HIV Care Continuum: Updates, Goals, and Recommendations for the Future

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  Diagnosis

  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.

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  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.

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  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.

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  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

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  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.

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  Viral Suppression

  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

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  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.

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  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 ART^1,3; 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.

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  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

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  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