Those dealing with chronic conditions like alpha-1 antitrypsin deficiency (Alpha-1) can often feel like they’re constantly in and out of the doctor’s office. But while scheduling and getting to and from traditional in-person healthcare visits can sometimes be challenging, especially for those who live in rural areas or have mobility issues, regular check-ups help Alphas and their healthcare providers monitor their symptoms and prevent disease and disease progression.
Thankfully, improvements in communication technology have allowed telehealth to become more widely available to both healthcare providers and their patients. But while telehealth offers many advantages, it’s not a perfect solution for everyone. Understanding both the benefits and limitations of telehealth can help individuals with Alpha-1 make informed decisions about their care.
Read on to learn more about telehealth and discover how it can both offer support and, in some cases, simply not be an option for those living with Alpha-1.
What is Telehealth?
Telehealth refers to the delivery of healthcare services and information through technology, such as video calls, phone calls, or even mobile apps, to allow patients to communicate with their healthcare providers without needing to visit their offices in person. Some tools that allow for telehealth access include:
- Video consultations: Many healthcare providers offer access to video calls for their patients. Patients can discuss symptoms, get prescriptions, and receive advice just like in a traditional face-to-face visit.
- Remote monitoring: Patients with chronic conditions can use devices like blood sugar monitors and heart rate monitors that send data directly to their healthcare providers for ongoing monitoring. This helps the provider track health in real-time and make adjustments to care plans as necessary.
- Mobile health apps: There are apps that allow users to book appointments, message healthcare providers, and track their health metrics. Apps like MyChart let patients access test results, schedule appointments, and communicate with their healthcare providers.
- Text and phone consultations: For less complex issues, a patient might just need a quick consultation over the phone or via text with a healthcare provider. This can be used for things like medication refills, mental health check-ins, or answering basic health questions.
What is the difference between telehealth and telemedicine?
Sometimes used interchangeably, telehealth refers to a broad scope of services that can go beyond the healthcare provider–patient relationship and includes social support and health education, while telemedicine refers to more specific telecommunications from healthcare practitioner to patient, including the delivery of medical diagnostic and treatment information.
Learn about some of the key benefits of telehealth for individuals affected by Alpha-1 below.
Benefits of Telehealth
Let’s start with some of the advantages:
1. Convenience and flexibility
Telehealth can make it easier for individuals to schedule appointments at times that work best for them, eliminating the need to take time off work, arrange transportation, or spend time waiting in healthcare practitioners’ offices.
2. Easier access to specialized care
Finding healthcare providers who specialize in Alpha-1, such as pulmonologists, hepatologists, or genetic counselors, can sometimes be difficult, especially for those living in underserved, rural, or remote areas. Telehealth allows individuals to consult with specialists from anywhere in the country, reducing the need to travel long distances (or any distance at all).
3. Reduced exposure to infections
For individuals with Alpha-1, avoiding viruses and respiratory infections is an important aspect of health management. Telehealth allows patients to communicate with their healthcare providers without the need to visit high-risk healthcare settings like crowded waiting rooms and clinics, greatly reducing their risk of exposure to infectious diseases.
4. Health monitoring and management
Alpha-1 can be a progressive condition that requires ongoing monitoring of lung function, liver health, and overall well-being. Telehealth allows for continuous health management through virtual visits, remote monitoring devices, and telemedicine consultations. Data from devices like blood sugar and heart rate monitors can be automatically directed to healthcare practitoners, while patients can also use home spirometers or pulse oximeters to track their lung function, and send results to their healthcare provider for review. This proactive approach can help detect changes in one’s condition early, leading to better outcomes.
Note: Please consult your healthcare provider before beginning use of a home health monitoring device.
5. More personalized treatment plans
Telehealth can allow for more personalized, patient-centered care. Through regular virtual consultations, providers can tailor treatment plans to your specific needs. For those with Alpha-1, this might include adjusting medications and recommending physical therapy or preventive measures such as vaccinations and lifestyle changes.
