Long before the world knew of COVID-19, a decades-long healthcare crisis was playing out for patients across the country — a severe shortage of certified adult healthcare providers. Persons with disabilities, and who live with other complex congenital conditions such as spina bifida, require life-long, in-person specialized care. The global pandemic only exacerbated this crisis as more health care providers closed offices and home health aides left the workforce to protect themselves from the virus.
Complex conditions like spina bifida require frequent specialty appointments and procedures, as well as ongoing primary and home care. Our analysis of existing data revealed tens of millions of Americans are living with complex medical conditions like spina bifida, Alzheimer’s, cancer, congenital heart disorders, multiple sclerosis, and many other rare diseases.
As the pandemic caused doctors to shutter offices in an attempt to slow the spread of the deadly virus, Congress, federal agencies and insurance providers passed temporary legislation and rules that gave more flexibility to doctors to use telehealth services.
While there is no doubt that telehealth is a powerful tool that can enhance a regiment of in-person care, congressional and regulatory action must not overlook the importance of patient choice and needs for in-person care too. For many patients, telehealth was a lifeline to their doctor and needed care; and at the same time, for many it was also just a necessary bridge until they could return to the office. For adults with spina bifida, it became the only way to see one of the few specialists in this congenital condition in the nation.
As members of Congress and regulators consider creating new or making permanent the current patchwork of telehealth regulations, they must not seek rapid, unchecked action that does not factor in unique patient needs. It’s critical they do not inadvertently deter in-person visits or create a reimbursement framework that discourages either form of care while at the same time recognizing that, for some people, it may be the only way to see a specialist in rare conditions.
There are many times when a thorough physical exam is needed, requiring in-person care. Situations range from screening and diagnosing for cervical, breast and prostate cancers to treating conditions like epilepsy, spina bifida, and movement disorders and replacing medical devices.
Dr. Daniel Marchalik, medical director at MedStar Health recently told AMA Moving Medicine, “For some visits that require a physical exam, telehealth may not be the best option. His examples included “a new lump that can’t be seen on video or something that requires touch to make a diagnosis.”
For some patients, a video visit makes sense, and video visits undoubtedly have a place in the menu of patient care options. Telehealth can facilitate healthcare delivery for rural residents, people with limited transportation options, and for some patients telehealth visits may be preferable to in-person care.
But for many, such as those with movement disorders or conditions that limit range of motion such as spina bifida, the precise movement and/or positioning of both the body and the camera is difficult, if not impossible.
An August 2020 study of senior citizens found more than 13 million seniors cited issues with technology, physical challenges and economic circumstances as contributing factors to them not scheduling telehealth visits.
In-person visits, whether for new patients or on a continuing basis, may help build the doctor-patient relationship and make patients more comfortable explaining their symptoms. Likewise, some patients may opt for in-person visits over telehealth because they have concerns over privacy and technology. And other patients may prefer the ease of telehealth or speak more candidly over video.
There is no doubt that telehealth is an important tool to expand healthcare options for patients, but any permanent laws or regulations must look to protect patient choice and access and be augmented with legislation to allow providers to be adequately compensated. Policymakers must not accidentally create a system that financially discourages in-person care over telehealth for patients who want or need in-person visits. However, we should not return to the former status quo in which telehealth was never an option.
As the public health emergency winds down and Congress considers the future of telehealth, it is important that a deliberative and standardized framework is established that takes into account the specific needs of diverse patient sets. Additionally, reimbursement for services must be adequately addressed to ensure that patients are not forced to accept either virtual or in-person visit.
Just as every disease and patient is different, so too are their needs. Doctors must be able to see their patients face to face and patients must be able to access and afford vital in-person care when necessary and desired.
Sara Struwe is the president and CEO of the Spina Bifida Association, the national advocacy organization which advocates for the standard of care for people living with Spina Bifida.