What prevents people from receiving treatment for AMD?

Wet age-related macular degeneration (wet AMD) is a disorder characterized by the growth of abnormal blood vessels in the back of the eye. These blood vessels leak blood and fluid into a part of the eye called the macula. Wet AMD causes a type of vision loss called central vision loss, where a person loses the ability to clearly see details. It can result in legal blindness, especially when left untreated.

The main treatment for wet AMD is anti-VEGF therapy. These medications are injected into the eyeball and work by blocking vascular endothelial growth factor, a protein that promotes the growth of new blood vessels. Blocking this protein helps stop the abnormal blood vessels from leaking.

Anti-VEGF medications can be effective at slowing vision loss, and in some cases, improving vision. However, a person needs to be able to access these treatments to see these benefits, and research shows that many people with wet AMD are unable to receive anti-VEGF therapy, for a variety of reasons.

Common barriers to treatment for AMD

While everyone’s experience is different, it helps to understand the things that can get in the way of treatment. Below is a look at some common barriers to care for people with AMD, with a few ideas on what you can do to overcome these barriers:

Transportation barriers

Treatment for wet AMD will typically involve regular appointments with healthcare providers, including appointments for injections, follow-up exams, and monitoring for changes. For a person with vision loss—who may not be able to drive or travel on their own—attending regular healthcare appointments can be difficult.

What you can do: Start with friends and family, and ask for a ride or help getting to an appointment. Also look for local support resources that provide transportation to healthcare appointments—your healthcare provider may be able to provide a recommendation.

Psychological barriers

There are a number of psychological barriers that can prevent a person from receiving anti-VEGF treatments. While the procedure is typically painless, the idea of getting an injection in the eye can make a person anxious. Vision loss often affects mental health. Low moods and depression can make it more difficult to manage any health condition. Vision loss can also limit a person’s independence, and a person may feel like a burden to others if they need to ask for help.

What you can do: If you are nervous or anxious about receiving an injection, tell your healthcare provider—they can explain the process and may have suggestions to help you relax. If you are experiencing low moods, feeling like a burden, or experiencing other negative emotions, it’s important to talk to a healthcare provider. Addressing these feelings is an important part of taking care of your health.

Financial barriers

Many people go untreated or undertreated because the out-of-pocket costs of treatment are too high. This is true for AMD as well as many other health conditions.

What you can do: If you are concerned about the cost of treatment—for AMD or another health condition—talk to your healthcare provider. Ask about working with a medical social worker. Medical social workers are professionals who help people navigate the healthcare system, including applying for financial assistance and other resources.

Managing coexisting conditions

Having to manage one health condition is difficult. Having to manage multiple health conditions at once can be many times more difficult. There are multiple providers, multiple appointments, different medication schedules to follow, and increased medical costs. It can be time consuming and overwhelming, and it can make adhering to treatment for any one condition more difficult.

What you can do: Talk to your primary care provider—and if you do not have a primary care provider, find one. Book an appointment with the goal of talking to your primary care about care coordination between your different healthcare providers.

Provider and system barriers

These refer to barriers related to your interactions with your healthcare providers and/or the healthcare system. For example, if you and your healthcare provider have a difficult time communicating due to differences in language or personality. Or if you are unable to find an in-network specialist, or schedule an appointment at a time you are available.

What you can do: Again, a medical social worker can be a great person to talk to. Medical social workers can help you navigate many different barriers in healthcare.

Asking for help and support

Sometimes a barrier can be difficult to identify. It can help to write down your thoughts on the matter, and your experiences. It can also be helpful to talk to a loved one or a trusted friend about your experiences and have them take notes—because wet AMD can make tasks like writing difficult, but also because a friend or loved one can offer support.