6. Increased access to education and resources
It’s important for those living with Alpha-1 and other chronic conditions to stay up-to-date on disease risk factors and treatment options. Telehealth can provide a convenient platform for educational resources, including virtual support groups, informational webinars, and one-on-one discussions with healthcare professionals.
7. Mental health support
It is estimated that over half of Americans live in a Mental Health Professional Shortage Area, meaning that there aren’t enough mental health professionals to serve the current population of that area. Telehealth services can provide mental health support through virtual therapy sessions or counseling and help those who may not have access to a specialized therapist near home.
8. Saving money
By reducing the need for travel, transportation, and in-office visits, telehealth may be able to help lower out-of-pocket expenses.
9. Uniting your healthcare team
Treating Alpha-1 often requires input from various healthcare professionals, including lung and liver specialists, nutritionists, and physical therapists. Telehealth can help individuals more easily coordinate care and share information between different healthcare providers.
Drawbacks of Telehealth
Despite its many advantages, telehealth may not meet every need, especially when managing a complex condition like Alpha-1.
1. Technology access and literacy
Not everyone has a reliable internet connection, access to a smartphone or tablet, or the technical knowledge needed to navigate video calls or mobile health apps. This can exclude some individuals, particularly older adults and those living in low-resource areas from fully benefiting from telehealth.
2. Physical assessments are still necessary
Virtual visits limit a provider’s ability to conduct hands-on physical exams, pulmonary function tests, or blood draws. These are essential in managing Alpha-1 and monitoring for disease progression. Alphas should not rely solely on virtual visits, and doing so, could result in missed diagnostic clues or delayed interventions.
3. Inadequate insurance coverage and evolving billing laws
While telehealth services have been widely reimbursed during the public health emergency, that flexibility is temporary. Through September 30, 2025, Medicare will continue covering telehealth services delivered from any location, including your home.
However, starting October 1, 2025, most Medicare-covered telehealth services will only be reimbursed if the patient is physically located in a rural area and receiving care from a medical facility or office, and not from home.
Exceptions to this rule will include home dialysis visits for End-Stage Renal Disease (ESRD), stroke evaluations, and mental health or substance use disorder treatments. For all other types of care, patients may lose access to telehealth unless they can visit an approved setting in a designated area.
4. Provider licensure restrictions
In most cases, physicians must be licensed both in the state where they practice and the state where the patient is located. While some cross-state licensing exceptions exist for telehealth, they are limited and vary widely. This means that if you want to see a top Alpha-1 specialist in another state, you may still need to travel for in-person care.
5. Not suitable for all conditions or symptoms
Sudden worsening of symptoms, like shortness of breath, fever, or jaundice often requires in-person assessment to be addressed as quickly as possible. Telehealth may not be sufficient in these cases and could delay necessary emergency or specialty care.
Conclusion
By offering remote access to healthcare specialists, ongoing monitoring, mental health support, and educational resources, telehealth can be a valuable tool for individuals who may not always be able to easily access in-person care. But it’s important to recognize that telehealth is not a complete substitute for visits to your healthcare providers, especially when physical exams, imaging, or lab testing are needed.
Telehealth access is also evolving. Changing billing laws and licensure rules may impact who can use telehealth, how often, and where, with major changes set to occur in 2025.
For those with Alpha-1, a hybrid approach may offer the best of both worlds. Some Alphas may find that they can take advantage of the convenience of telehealth for routine management while maintaining in-person visits for critical evaluations and testing.
As telehealth continues to evolve, we must ensure that it enhances, rather than replaces, comprehensive care for members of the Alpha-1 community.
Sources:
https://www.hrsa.gov/telehealth/what-is-telehealth
https://www.fcc.gov/general/telehealth-telemedicine-and-telecare-whats-what
https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/telehealth/art-20044878
https://pmc.ncbi.nlm.nih.gov/articles/PMC9447387/
https://www.americantelemed.org/resource/why-telemedicine/
https://alpha1.org/letter-to-the-honorable-pam-bondi-attorney-general-of-the-united-states/