Finding our New Normal: The Rise of Telemedicine for LAM

Posted on April 22, 2021   |   


Telemedicine – the use of video technology to offer “virtual visits” as a substitute for conventional face-to-face visits – has been available for over a decade. However, its use was limited because neither government nor commercial insurers provided reimbursement for telemedicine visits. As a result, only a handful of health systems offered this option, and patients choosing this option often had to pay out of pocket. The COVID-19 pandemic has accelerated the widespread implementation of telemedicine. Recognizing that telemedicine offered an attractive and safe option for delivery of outpatient care in the midst of a pandemic, the federal government temporarily approved full coverage of telemedicine services for all Medicare and Medicaid recipients, and commercial insurers largely followed suit. Although this emergency approval is designed to facilitate healthcare during the COVID-19 pandemic, it is anticipated that both government and private health care insurance plans will continue some form of coverage, allowing telemedicine to assume a permanent role in health care in the United States. The LAM community can clearly benefit from the efficiency, convenience, and enhanced access to LAM Clinic providers that telemedicine visits can provide.

Video telemedicine encounters require that patients have access to, and familiarity with, a smartphone, tablet, or computer with both a camera and microphone. There are numerous software platforms available to conduct video telemedicine encounters, and the technology is constantly evolving. Still, some require that the patient download an app prior to the scheduled visit. The software utilized must be HIPAA-compliant (i.e., it must have measures to protect confidential patient health information) and for this reason, familiar software platforms such as FaceTime and Skype do not qualify for use in telemedicine encounters (though there is a waiver during COVID-19 that permits their use). Telephone only encounters can be substituted for video encounters when a patient does not have the necessary equipment, WiFi connection, or comfort using electronic devices or software.

Video telemedicine encounters allow for a virtual “face to face” conversation similar to that of a conventional office visit. They do not, however, allow the physician to perform a physical examination. Because of this, they are best suited for routine follow up visits for patients previously seen by the provider.  In contrast, virtual visits are discouraged for most new patient visits and for established patients experiencing a new symptom such as new or worsening shortness of breath, where valuable information may be gained from the physical examination.

For LAM patients, follow up visits often involve testing, such as pulmonary function tests (PFTs), bloodwork, and/or x-rays. When a telemedicine visit is substituted for an actual visit to the LAM Clinic, arrangements must be made to have the testing performed locally and the results sent to the physician before the scheduled telemedicine appointment. For radiology studies performed locally, it is essential that the LAM physician receive the actual images (typically on a CD) and not just the report.  Since the quality of pulmonary function laboratories varies, it is essential to utilize a high-quality facility that can provide accurate testing, including the option of post-bronchodilator spirometry to allow proper comparisons with testing performed at the LAM Clinic. An alternative option is home-based lung function monitoring, in which patients are provided a hand-held spirometer that records and transmits the lung function measurements to their physician.

Telemedicine visits offer several attractive features for LAM patients. These virtual visits are particularly convenient for patients who live a considerable distance from a LAM Clinic and for whom travel can be both lengthy and costly. Since telehealth visits do not require the patient to travel, park, or navigate through the medical facility, and since they typically start at the scheduled time, virtual visits are time efficient. A typical follow-up visit takes 30 minutes instead of many hours that can be consumed with a trip to the medical center.

On the flip side, virtual visits have several limitations. As mentioned previously, the inability to perform a physical examination limits their usefulness in certain situations. Also, not all patients own the necessary electronic devices or have access to adequate WiFi signal quality. There can occasionally be annoying technical issues such as freezing video images or distortion of the sound quality, particularly if either participant is experiencing a weak WiFi signal. Finally, there has been concern that video telemedicine lacks the warmth of face-to-face interaction and undermines the very personal nature of the doctor-patient relationship. The fact that virtual visits have been well-received by most physicians and patients who have participated in them suggests that this last concern is largely unfounded.  

By establishing a network of specialized clinics, The LAM Foundation has allowed patients with a rare lung disease to receive care from experts familiar with the disease and its treatment. Adding the option of telemedicine to this care model will enhance access to these clinics, reduce the financial burden for those traveling long distances, and allow more time-efficient visits for those with work, school, or other obligations.


About Robert Kotloff, MD: Dr. Robert M. Kotloff specializes in pulmonary medicine with expertise in diagnosing and treating patients with lymphangioleiomyomatosis and other cystic lung diseases. He also maintains an active interest in general pulmonary medicine and, in particular, evaluating patients with complex pulmonary disorders.

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