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Megan Boyk examines the web of healthcare provision for indigent HIV/AIDs patients and the remaining shortfall for high quality healthcare.
In summer 2014, I completed a Shepherd internship at the Regional Center for Infectious Disease (RCID) in Greensboro, North Carolina. The RCID is part of a regional private hospital network, Cone Health, which is committed to treating patients regardless of their ability to pay. About 80% of the patients at the RCID are HIV positive, and the majority of those patients are disadvantaged members of society. Effective treatments with minimal side effects are available: with a single pill each day, most HIV patients can live an essentially normal life. However, the populations most affected by HIV – the poor, LGBTQ individuals, people of color, injection drug users, and sex workers – tend to have significant barriers to care and compliance. I spent most of the day shadowing the physicians at the practice. Between patients, I helped the doctors and staff with day-to-day office tasks. This gave me the opportunity to get to know many of the patients and hear firsthand about their lives, diseases, and healthcare. I noticed that many HIV patients faced major barriers to care, some of which are the result of political, cultural, and societal factors, and some of which are individual factors like mental illness or health literacy. These observations were supported by what I learned in my public health coursework at John Carroll University, conversations with RCID physicians and staff, and reading assigned to me by my internship supervisor.
At the societal level, discrimination against people with HIV and healthcare policy limit access to quality care. Misconceptions about the disease (e.g. that HIV is a death sentence and transmitted by casual contact with infected individuals) contribute to significant sigma against HIV positive individuals. Further, people with HIV are often members of other marginalized groups, which creates still more challenges in accessing care. For instance, undocumented immigrants are frequently hesitant to trust medical professionals because they are afraid of being reported to immigration services and deported. Research demonstrates that minority groups like people of color or people who identify as LGBTQ often have a higher incidence of health issues, like mental illness and stress-related diseases. Other studies show that these groups may be less likely to seek care when a health issue arises because of real or perceived discrimination. Clearly, the discrimination against people with HIV and the populations most affected by the disease leads to compromises in health and healthcare.
Access to care is also affected by American politics. The Affordable Care Act (ACA) has improved access for some individuals, but the benefits vary widely by state. The ACA includes an option for states to expand Medicaid from covering a relatively small group of people – typically, people who are extremely poor in addition to being a child, pregnant, or disabled – to including all individuals below 138% of the federal poverty level (FPL). Additionally, for those between 100% and 400% FPL, the government subsidizes private insurance. However, a gap in care exists for many below 100% FPL in states that chose not to expand Medicaid, such as North Carolina: they are too poor to afford private insurance on their own, ineligible for subsidies to assist with the cost of private insurance, and do not qualify for Medicaid. There are some government resources to assist people with HIV, such as the federal Ryan White program and the state AIDS Drug Assistance Program, but the assistance is typically restricted to care and medication that is related to HIV/AIDS. Primary care is not covered in some cases, nor is specialist care from doctors other than infectious disease physicians. Overall, the complex patchwork that makes up the American healthcare system frequently limits coverage and access to care for those who need it most, including HIV patients.
Barriers to care also exist at an individual level, and these are often caused or compounded by poverty. Mental illness and substance abuse can pose major challenges in seeking and accessing care. This observation is supported by scientific literature: discrimination against HIV positive individuals, lower quality of life, and worry about health result in higher risk for mental health problems such as depression, anxiety, and other psychiatric disorders. Mental health issues such as depression have been shown to reduce compliance with HIV medications, while treatment of mental illness improves compliance.
LGBTQ individuals also face barriers to care because they are more likely to suffer from mental illness and less likely to seek care. Further, family and friends may no longer support their LGBTQ friends and relatives once they learn of their sexual orientation or gender identity. There is a lack of societal support as well: some LGBTQ people feel uncomfortable coming out to someone they don’t know or trust, including healthcare professionals. All these issues makes LGBTQ individuals less likely to access care and more likely to have mental health issues that reduce compliance.
Low health literacy is another well-documented barrier to care for HIV patients. Countless studies have shown that low health literacy contributes to low compliance, especially among patients with chronic diseases. HIV is a chronic disease that sometimes requires complicated drug regimens, and in today’s healthcare system physicians may not have the time to sufficiently educate their patients to ensure compliance. It is vital that physicians take these factors into account when treating patients with HIV that may be complicated by other issues.
Status as a racial or ethnic minority, immigrant, or other disadvantaged group may also contribute to individual barriers to care. Racial minorities and immigrants – especially those without documentation – face numerous challenges in their daily lives. Many studies document that racial discrimination against African Americans is associated with increased risk of stress and related syndromes like heart disease and mental illness. In many countries, including the United States, continued violence and discrimination against women means that many women do not have the self-efficacy or social status to negotiate condom use with their partners, increasing the risk of HIV transmission. Marginalized groups also tend to have less access to health care overall, meaning that they may have other conditions (e.g. other STDs that cause open genital sores) that may put them at higher risk for HIV. Finally, it’s also important to note that many HIV patients face several of these barriers. Patients I met included gay black men, homeless injection drug users, and undocumented women. Altogether, these barriers can become significant challenges for physicians and patients.
Overall, the RCID seems to do a great job of providing care for the whole person, accommodating a variety of needs. For uninsured patients with more complex medical issues, primary care is available either through the infectious disease physicians or free referrals to primary care physicians in the same hospital system. For common barriers to care faced by HIV patients – substance abuse; mental health issues; and housing, food, or financial insecurity – patients can see trained counselors in-house for free. However, RCID is unable to refer uninsured patients without Medicare or Medicaid for specialist care because it is not covered by government HIV/AIDS programs. The many collaborating agencies with offices in the RCID sometimes face challenges in coordinating care, but nevertheless it convenient to have all these services in the same building. Patients are already comfortable with the staff there and all the counselors have experience working with HIV+ people, and offices can communicate more efficiently than if they were in separate buildings. The principal change that would help the RCID improve its services is state and federal healthcare policy reform to make the system more user-friendly and more comprehensive in terms of coverage. It’s also worth noting that many cities may not have services like the RCID to help HIV patients, and those in rural areas almost certainly do not have access to these types of services.
This internship experience was especially meaningful at this point in my life, as I am currently applying to medical school. I’ve always had an interest in serving the poor and marginalized through medicine. This internship, along with my coursework and service learning at John Carroll, have brought depth and maturity to that desire. As I consider where I will attend medical school, I must also consider what kind of physician I want to be. I’ve learned a lot about what it means to be a physician working with underserved populations. However, I’ve also found that I have a lot more to learn. Being a physician for someone in poverty often means much more than simply assessing signs and symptoms, ordering tests, and prescribing medications. It means identifying root causes of conditions, acknowledging barriers to adequate care, and providing resources to address external challenges and determinants of health. To advocate and provide quality care for these populations, I believe that we must educate ourselves about poverty and social justice, especially as they relate to health and health care. I hope to continue to have opportunities to do so as I pursue my career in medicine.
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