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Treating a Rare Disease from Home

How can policymakers keep care accessible for seniors with a debilitating vision condition called thyroid eye disease? By allowing for infused treatment at home, suggests a new survey of Medicare beneficiaries.

As reported by the Vision Health Advocacy Coalition, home infusion could allow people to access thyroid eye disease treatment without risking exposure to the coronavirus or other infectious diseases, such as the flu.  It also could free patients from the logistical challenge of traveling to a clinic for treatment, made doubly difficult because the condition can impair one’s vision.

An autoimmune disease, thyroid eye disease results in progressive inflammation in tissue around the eyes that causes pain, bulging eyes, double vision and, in severe cases, vision loss.  The Food and Drug Administration approved the first drug specifically for thyroid eye disease earlier this year.

Key survey findings from the Vision Health Advocacy Coalition include:

Thyroid eye disease has a multifaceted impact.

  • 90% patients say thyroid eye disease has “significantly” impacted their lives
  • 56% say impaired vision due to thyroid eye disease makes it difficult to receive treatment on a regular basis.

Treatment has gotten more complicated during COVID-19.

  • 92% report that getting treatment during COVID-19 has become more difficult
  • 92% traveling to get treatment has become more difficult
  • 70% have skipped or missed appointments because of the coronavirus.

Home infusion could make treatment more accessible. 

  • 100% say home infusion of thyroid eye disease medication would be more convenient and less risky than travelling to a medical center for treatment 
  • 94% say it would reduce disruptions to care for thyroid eye disease
  • 96% say it would reduce the burden on their caregivers.

Respondents reported that thyroid eye disease made it difficult to see and walk, and that they often felt embarrassed to be in public.  Home infusion was clearly a welcome option, though respondents explained that they’d want precautions from those entering their homes, and they’d want them to be trained medical professionals.  They also emphasized the importance of a contingency plan for any side effects or treatment complications.

Home infusion has been available for years through Medicare, but only for a limited number of medications and diseases.  During COVID-19, the Centers for Medicare and Medicaid Services expanded the list of medications approved for home infusion, though infused treatment for thyroid eye disease is not yet included.

The Vision Health Advocacy Coalition’s two-phase study ran March-July 2020. It included telephone interviews with five thyroid eye disease patients followed by a national online survey of 50 people age 65 or older and living with thyroid eye disease.