The Impact of Medicaid Expansion on HIV-Positive Men and Women in the Southern United States

HIV in the Southern United States

The Human Immunodeficiency Virus (HIV) is a relatively new virus to the Western world, first described in a 1981 Morbidity and Mortality Weekly Report published by the Centers for Disease Control and Prevention (CDC). The brief journal article highlighted a series of rare, opportunistic infections, reflective of severely immunocompromised individuals, in young, gay men from Los Angeles. These observations of rare fatal illnesses in otherwise healthy individuals led to scientific research characterizing HIV as a virus that damages and kills immune cells, namely CD4 cells critical to maintenance of a strong immune system. Scientists quickly determined that when enough of these cells have been killed by the virus, HIV advances to its final stage, Acquired Immunodeficiency Syndrome (AIDS), characterized by a CD4 count of less than 200. At this level, the compromised immune system makes patients vulnerable to other illnesses, ultimately leading to mortality from common pathogens (What is HIV/AIDS?).

Further research revealed both the mechanism of transmission and subsequent progression of the virus in the body. Despite the stigma surrounding the disease, HIV eventually came to be recognized as an infectious disease transmitted through human-to-human contact of bodily fluids, including blood, semen, rectal and vaginal fluids, and breast milk. With an estimated 50,000 new infections annually since its first emergence and nearly 14,000 deaths from AIDS in 2011, the viral incidence has been steadily increasing in the United States (What). One of the contributing factors to HIV’s quick spread is its lack of specific, identifiable symptoms. Two to four weeks after infection, infected individuals may suffer from acute retroviral syndrome (ARS), characterized as a severe, flu-like illness with fever, vomiting, and diarrhea.

Following ARS, however, HIV-positive individuals enter a period of clinical latency, where the virus is living and developing in the body without generating symptoms in the individual. During this time period, the HIV-positive individual can transmit the virus, often unknowingly, to others. Since beginning treatment during latency can dramatically reduce transmission rates while also permitting decades of future life for the infected individual, there has been an increased focus on early detection (What). Without early treatment, the disease quickly progresses to AIDS, which is characterized by rapid weight loss, tiredness, swelling of lymph nodes, and opportunistic infections that yield death. In the early years, HIV had to advance to AIDS for clinicians to realize that their patients were suffering from this new infectious disease (What).

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When HIV first emerged in the 1980s, the demographics of the most vulnerable population were quite different from the demographics of today’s infected population. The virus initially appeared in white men who have sex with men (MSM), a population that was generally upper-middle-class and urban-dwelling (What). However, after many years of transmission within the United States, the virus began impacting a new demographic. The rates of infection in non-white populations began increasing as the rates in white populations decreased. The proportion of women infected, which was initially only a small percentage, also began growing.

Heterosexual contact and infected needles began increasing as means of transmission, while homosexual contact began to decrease as the dominant method of transmission (Reif et al., 2014). While the virus continued its spread in highly-concentrated urban areas, it also began spreading to rural regions lacking geographical access to health care facilities. The socioeconomic composition of diagnosed individuals began shifting toward low and moderate income individuals, ultimately leading to the current scenario in which 61% of adults with HIV live at or below 133% of the FPL (Kates et al., 2014).

As a reflection of these demographic and socioeconomic changes, the southern United States has emerged as the new epicenter of HIV, a designation that stands in striking contrast to the origins of the virus in the urban havens of Los Angeles and New York City. The 2011 rate of new HIV infections per 100,000 residents was highest in the South, which possessed eight out of ten U.S. states with the highest rate of new infections (Reif et al., 2014). Although the South only composes 37% of the U.S. population, 50% of new HIV infections occurred in this region in 2011.

The American South is not only the location of most new infections, but it is also the region featuring the greatest proportion of deaths from AIDS. Nine out of ten states with the highest fatality rates from HIV/AIDS are located in the South, and epidemiologists have observed the impact of the demographic changes on the most vulnerable. In regards to race and ethnicity, 50% of the men and 71% of the women who were newly diagnosed with HIV in 2008 were African American (Reif et al., 2014). In regards to gender, 25% of new HIV infections were women, of which 86% were infected via heterosexual contact. MSM account for a smaller majority of infections at 61%, and intravenous drug use accounts for 9% of transmission, with combinations of the three modes composing the remaining transmission methods (Reif et al., 2014).

