Healthcare Policy
The Affordable Care Act (ACA) made health insurance accessible to many PLWH in the United States.1 Preventing insurance discrimination due to a pre-existing condition, eliminating lifetime benefit caps, and limiting out-of-pocket costs and deductibles are all positive policies for people living with a long-term chronic condition like HIV. Because of the provision extending Medicaid enrollment to low-income, childless, non-disabled adults, more than 40% of PLWH now receive care through Medicaid.1
Despite the expanded access to health insurance, approximately one-quarter of PLWH lack coverage. Others have health insurance but struggle to afford care because of high deductibles and out-of-pocket expenses. Many low-income PLWH, especially in states that declined to expand Medicaid, rely on the Health Resources and Services Administration Ryan White HIV/AIDS Program (RWHAP). The funding for RWHAP is set each year in the federal budget.
Future Directions for Policy Makers
Policy makers at the local, state, and federal level, along with other stakeholders, should begin by scrutinizing each step of the HIV care continuum. The following changes to US healthcare policy could improve outcomes for PLWH: make free HIV testing available in every state1; target individuals identified as high risk for HIV transmission for screening5; ensure that every PLWH has access to affordable health insurance and ART1,3; develop local programs to engage PLWH in their care to reduce transitions in and out of care1; improve the infrastructure for collecting and sharing data between providers1; address socioeconomic disparities in care for PLWH9; work to standardize HIV reporting requirements between states.1
Any changes to US healthcare policy that limit access to HIV screening, health insurance, or ART for PLWH will undermine progress on diagnosis rates and efforts to meet NHAS and UNAIDS goals of 80% to 90% viral suppression, respectively, by 2020.
The HIV Continuum on a Global Scale
As UNAIDS makes clear, ending the AIDS epidemic requires global cooperation to prevent HIV transmission.3 Analyzing data on each country’s progress at every phase of the HIV continuum can facilitate international efforts to determine the most effective distribution of finite resources.3 For example, one country may need to improve HIV screening rates, while another may struggle to provide ART.
At least 82 countries have already published data related to their national HIV care continuum.4 Among high-income countries, the United States ranks near the bottom at every phase except diagnosis.1 A lack of standardization limits the reliability of cross-country comparisons, however, and hinders effective policy analysis.1,4 To optimize data sharing, the CDC, IOM, UNAIDS, and other groups are working together to develop international standards for measuring, monitoring, and reporting progress at each step in the continuum.1
Success of the HIV Care Continuum
Although the framework for the HIV care continuum is linear, patients do not always follow the most straightforward path from diagnosis to viral suppression. Some patients revolve in and out of care or skip important steps of the continuum. Even patients who have access to care often delay starting ART or stop taking it. However, approximately 90% of PLWH who successfully transition through the individual steps of the HIV care continuum achieve viral suppression.1 And for every 1% increase in the rate of viral suppression, the incidence of HIV declines 1%.3 Thus, investing resources to keep PLWH steadily progressing through the continuum should eventually reduce the personal and financial toll of HIV/AIDS.3
Healthcare experts are increasingly adopting a continuum-of-care approach to manage chronic diseases like human immunodeficiency virus (HIV). The HIV care continuum (also known as the HIV care cascade) divides the journey from HIV diagnosis to viral suppression into 5 sequential steps.1 The goal is to have as many people living with HIV (PLWH) as possible get tested for the disease, start antiretroviral therapy (ART), and continue with ART to achieve and maintain an undetectable viral load.
The Joint United Nations Programme on HIV/AIDS (UNAIDS) wants every country to have 90% of its HIV population engaged in each phase of the continuum by 2020.1 The United States has nearly met the UNAIDS target for diagnosis, with approximately 86% of PLWH in the United States aware of their HIV status.2,3 However, it has made little progress toward the 90% targets for percentage of PLWH who start ART or who achieve viral suppression. According to the Centers for Disease Control and Prevention (CDC), only 37% of PLWH in the United States start ART and only 30% achieve viral suppression.2
Of the 70% of PLWH whose viral load is not suppressed, 66% are not receiving HIV care despite having an HIV diagnosis.2 The data indicate the need for greater emphasis on linkage to care (LTC) and retention in care (RIC), which are intermediate steps in the continuum.1 Despite the critical importance of both phases for achieving viral suppression, UNAIDS has not set 2020 targets for LTC or RIC, and only a handful of countries measure their progress.
A review of the HIV care continuum by Kay and colleagues published in AIDS Research Therapy in 2016 underscores the importance of instituting effective interventions at every phase.1 Healthcare policies that expand access to care for PLWH and promote treatment adherence will help countries come closer to achieving the UNAIDS 90% target for viral suppression, improve outcomes for PLWH, and reduce new HIV infections.
Compiled by Christina Loguidice
- Kay ES, Batey DS, Mugavero MJ. The HIV treatment cascade and care continuum: updates, goals, and recommendations for the future. AIDS Res Ther. 2016;13:35. doi:10.1186/s12981-016-0120-0
- Bradley H, Hall HI, Wolitski RJ, et al. Vital signs: HIV diagnosis, care, and treatment among persons living with HIV – United States, 2011. MMWR Morb Mortal Wkly Rep. 2014;63:1113-1117.
- Joint United Nations Programme on HIV/AIDS (UNAIDS). 90-90-90: an ambitious treatment target to help end the AIDS epidemic. http://www.unaids.org/sites/default/files/media_asset/90-90-90_en.pdf. Published 2014. Accessed July 6, 2017.
- Centers for Disease Control and Prevention (CDC). HIV in the United States: at a glance. www.cdc.gov/hiv/statistics/overview/ataglance.html. Updated June 9, 2017. Accessed July 8, 2017.
- Skarbinski J, Rosenberg E, Paz-Bailey G, et al. Human immunodeficiency virus transmission at each step of the care continuum in the United States. JAMA Intern Med. 175;588-596. doi:10.1001/jamainternmed.2014.8180
- Centers for Disease Control and Prevention (CDC). HIV testing in clinical settings. https://www.cdc.gov/hiv/testing/clinical/index.html. Updated June 20, 2017. Accessed July 5, 2017.
- Beer L, Skarbinski J. Adherence to antiretroviral therapy among HIV-infected adults in the United States. AIDS Educ Prev. 2014;26:521-537. doi:10.1521/aeap.2014.26.6.521
- Chaiyachati KH, Ogbuoji O, Price M, et al. Interventions to improve adherence to antiretroviral therapy: a rapid systematic review. AIDS. 2014;28(Suppl 2):S187-S204. doi:10.1097/QAD.0000000000000252
- Granich R, Gupta S, Hall I, Aberle-Grasse J, Hader S, Mermin J. Status and methodology of publicly available national HIV care continua and 90-90-90 targets: a systematic review. PLoS Med. 2017;14:e1002253. doi:10.1371/journal.pmed.1002253