Expanded Telehealth Services Featured in Latest Pro-Tech NORD State Evaluation
The National Organization for Rare Disorders (NORD) has recently updated its State Report Card, making it more digitally accessible and user-friendly. Heidi Ross, the acting vice president of policy and regulatory affairs at NORD, described the initiative as a 'critical tool' for understanding key issues within the rare disease community.
The latest edition of the State Report Card focuses on nine policy issues affecting the rare disease community, including Medicaid financial eligibility, medical nutrition, newborn screening, prescription costs, rare disease advisory councils, step therapy, and telehealth.
The addition of telehealth as a policy issue grew out of its increased use by rare disease patients during the COVID-19 pandemic. A staff of five to seven people from the policy team at NORD work on the report card project, ensuring that the information presented is accurate and up-to-date.
According to NORD's data, around 92% of patients said telehealth was a positive experience, and 70% said they wanted telehealth as an option for the future. In 2020, 88% of people who were offered telehealth instead of an in-person visit accepted it.
The State Report Card includes a drop-down menu showing how every state measures up in each category. Users can print or save a PDF version of the State Report Card summary for each state. Some categories, including telehealth, are graded on a pass-fail basis; others, such as medical nutrition, are given letter grades.
The grading methodology can be found at the end of each category's webpage, and in a separate appendix on the left-hand side of the page. A state either passes or fails the telehealth portion of NORD's State Report Card based on its participation in the Interstate Medical Licensure Compact.
NORD's principles on telehealth, released in 2020, include equitable access to telehealth, preserving patient choice, transparency in privacy and cost-sharing, and data-driven decisions. NORD plans on adding more detail on the telehealth policy issues in the future.
The website is designed to be easily utilized by patients, caregivers, family, friends, and advocates. Ross stated that the website was made more visually friendly and interactive to adapt to the changing pandemic situation. Viewers can click on each policy issue and find a colored map that indicates which states are succeeding and which ones need improvement.
The Interstate Medical Licensure Compact includes states such as Arizona, Colorado, Illinois, Missouri, and Texas, while states like California, New York, and Florida are not members, according to the current NORD State Report Card. The State Report Card project began seven years ago with the goal of evaluating how well each state serves patients with rare diseases.
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