Although no cure currently exists for HIV, antiretroviral therapy (ART) is the standard of care for HIV-positive individuals, and it is recommended for immediate and continued use after an HIV diagnosis. It dramatically slows the disease’s progression to AIDS while also depressing an individual’s viral load, thereby improving CD4 cell counts while lowering the risk of transmission to others (Kahn et al., 2001). Recent studies have shown that the average gain in life expectancy from the start of a daily, oral ART regimen is an additional 23.26 years. After accounting for the individual’s expected quality of life, this additional longevity corresponds to an additional 12.94 quality-adjusted life years, which reflect full physical and mental health (Mascolini, 2013).

Despite the promising increases in longevity and life quality for HIV patients on ART, only an estimated 380,000 patients out of a total of 940,000 individuals who have been diagnosed with HIV are receiving an ART regimen (Kates et al., 2014). According to the HIV Care Continuum recommended by the CDC, 1.2 million Americans are likely to have been infected with HIV. Of those, 86% have been diagnosed with HIV, but only 40% have been linked to and retained in care. Of the original 1.2 million, 37% are currently receiving ART, and 30% of all HIV-positive individuals in the United States have achieved suppressed viral loads to significantly reduce the rate of transmission (Affordable Care Act). Health care policymakers continue to work to eliminate the major discrepancies found between the stages of the Care Continuum.

However, even among those receiving ART to suppress viral loads, reduce transmission risk, and improve longevity, medication adherence remains a significant problem. Up to 70% of HIV-positive individuals receiving care have been reported to take medications incorrectly and inconsistently (Chesney, 2000). Although 60% of these HIV-positive individuals take more than 80% of their medications, a tremendous 40% of those engaging in treatment fail to take even four-fifths of their pills (Chesney, 2000). These statistics are of grave concern to the medical community because the medications are not as effective in increasing longevity and improving quality of life when taken incorrectly. Inconsistent usage leads to fluctuating viral loads, which increase rates of transmission relative to those using medications accurately. Incomplete medication regimens also pose the risk of viral mutations that could strengthen HIV’s resistance to common treatment regimens (Chesney, 2000).

Four major social factors have been attributed to non-adherence or the outright refusal of treatment in HIV-positive populations, which contribute to the gaps observed in the CDC’s Care Continuum. The first factor involves the circumstances of the patient. Those in a lower socioeconomic status often exhibit riskier health behaviors, experience greater life stress leading to riskier sexual behaviors, and suffer from increased rates of substance abuse and depression (Chesney, 2000). They also tend to have lower rates of education and less understanding of the medical implications of non-adherence or treatment refusal. Since the positive effect of ART goes unnoticed in the short-term, this lack of education exacerbates the problem because treatment does not provide any immediate health benefits to a patient in clinical latency other than reduced transmission to others. With no immediate benefits, many patients may not fully comprehend the repercussions of non-adherence on their future health (Chesney, 2000).

The other three characteristics attributed to poor medication adherence are the responsibilities of the scientific and medical communities. The second major factor, the medication regimen, plays a significant role in adherence as researchers continue to develop safer and easier medication schedules. The number of pills, their various food and drink requirements, and the medication time schedule can all discourage proper use if the requirements are exceedingly complex or demanding (Chesney, 2000). The third factor, the patient-provider relationship, plays a significant yet unquantifiable role in determining a patient’s enrollment in and adherence to the regimen.

Poor communication, stereotyping, and perceived judgment or condemnation of an individual’s lifestyle often yield a reduced willingness to enroll in treatment. Furthermore, the structure of the health care system, the fourth factor impacting treatment adherence, can also positively or negatively impact an individual’s likelihood of enrolling in ART. A patient’s negative experiences within the health care system, which can include a lack of confidentiality, perceived judgment or discrimination, and poor communication, discourage future use of the medical system and harm patient health. Meanwhile, health systems that have a reputation for confidentiality and empathy tend to observe better medication adherence (Chesney, 2000).

