Falling Behind on Crucial HIV Treatment: A Guide to Getting Back on Track

Keeping up with HIV treatment isn’t always easy. Anyone can face setbacks along the way. Staying on top of doctor’s appointments and taking medications regularly can feel overwhelming to manage alongside everyday responsibilities. But it can be done, and so many are proof that living an active, healthy life is possible with HIV.

“A new diagnosis can be very overwhelming. Just take everything one step at a time,” author and HIV advocate Jessica Glaspie told MadameNoire.

While there is no cure for HIV, it is not a death sentence. Rather, with today’s available treatment options, HIV is classified as a treatable chronic disease. With the proper care and adherence to a treatment plan, it is possible to live well while managing HIV.

Why do some people fall behind on HIV treatment?

“Adherence is the most important thing to do when living with HIV,” said Glaspie, author of Life, Love, and HIV. This means keeping up with appointments, medications, and lab tests to monitor how well the HIV medications are working. “Having to get labs done so often can be daunting,” she said. “It can seem like a lot when you have so many other tasks to complete.”

People may fall behind on crucial treatment for a number of reasons—a common issue is affordability. Being uninsured, underinsured, or unable to afford medications makes staying on track even harder.

Lack of transportation to and from appointments is another common barrier to care. “Public transportation isn’t always an option depending on your location, and some people simply cannot afford it,” said Glaspie.

Mental health is another major factor that can impact a person’s willingness to stay in care. “People are in denial that this is their new normal,” she said. “Not accepting the fact that they are living with HIV can directly affect their ability to continue in care.”

Glaspie experienced this hurdle herself, having fallen behind on HIV care in the past. “(I experienced) episodes of depression where I had no desire to even get out of bed. I would reschedule appointments again and again until I had the energy to go outside,” said the mother of three.

If you’ve fallen behind on HIV care, you’re not alone. Here are some steps to help get you back on track.

1. Be honest with your health care provider.

If it’s been a while since you’ve seen your HIV health care provider, be honest about the challenges that have made it difficult to stay on top of treatment. This way, they can help you find potential solutions.

If you don’t like your health care provider, it might be time to find a new one. It’s okay to be picky, Glaspie said. “If they do not make you feel valued or worth their time, find someone that does. Find a doctor that makes you feel safe. It was always important to me to build rapport with my medical professional and not feel like a number when being cared for.”

“I have lived in four different states since my diagnosis and the care looked different in all four,” she added.

2. Create a routine that works for you.

Set up a routine that is easy to follow and aligns with your daily rhythm. “Routines help you develop muscle memory where you do things by habit instead of feeling forced,” said Glaspie. “Repetition is key here! Then, it will just become a part of your normal day-to-day life.”

Find the tools that will help you stay organized. “I have a seven-day pill box that helps me a lot. Sometimes my days run together and I forget if I took my meds that day,” said Glaspie. “Set Alexa, Google, Siri, or whatever AI tool you have to remind you to take your meds.”

3. Lean on your support system.

Having a friend or family member that you can reach out to for support can help ease the stress and anxiety of maintaining a care regimen. Whether they accompany you to doctor’s appointments or check in with a call or text, having a support system is a great way to keep you on track.

“You have to have patience to get through these processes,” said Glaspie. “Give yourself grace and if you feel frustrated to the point of giving up, ask someone to help you find care or complete paperwork. Lean on your support system when you can. They will be a vital part of your treatment!”

Another way to find community is to join a peer support group where you can connect with other individuals who are also managing HIV and can relate to what you are going through.

‘You are good enough and you deserve to be here.’

The resources are out there, whether you just need someone to talk to or need help connecting to care. Reach out to local AIDS foundations or HIV clinics near you.

“Nine times out of ten, there will be local resources available to help you on your HIV journey,” said Glaspie. “There are a lot of non-profit organizations that can help you get into care and stay in care. They will assign you a case manager or patient advocate that will help you along the way.”

“Remember that ‘HIV care’ is caring for your whole self, not just the virus,” Glaspie added. “Always remember, you are enough and you deserve to be here.”

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