Managing HIV Symptoms and Treatment

Some good news came from our HIV In America 2019 survey when we asked people about managing their HIV symptoms and treatments. Some challenges were also revealed.

The good news is that nearly 9 out of 10 people who took our survey feel like their HIV is well controlled by their current treatment plan. Treatments included everything from prescription medications, to vitamins and other supplements, exercise, diet, and counseling.

Managing their chronic condition

Roughly 7 out of 10 people surveyed feel that:

• They do a good job of taking their drugs as prescribed
• Take an active role in their health care
• Find it easy to take their medicines when and where they are supposed to
• Feel confident that they are doing what is needed to take care of themselves

Nearly everyone living with HIV surveyed were taking a combination therapy. Combination therapy uses multiple medications or classes of medications into one pill to treat HIV.

HIV symptoms that impact daily life

Despite feeling like their HIV was under control, only one-third of those surveyed reported feeling no HIV symptoms. Seven out of 10 had some symptoms despite doing everything possible to manage those symptoms. The most common issue that people reported was fatigue, or feeling tired. Nearly half of the 400 people who took the survey felt tired and thought this symptom affected their daily life the most.

Other common symptoms reported were:

• Joint aches and pains (39 percent)
• Insomnia or trouble sleeping (36 percent)
• Muscle aches and pains (32 percent)
• Headache (29 percent)
• Diarrhea (25 percent)
• Night sweats (24 percent)

Less common symptoms were upset stomach, nausea, vomiting, shortness of breath, sore throat, unintended weight loss, and flu-like symptoms.

Managing HIV with the help of a healthcare professional

Talking to a doctor about treatment

More good news came when we asked people who are living with HIV questions about their relationship with their health care team. Most (84 percent) feel comfortable talking with their doctor about treatments and other aspects of having HIV. Most feel like their doctor understands their concerns about having HIV and clearly explains test results and treatment options.

Feeling informed and educated about HIV means that over half of those surveyed do not worry about transmitting HIV to others.

Satisfaction with care with room for improvement

Overall, 3 out of 4 people surveyed are satisfied with the care they get. However, some areas for improvement in the doctor-patient relationship included:

• Nearly one-third said their doctor does not regularly ask about how treatments affect their quality of life.
• Over half said their doctor’s office does not help with insurance appeals and other money matters related to their HIV care.

Concerns about long-term impact

Living with HIV brings specific concerns for those living with the chronic condition. Nearly 2 out of 3 people worry about the long-term symptoms of HIV and long-term side effects of treatment.

Ability to cope and mental health

Only half of the 400 people surveyed felt like they were coping well with their symptoms and treatment side effects. These same individuals were worried about how HIV affects their mental health and feel judged by others. Only 3 out of 10 people surveyed felt comfortable sharing their diagnosis with others.

About the survey respondents

The 2019 HIV In America survey was conducted online from July through September of 2019. Roughly half of the 400 survey respondents were between ages 40 and 59. Another 30 percent were under 39. Nearly 8 out of 10 were men. Over half live in households earning less than $30,000 a year. Half are single, have never been married, and are employed. Four out of 10 have a college degree, and almost all had health insurance.

The 2019 HIV In America survey was conducted online from July through September of 2019. A total of 400 people completed the survey.