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While stigma and a lack of knowledge account for some discrepancy in observed treatment adherence, poor geographic access to health care facilities and the annual cost of the treatment are tremendous barriers for many HIV-positive patients. The rural South features tertiary care hospitals that frequently serve as the primary source of medical care for individuals who may reside hundreds of miles away. The treatment costs over $12,000 per year for the average patient, thus posing a significant financial barrier for a disease in which most patients fall under the Federal Poverty Line (Kates et al., 2014).

Therefore, the strong social net provided by Medicaid, the largest payer of HIV care in the United States, plays a critical role in funding HIV treatment. Medicaid is a means-tested, joint federal and state health insurance program designed to provide assistance to low-income citizens for health care expenditures (Medicaid). The program covers mandatory health care services, including inpatient and outpatient visits, physician services, and laboratory tests and x-rays (Medicaid). Medicaid also provides optional coverage for other health care services, including prescription drugs, dental care, and personal care services. In the fiscal year 2013, Medicaid expenditures totaled $441 billion, representing 8% of the total federal budget. Although Medicaid pays for 41% of HIV-positive patients in care and private insurance accounts for another 30%, the remaining HIV-positive individuals seeking treatment are uninsured (Medicaid).

In order to qualify for Medicaid, individuals must meet requirements for both a financial eligibility level as well as a categorical eligibility as a targeted group (Medicaid). These categories, which vary by state in the income ranges allotted to receive benefits, include children, parents with dependent children, pregnant women, and individuals with disabilities (Kates et al., 2014). In the southern United States, the 2013 maximum average income percentages of the federal poverty line (FPL) set for adults seeking Medicaid varied widely but generally fell under the 138% threshold set by the Affordable Care Act.

While children up to one year old qualified for Medicaid if the family made up to 198% of the FPL, children aged six to eighteen only qualified up to 160% of the FPL. Although pregnant women qualified up to 187% of the FPL, parents of dependent children could only make up to an average of 40% of the FPL to qualify for Medicaid. Therefore, anyone making over the predetermined income thresholds by category could not qualify for Medicaid.

In addition, prior to the Patient Protection and Affordable Care Act of 2010 (ACA), federal law excluded non-disabled working adults without children from receiving federal funds for Medicaid. This exclusion, still present in states electing not to expand Medicaid, creates a catch-22 for low-income, HIV-positive adults. Despite meeting the financial requirement, childless adults who do not meet an eligibility requirement cannot qualify for Medicaid unless they are sick and disabled. However, their early access to HIV treatment through Medicaid could stave off such disability, improve the quality and longevity of their lives, and reduce transmission of the virus to others (Kates et al., 2014).

Therefore, a critical feature of the Affordable Care Act was a Medicaid expansion that expanded health insurance access to individuals with incomes up to 138% of the FPL while also eliminating the requirement of an eligibility category. Under the new measure, any individual meeting income requirements can enroll in Medicaid. While initially intended as a national mandate, a 2012 Supreme Court ruling in National Federation of Independent Business v. Sebelius dictated that the Medicaid expansion was an optional program decided on a state-by-state basis. Therefore, states not expanding Medicaid still require HIV-positive patients to match a category (Kates et al., 2014).

Therefore, each state had to make a legislative decision to expand Medicaid to greater income thresholds while eliminating eligibility categories. While the text of the Affordable Care Act explicitly states that 133% of the FPL is the minimum threshold, a new method of calculating income provides a special income deduction of 5% of the FPL, which means that the threshold effectively stands at 138% of the FPL (Medicaid). The Medicaid expansion is to be fully funded by the federal government through 2016, with the contribution made by the federal government declining gradually to 90% through 2020. Under this new system, childless and non-disabled adults qualify for Medicaid, and more categorical, low-income individuals just above the income threshold may enroll in the expanded program.

