Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community

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In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the rare disease community. 

Protecting Access to Necessary Medical Treatment During the Pandemic

Social distancing is critical for slowing the spread of the coronavirus. But, for many rare disease patients, social distancing has created barriers to obtaining critical ongoing medical care. 

Telemedicine and CTA

Now, more than ever, rare disease patients need to have the ability to see medical providers via telemedicine. Due to the specialized care rare disease patients require, often these patients travel across state lines to see their health care providers. However, in the midst of the COVID-19 pandemic, these patients are at higher risk for contracting the coronavirus if they were to leave their homes and enter hospitals and doctors offices for their medical care. In 20 states, health care provider licensure requirements were hindering access to telemedicine. NORD went into action and sent letters to governors in these states, and activated the Rare Action Network, urging the community to contact their governors on this issue as well. As of April 15th, 14 of these 20 states have since adjusted their state licensure requirements to enable out of state providers to see their patients via telemedicine. Click here to see if your state still needs to take action on this critical issue!

Home Infusion Coverage under Medicare

Typically, rare disease patients receive their infusion treatments in hospitals, health centers, and doctors’ offices. In the face of the COVID-19 pandemic, these patients are at risk if they leave the home to seek this care, and increasingly these locations are closed or not accepting non-COVID-19 patients. However, access to home infusion has been difficult because of limited coverage under Medicare. NORD has been actively encouraging Congress to provide greater access to infusion treatments within the home (see our letters to Representatives and Senators). 

Medication Refill Limits

For most rare disease patients, it is critical to have timely access to essential and life-saving medications. During the COVID-19 pandemic, the Centers for Disease Control and Prevention (CDC) has encouraged people who take medications to have extra supplies of their medications on hand. Yet some private and public health insurers have placed limits on refills. NORD joined 95 other patient organizations in calling on Congressional leaders to expand medication refill access during COVID-19. Congress listened and the recently enacted CARES Act allows Medicare beneficiaries to request up to a 90-day supply of prescription medications.

Ensuring Adequate and Affordable Coverage 

NORD has always worked to make sure rare disease patients have access to quality, affordable health care. NORD joined numerous patient advocacy groups in writing to state Governors, Members of Congress, Senators and the Administration urging these officials to, among other things:  

  • Expand access to Medicaid and private health insurance coverage by reducing barriers to Medicaid enrollment and allow Special Enrollment Periods within state exchanges and the federal exchange to enable those who are uninsured to secure health insurance coverage; 
  • Ensure continuity of care by offering premium assistance to those who have lost access to their employer-sponsored health insurance; 
  • Provide for free COVID-19 testing and treatment
  • Protect patients from “surprise billing” for unexpected health care costs should they need to seek treatment during this unprecedented time; and
  • Ensure that eligibility for the paid family and medical leave program include individuals at high risk for adverse complications from COVID-19 and working members of their households in order to help keep them healthy. To contact your Senators and Representative on this important issue, click here.

The NORD Policy Team is here for you. Please share any other concerns you have with respect to the COVID-19 pandemic by completing this form.