Sickle cell anemia is a condition that affects more than 200,000 people in the United States every year. The treatment requires many patients to see their doctor on a monthly basis, which can be difficult for people living in rural areas or without direct access to specialized medical care. However, with an increase in telemedicine technology, more patients are able to receive effective treatment remotely. They can get the help they need without having to set foot in a doctor’s office. Here’s a look at how sickle cell patients can use telemedicine to improve their care.
Sickle cell anemia is a group of inherited red blood cell disorders where there is a problem with a person’s hemoglobin (the protein in red blood cells that carries oxygen through the body). Hemoglobin cells are normally disc-shaped, but with sickle cell, the hemoglobin forms into stiff rods within the cells that change the shape to a sickle shape. They are not flexible and can’t change shape easily, resulting in many of them bursting apart as they move through the blood vessels. Normally, healthy cells last between 90 and 120 days. However, patients with sickle cell anemia have cells that only last 10 to 20 days. The body experiences difficulty in making enough new cells, causing a lack of red blood cells.
Sickle cell anemia is caused by a defective gene and can be diagnosed with a blood test. In the U.S., most patients are African American, although some people with Hispanic, Southern European, Middle Eastern, or Asian Indian backgrounds can have the diagnosis too. Currently, about one in every 13 African American infants is born with the sickle cell trait, while about one in every 365 African American children is born with the full sickle cell disease.
If people have sickle cell disease, there are usually symptoms present during the first year after being born (typically around five months old). Some symptoms include painful swelling of the hands and feet, fatigue, fussiness, and jaundice. The severity of these symptoms can differ from person to person and can vary over time. Patients with sickle cell anemia often experience pain crises. This is when the sickle cells stick to the vessel walls, creating a blockage that slows or stops the flow of blood. Oxygen then can’t reach the tissues. This lack of oxygen can cause sudden and severe pain with no warning. These crises usually result in the patient seeking treatment at a hospital. Complications from the disease can also present as anemia, organ damage, and infections.
As of now, the only cure for sickle cell anemia is bone marrow or stem cell transplantation. These transplants can be extremely risky procedures and can have serious side effects, so they’re usually only used in severe cases with children. There are some treatments that can help alleviate symptoms and lessen complications. These include antibiotics to prevent infections, pain relievers for acute or chronic pain, and blood transfusions to help with severe anemia. Many patients take the medication hydroxyurea, which increases the amount of fetal hemoglobin in the blood, resulting in a reduction in sickle cell complications. Although there are great strides being made for improved treatment options, the average life expectancy for sickle cell patients is between 40 and 60 years old.
There are some ways that sickle cell patients can see hope, and one aspect of that is through the increased use of telemedicine in treatment regimens. A great example of this is in Georgia through a program at Augusta University. This program utilizes telemedicine and video chats between doctor and patient to help make treatment more accessible, convenient, and affordable. The first appointment is made in person so the patient can get a full medical workup, then the follow-up meetings can be done remotely. Dr. Betty Pace is a big part of this program, and she has seen over 250 patients with sickle cell disease via video conference during the last two and a half years of the program.
“Access to care is so important, not just with sickle cell disease, but for any [wellness] visits and preventative medicine,” Dr. Pace said in an interview with a local news channel. “The possibilities are endless of how we can use telemedicine.” She continued by saying that the patients in the program are eager to use this mode of treatment. “We asked them would they prefer the telemedicine to something else and pretty much hands down, they say yes.”
All of the video conference appointments consist of a camera, Internet connection, and Bluetooth devices. Dr. Pace explained, “We can do nose and throat exams. We can listen to the lungs with a Bluetooth stethoscope. We listen to the heart sounds and then we have a nice monitor where we can look at skin rashes.” Even though they’re conducted remotely, these exams can be as thorough and as effective as an in-person visit.
Plus, there are many benefits to the telemedicine method. Patients can schedule appointments at more convenient times and don’t have to worry about transportation to a doctor’s office (especially if they live in rural areas). Additionally, costs can be more affordable since patients won’t have to factor in office fees to their visit. There are also no wait times, which can be a frustrating aspect of visiting in-person clinics. Telemedicine can allow for instant care for sickle cell patients who need to be monitored closely or who might be in the middle of a pain crisis. By offering more convenient and accessible care, these patients can receive treatment no matter where they live or how far they are from sickle cell anemia specialists.
It’s likely that the use of telemedicine in treating sickle cell patients will continue to grow as more medical professionals see the success of the programs like the one at Augusta University. Video conferences will probably become one of the main tools that doctors use to communicate with their patients in the future. And most importantly, sickle cell patients will get the care they need to manage their symptoms and lead healthy and full lives.