As of December 2014, only 28 states and the District of Columbia had adopted a Medicaid expansion. In the southern United States, which for the purposes of this paper will be defined as the states of North Carolina, South Carolina, Georgia, Florida, Alabama, Tennessee, Kentucky, Mississippi, Louisiana, and Arkansas, only two of the states – Arkansas and Kentucky – have voted to expand Medicaid. Another seven states nationally, including the sole southern state of Tennessee, are currently debating proposed Medicaid expansions in their state legislatures (Medicaid). Therefore, the residents of the eight southern states electing not to expand Medicaid remain in an impasse referred to as the Medicaid gap.

Any HIV-positive individuals meeting a categorical requirement but making between their state’s mandated level of the FPL and 100% of the FPL do not qualify for Medicaid but also do not qualify for subsidies in the health care exchanges (Medicaid). These individuals must rely entirely upon unsubsidized private coverage, which is often too expensive for their income level, or funds from the AIDS Drug Assistance Program (ADAP), which only cover prescription drugs. Together with the childless, non-disabled HIV-positive adults not meeting the categorical requirement, these HIV-positive individuals are especially vulnerable to rapid progression of HIV to AIDS and increased rates of transmission (Medicaid).

Another possible avenue for financial assistance for HIV treatment is ADAP, which is administered under the federal Ryan White CARE Act (Kahn et al., 2001). Assisting 40% of all individuals diagnosed with HIV for a total of 231,000 clients in 2011, ADAP provides critical financial support to uninsured HIV-positive individuals seeking treatment. However, the program pays almost exclusively for prescription drugs rather than funding all health care expenditures related to treatment for HIV. This means that the costs of physician services, hospital stays, and laboratory tests must be covered out-of-pocket by low-income patients, limiting the effectiveness of the program (Kahn et al., 2001).

Furthermore, the program requires an annual appropriation from Congress to cover the federal government’s pledged contribution of two-thirds of the cost of the program, making continuity of the program vulnerable to political whims (Kahn et al., 2001). Funding gaps and political disagreements at the federal and state levels led to the creation of waiting lists that first appeared in 2002. By 2004, 1,629 HIV-positive patients were on waiting lists for ADAP support (Lefert et al., 2013). By 2011, this number climbed to 9,298 individuals, a magnitude large enough to seize the attention necessary to fully fund the program through 2014. While there are currently no waiting lists for ADAP, historical record demonstrates that ADAP is very susceptible to political controversy and financial instability, thus risking treatment continuity for beneficiaries (Lefert et al., 2013).

While the optional Medicaid expansion under the Affordable Care Act has the greatest opportunity to impact the diagnosis and treatment of HIV/AIDS, other changes provided under the health care law also assist HIV-positive individuals. The law prevents insurance companies from rejecting individuals for health insurance on the basis of pre-existing conditions, so HIV-positive patients will no longer face rejection from insurance following their diagnosis (Kates et al., 2014). Those who enjoy incomes greater than the limits set by a Medicaid expansion may be eligible to receive financial assistance through a health insurance exchange. Any HIV-positive individual seeking health insurance in an exchange will be eligible for a subsidy if income is at or below 400% of the FPL. Finally, all health insurance plans must now cover mandatory health services, which include preventative services such as free HIV testing. All of these facets of the Affordable Care Act, in addition to the Medicaid expansion, may ease access and affordability for HIV-positive patients.

Overall, it is clear that the demographics of the HIV-positive population have shifted to yield a vulnerable population of rural southerners who tend to fall in the lower economic strata. The Medicaid expansion of the Affordable Care Act has the potential to remove categorical restraints and ease financial restrictions to expand health care access to those in need. The chronic nature of HIV requires continuity of care to produce substantial improvements in life quality and longevity, as well as reduced transmission rates for the rest of society. These benefits can be quantified and compared to the costs of a Medicaid expansion to determine the effect and desirability of such a policy expansion in the South.Continued on Next Page »