HIV-positive adults in King County, Washington -- where access to HIV care is virtually universal -- nevertheless often cited insurance or financial barriers as reasons for being out of care.1 Other factors that may play a role in lack of HIV care or antiretroviral therapy among these people are depression (detected in more than two thirds) and substance abuse (in more than half).
To ensure health and lower chances of passing HIV to sex partners, people who test positive for HIV should (1) begin care with an HIV provider, (2) begin antiretroviral therapy, (3) take antiretrovirals steadily, as their clinician directs, and (4) stay in care. But some people with HIV have trouble achieving one or more of these four goals. For example, they may start seeing an HIV provider and start antiretroviral therapy, then drop out of care.
Understanding reasons why HIV-positive people do not meet these four goals can help health workers know which patients run a high risk of dropping out of care or stopping antiretroviral therapy. But little research with large patient groups counts reasons why people with HIV stop seeing their HIV clinician, never start antiretroviral therapy, or stop therapy. People with HIV can learn from studies like these through better understanding of individual factors that may affect their HIV care and treatment.
King County, Washington, which includes the city of Seattle, has the biggest population of any county in Washington state and the 13th biggest county population in the United States. Because of state and U.S. funding, almost everyone living in King County can afford HIV care. Yet some HIV-positive people in the county do not remain consistently in care or take antiretroviral therapy.
In 2011 King County began a program to find people who dropped out of HIV care and to help them return to care. As part of this program, researchers ask people what they see as barriers to entering and remaining in care, and barriers to starting and continuing antiretroviral therapy. The results described here represent the first thorough analysis of such findings for King County, or for any large area in the United States.
The study focused on HIV-positive people identified by King County's Care and Antiretroviral Promotion Program (CAPP), which promotes HIV care and antiretroviral use by people with HIV. During the time of this study, the program focused on everyone with a positive HIV test who dropped out of care because they fell into one of two groups: (1) those with no CD4 count or viral load result for 12 or more months, and (2) those with a viral load above 500 copies and a CD4 count at or below 500 when last reported in the preceding 12 months.
CAPP uses public records to identify people who have stopped HIV care in King County, have not moved to another area, and have not died. People can also be referred to CAPP through partner services for sexually transmitted diseases (STDs) and through STD clinics or HIV clinics.
CAPP specialists contact such people by phone and invite them to a 45-minute meeting. At that meeting the HIV-positive person and the CAPP worker identify barriers to HIV care and treatment and develop a firm plan to overcome those barriers. People identify barriers to care and to antiretroviral therapy by completing a form that lists several possible barriers. Each person also completes a computer-assisted self-interview that gathers information on age, education, income, sexual behavior, drug use, depression, and other factors. The CAPP specialist connects each person with a case manager, with health insurance assistance, and with other services aimed at getting the person back into care.
The researchers divided barriers to care into four nonoverlapping subgroups:
The investigators compared barriers to care and to antiretroviral therapy in different groups of patients. They used standard statistical methods to estimate the risk of each group of barriers by each patient group.
The study included 257 people, 195 identified by looking through records and 62 referred through partner services or STD and HIV clinics. Most participants, 89%, were men, 65% were white, 21% black, and 9% Hispanic. More than half, 60%, had been infected with HIV during sex between men, 31% while injecting drugs, and 7% during sex between men and women. Compared with all HIV-positive people in King County, study participants were younger (12% versus 7% younger than 30, 37% versus 14% younger than 40), more likely to inject drugs (31% versus 14%), and more likely to be infected with HIV within the past 2 years or more than 20 years ago.
Of the 257 eligible study participants, 247 completed the surveys needed for this study. Three quarters of these 247 people (77%) said they had an HIV clinician, but only about half (54%) had a case manager. (A case manager is a professional who helps with nonmedical aspects of care, like insurance.) While 73% of these people had started antiretroviral therapy in the past, 76% of that group had stopped therapy. Test results showed that about two thirds of the study group (69%) had depression, and about half (54%) reported current substance use (often with methamphetamine, cocaine, or heroin) or excess alcohol use.
A large majority of study participants (89%) reported at least one "important" barrier to HIV care. The most frequently reported barriers were no insurance (50%), forgetting appointments (34%), trouble getting appointments (32%), costs not covered by insurance too high (30%), and no transportation (28%) (Figure 1).
Figure 1. In a study of 247 HIV-positive people in King County, Washington, financial problems and difficulties scheduling and keeping appointments were the more frequent reasons for not being in care.
Among the 60 study participants who had never started antiretroviral therapy, 95% noted at least one "important" barrier to starting antiretroviral therapy. Treatment barriers reported most often were concerns about antiretroviral side effects (77%), the mistaken belief that HIV can be controlled by a healthy attitude (58%), concerns about the ability to take antiretrovirals regularly (55%), depression (47%), and provider saying therapy is not necessary (47%) (Figure 2). Other reasons listed by about 20% of people were illegal drug use, belief that other things in life are more important than antiretroviral treatment, belief that God's help is enough, and homelessness.
