Telehealth Access Improves Care for People with Lupus
While it often seems like Congress is in a stalemate, it has been encouraging to see bipartisan movement and recent Committee markups in the U.S. House of Representatives of legislation that would extend current telehealth flexibilities. Lawmakers must build upon this movement by enacting legislation that protects expanded telehealth access for as long as possible and before current Medicare flexibilities expire at the end of this year. Continued delay puts millions of Americans with chronic conditions like lupus at risk of losing access to the critical care they rely on.
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body and affects an estimated 1.5 million Americans. It is difficult to diagnose, hard to live with, a challenge to treat, and can be fatal. In lupus, the body’s immune system becomes unbalanced, causing inflammation and tissue damage to virtually any organ system in the body including the skin, joints, heart, lungs, kidney, and brain. Given the heterogeneity of the disease and unpredictable nature of lupus, consistent and adaptable healthcare is crucial for those living with lupus. Telehealth has the potential to provide people living with lupus and other chronic conditions with the flexible and dependable care they need for managing complicated diseases and conditions.
Extreme fatigue, joint pain, and inflammation throughout the body are common symptoms of lupus, which can make traveling to a doctor’s appointment a very challenging task for a person with lupus. People with lupus are also especially prone to infection caused by germs like viruses and bacteria. Since lupus affects the immune system, the body’s ability to fight bacteria, viruses, and other microbes that can cause illness, is limited. Additionally, people with lupus often take immunosuppressive medicines to control their overactive immune system and these drugs can limit the ability of a person with lupus’ immune system to respond, leaving them more susceptible to infectious agents. Telehealth can reduce the risk of infection for people with lupus and other immunocompromised diseases.
With a shortage of rheumatologists, many people with lupus do not live close to a rheumatologist and face long wait lists. Telehealth significantly expands access to healthcare, particularly for specialty care. With virtual care options, patients can choose from a larger pool of specialists and access care quicker, improving care and treatment.
A 2022 study found that patients with lupus nephritis receiving follow up visits via telemedicine resulted in better patient satisfaction and similar short-term disease control as patients receiving standard of care. This increased access is an important option and element of a comprehensive treatment plan, which does not replace the importance of in-person care, but rather enhances overall care.
Finding the right treatment for lupus can be challenging, necessitating tailored approaches. The unpredictability of the disease can make attending doctor's appointments grueling. Telehealth allows patients to have appointments from the comfort of their homes, avoiding barriers related to transportation and mobility.
“I have MS and Lupus and experience a lot of issues with my legs, so getting around can sometimes be difficult,” said one New Jersey resident. “But because of telehealth, I’m still able to access the care I need from my home.”
Telehealth emerged as a vital solution during the pandemic, leveraging technology to connect patients and providers more frequently and conveniently. It facilitated flexible scheduling, emergency consultations, streamlined prescription refills, and enhanced overall accessibility. Among Medicare recipients alone, telehealth visits increased from about 5 million to more than 53 million in the beginning of the pandemic. Telehealth swiftly became standard practice for those living with chronic disease nationwide.
Telehealth remains integral to many people living with lupus. When patients experience severe pain or sensitivities, telehealth allows them to express their concerns to providers without waiting months for an appointment or leaving home. It also eases the burden on providers, who may not have the time to see all of their patients in traditional clinic settings. Many patients find telehealth appointments as rewarding and informative as in-person visits, with physical examinations still utilized alongside telehealth for the highest quality care.
Unfortunately, millions of patients are at risk of losing access to these vital telehealth flexibilities at the end of 2024 without urgent congressional action. Medicare telehealth flexibilities were extended under Public Health Emergency (PHE) in 2020, and again in 2022, but expire at the end of this year.
The Lupus Foundation of America works daily to improve the quality of life for all people affected by the disease, helping make the lives of people with lupus better today. We recognize the need for Congress to enact protections for telehealth services, extending current flexibilities for at least two years without additional restrictions, to safeguard access to care for people living with lupus and other chronic diseases.
Patrick Wildman is the Senior Vice President, Advocacy and Government Relations at the Lupus Foundation of America.
