This guest blog was written by Rosie Rosati, health advocate for the Mesothelioma + Asbestos Awareness Center.

In recent years, the healthcare industry has begun embracing the benefits of telehealth and acknowledging the obstacles this digital advancement can overcome. The patient-centered technology provides easy access to quality care for patients residing in remote areas or living in locations with limited access to specialists. Through video, digital images, and web-based applications, this technology allows a physician to remotely manage and monitor a patient’s symptoms, consequently saving them significant amounts of energy, time, and money.

Telehealth is being deployed across the industry, yet it has been particularly helpful for those living with rare diagnoses who often have limited information about their condition and the best route for treatment. This method of care not only makes it easier for patients to receive the necessary monitoring and treatment they need, but connects researchers, physicians, and specialists from around the world, allowing them to collaborate and determine the best way to manage and treat each individual.

Living with a rare diagnosis

Rare diseases were once called “orphan diseases” because researchers and pharmaceutical companies expressed little interest in studying these difficult and uncommon cases. Fortunately, the Orphan Drug Act (ODA) was passed in 1983, which advocated for rare disease patients and their fight for substantial treatment and care. This movement encouraged pharmaceutical companies to invest in research and treatment for those suffering from uncommon illnesses, which has resulted in 7,000 rare conditions recognized today.

Although only 5% of rare diseases have access to FDA-approved treatments, the ODA has proved to be promising as the pipeline for rare diseases continues to grow. This progress can be seen in the 566 medicines in review for patients suffering from rare conditions, with 40% of these treatments targeting patients with rare forms of cancer. However, while pharmaceutical companies are investing more money into researching and developing orphan drugs, patients are still often left feeling frustrated and alone as they realize how little is known about their disease and personal experience.

Early detection is a pressing challenge, so patients whose symptoms baffle health professionals may be forced to visit a handful of doctors over the span of several years before receiving an accurate diagnosis. This overwhelming process sometimes requires patients to endure extensive travel which can be physically and financially draining, especially if their condition has regressed. These challenges shed light on the advantages of telehealth, which can provide remote consultations through video, phone, or email, and have the potential to improve a patient’s outcome.

The technology has immense potential for the one in eight adults aged 20 or older diagnosed with a rare form of cancer, which can be extremely difficult to diagnose because symptoms are usually nonspecific and confused with more common diagnoses. Receiving a valid and early diagnosis has become an undeniable obstacle for rare disease patients and clinicians, making the idea of tele-oncology appealing to those struggling to determine the root of their condition. In the absence of telehealth, patients suffering from uncommon yet rapid growing forms of cancer, such as mesothelioma, may spend years traveling the country to see various specialists before receiving a diagnosis, resulting in fewer treatment options so late in the game.

Telehealth may enable physicians to identify when a patient is at an increased risk of cancer, which can prompt an early cancer screening and better chance of responding to treatment. With the United States expected to face a significant drop in the number of working oncologists by 2020, the upcoming deficit has inspired healthcare professionals to embrace tele-oncology and remote cancer care in an effort to reduce the burden for patients to travel to a quality specialist.

Giving a voice to rare-disease patients

Support for telehealth is rapidly growing, with research from HIMSS Analytics indicating that approximately 71% of healthcare providers have already adopted this innovative technology, increasing from approximately 54% in 2014. This technology has the power to effectively assist doctors in diagnosing and treating a patient earlier than ever before, ultimately improving a patient’s quality of life. This innovative communication tool can give underserved populations, including those suffering from a rare condition, a true voice within healthcare and allow them to receive the recognition and care they deserve.


  • Christensen Institute
    Christensen Institute