Figure 2. Among HIV-positive people who had not started antiretroviral therapy, the main reasons for not starting included fears of antiretroviral side effects, the mistaken belief that a "healthy attitude" alone can control HIV, concerns about one's ability to take antiretrovirals regularly (adherence), depression, and provider advice.
Of the 138 people who started antiretrovirals and stopped, 96% listed at least one "important" reason for stopping treatment. Reasons reported most often were depression (45%), wanting a break from treatment (41%), antiretroviral side effects (41%), difficulty taking antiretrovirals regularly (41%), and inability to pay for antiretrovirals (31%) (Figure 3). About one quarter of these people (26%) said using illegal drugs led them to stop antiretrovirals, while 20% said they believed they did not need antiretrovirals.
Figure 3. Similar proportions of people who started then stopped antiretroviral therapy blamed depression, wanting a break from treatment, antiretroviral side effects, and trouble taking antiretrovirals regularly (adherence). About one third said they could not afford antiretrovirals.
Three quarters of study participants (74%) listed issues related to healthcare organization and delivery (such as lack of insurance, costs not covered by insurance, and trouble keeping appointments) as the main barriers to HIV care. In comparison, about one quarter to third of people listed social factors (39%), health beliefs (36%), or non-HIV health conditions (25%) as important barriers to HIV care.
Social barriers to care (homelessness and lack of transportation) proved more frequent in blacks than whites (57% versus 35%), in people with versus without depression (47% versus 26%), in substance users (47% versus 30%), and in 30- to 39-year-olds than in people 50 or older (54% versus 28%). Most people found to have depression when tested in this study did list depression as an important reason for never starting antiretroviral therapy (62%) and for stopping therapy (57%). More than half of people with depression (56%) listed depression as a barrier to keeping HIV clinic appointments or taking antiretrovirals. Lower proportions of substance users identified substance use as an important barrier to HIV care (31%), starting antiretroviral therapy (27%), or continuing therapy (42%).
Half of study participants who used heroin (50%) and about one third who used cocaine (38%) or methamphetamine (33%) listed a poor relationship with their HIV provider as a barrier to care, compared with 22% of people who did not report substance use.
This study of people in King County, Washington makes several important points explaining why HIV-positive people are not getting HIV care and why they do not start antiretroviral therapy or start then stop.
First, the main reason people listed for not being in care was lack of health insurance. Many also said they could not afford care not covered by insurance. The researchers point out that Washington state, where this study took place, offers some form of health coverage for nearly everyone with HIV. Some people simply did not know this coverage is available. Also, the study took place before uninsured people could get insurance through the U.S. Affordable Care Act (Obamacare). That means everyone without insurance in this study now has a way to get insurance.
Getting health insurance or other government support for HIV care can be complicated. Case managers are professionals trained to help people get health care support, and to help with other nonmedical aspects of care. Your HIV provider's office can connect you with a case manager who will help you solve problems related to paying for care and keeping clinic appointments. Only about half of the people in this study had a case manager. Getting and working with a case manager can solve many problems related to HIV care.
Second, the study found that two thirds of HIV patients assessed had depression. People with depression feel sad much of the time and have a hard time motivating themselves to get things done. Almost half of study participants listed depression as a reason for not starting antiretroviral therapy, and almost half pointed to depression as a reason for stopping antiretrovirals if they had started. Depression is not a "bad mood" that will go away by itself, and it is not a sign of weakness. Depression is a disease that can be effectively treated with drugs, counseling, or both. If you think you have depression, talk about it with your HIV provider and work with your provider to plan a strategy to control depression.
Third, half of the people in this study reported substance use (often with methamphetamine, cocaine, or heroin) or drinking too much alcohol. Substance use and heavy alcohol drinking can both interfere with HIV care and antiretroviral therapy in many ways. But only one quarter to one third of this study group listed substance or alcohol use as an important barrier to HIV care, to starting antiretroviral therapy, or to continuing therapy. Substance use and heavy alcohol drinking cause many serious diseases that threaten health and interfere with HIV care. Again, your HIV provider can direct you to other health professionals and services that can help you control these problems.
Fourth, among the 60 people who had not started antiretroviral therapy, most listed antiretroviral side effects (77%) and concerns about the ability to take pills regularly (55%) as reasons for not starting. These are important concerns, but people with HIV should know these problems have become much less common with the latest antiretroviral combinations. The newest antiretrovirals are safer and easier to take than ever. Many antiretrovirals can be taken only once a day, and many are combined in a single once-a-day tablet. If you have not started antiretroviral therapy, your HIV provider can help you pick a combination that's easy to take and will probably work for you. U.S. HIV treatment experts recommend that everyone with HIV infection should start antiretroviral therapy, whatever their CD4 count.2 All but a few rare individuals need antiretrovirals to control their HIV and to lead a healthy life.
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