Rare Diseases and the Role of Telemedicine

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February is a month that’s often dominated by red and pink hearts. But for some 30 million Americans, February is when their plight comes to the forefront.

February 28 is Rare Disease Day. Unfortunately, having a rare disease is more common than the name suggests.

We know of about 7,000 rare diseases and disorders, and those suffering from them often feel alone in their struggles. People with rare diseases often have unmet needs, and wait roughly 4.8 years for an accurate diagnosis. Unfortunately, even after the correct diagnosis is made, 95 percent of rare diseases have no treatment options or cures.

The purpose of Rare Disease Day is to raise awareness within the general public and decision makers to improve options for those who are suffering.

One glimmer of hope for those with rare diseases is the emergence and growing prevalence of telemedicine, which can afford those dealing with an unknown illness to access healthcare earlier than those who must go to a doctor's office. Starting this process as soon as possible can ensure a broader range of viable treatment options.

One such disease is rare, but preventable, mesothelioma cancer. According to a 2017 report by the U.S. Centers for Disease Control and Prevention, which reports up to 2,800 new cases of mesothelioma in the United States each year. Like many rare illnesses, prognosis for the cancer is poor and there is currently no cure, but life expectancy can improve with early diagnosis. For example, the five-year survival rate for stage-1 peritoneal mesothelioma patients is 87 percent, but only 29 percent for stage IV.

Access to telemedicine can make it easier for patients to get a slight cough checked. Without such access, one might wait until that cough has progressed to something much worse - like mesothelioma cancer - before they go to their doctor's office.

Telemedicine can be equally beneficial once treatment begins. Doctors at Michigan State University have been using telemedicine and more traditional physical outreach to treat children with chronic hematologic disorders, by allowing patients to be seen by specialists far from the patient's local doctor's office.

Costs for these patients are dramatically reduced. The cost for patients to attend clinics locally and receive specialty care remotely through telemedicine is approximately $40. Compared with $1,275 for patients who drive from the Upper Peninsula to Michigan State University and $1,877 for patients who travel by air to receive care their care.

Any illness can be a financial burden, but for those with rare diseases, especially those who live in rural areas, that economic burden can be prohibitive.

"Rare Disease Day" is an effort to encourage everyone to get regular checkups, and perhaps prevent a difficult battle down the road. The National Organization for Rare Disorders is hosting a 7,000 Mile "Rare Movement." Participants can pledge dollars to walk, run, or bike, 7,000 miles collectively throughout the month of February. Join the movement today and be sure to #ShowYourRare! For more information on Rare Disease Day, go to https://www.rarediseaseday.org/

About the Author

Rachel Lynch is the press and media coordinator for the Mesothelioma Cancer Alliance. The organization's work is focused on advocacy for patients with mesothelioma cancer, and raising awareness of the risks of asbestos exposure and its potential health impacts. For more information see their website, www.mesothelioma.com.