Care Access

Access to Expert Care Can Be Limited for Rare Disease Patients

During the pandemic, federal and state lawmakers issued temporary waivers under a public health emergency to allow clinicians to practice medicine across state lines, including via telehealth. Now, with the rollback of the state public health emergency declarations, many patients have lost access to their out-of-state providers.

Patients also experience personal financial burdens surrounding access. This includes:

• medical costs and lost income in seeking care,
• travel requirements to visit expert providers outside of their geographic region
• caregiving costs to parents for their other children for visits

These costs can lead to expert care being cost-prohibitive.

How States Can Improve Access

The Interstate Medical Licensure Compact (IMLC) is a way states can increase patient access to expert care in person and via telemedicine, which greatly benefits those in underserved or rural communities, individuals attempting to reach expert care from a distance, and patients with complex medical conditions who are unable to travel.

IMLC is an agreement among participating states to streamline the licensing process for physicians. It offers a voluntary, expedited pathway to licensure for physicians who qualify by allowing them to apply for licensure in multiple states through a single application, reducing duplicative processes.

Coverage challenges also exist. Expert providers are often outside of insurance networks. In the case of those with secondary Medicaid coverage, providers may be in their primary insurance network but not covered by Medicaid. This challenge not only affects access to expert specialists but also includes ancillary services.

Limited access to specialty care and physical and financial constraints to travel long distances commonly contribute to delayed diagnoses and care for rare disease patients. The Interstate Medical Licensure Compact increases patient access to out-of-state providers via telehealth, limiting the burden to reach expert care.

What We’ve Done

State Policy Efforts

Interstate Medical Licensure Compact

44 states, D.C., and Guam have passed legislation to become members of the Interstate Medical Licensure Compact, and several state legislatures are considering passing similar legislation this year. Learn about your state’s membership status. The RARE Foundation is committed to supporting efforts by state legislators and advocates to encourage more states to join the compact.

Telehealth

Advancements in telehealth platforms are making it easier for providers to diagnose, monitor, and treat diseases, without requiring those patients to travel long distances or take extensive time away from their work and families. States can improve access to telehealth services by expanding insurance coverage within their state and providing exemptions to allow patients to visit out of state providers and specialists from home.

Federal Policy Efforts

When children enrolled in Medicaid or CHIP (Children’s Health Insurance Program) require access to medically necessary care that can only be provided by specialists who reside outside of the child’s state, there are often lengthy delays in screening and enrolling out-of-state physicians as eligible providers in the child’s home state’s Medicaid or CHIP program. The process varies by state and requires providers to spend significant time completing the requirements.

The Accelerating Kids’ Access to Care Act addresses this problem in a commonsense way that balances access to care with program integrity needs.

• The legislation established a screening pathway that children’s hospitals and related providers can utilize on a voluntary basis.
• If providers opt to use this pathway and are screened successfully, they can be enrolled in other state Medicaid programs if called upon to provide care to children.
• Eligible providers will be limited to those providing care for children or, in limited cases, to people over the age of 18 who are being treated for a condition that developed prior to age 18.

After many years of advocacy, the Accelerating Kids’ Access to Care Act passed in January 2026. The legislation removed unnecessary delays in access to care resulting from months of processing paperwork. Roughly half of children in the United States who rely on Medicaid programs now have more timely access to the care they need outside of their home state.

During the COVID-19 pandemic, many telehealth policies were created to make it easier for patients to receive the care they need without leaving their home. Congress recognized the impact these policies and have made sure to extend these telehealth capabilities while they work on legislation that will make larger, permanent changes to ensure that telehealth continues to improve access to care for members of the rare disease community.

Joseph’s Story

"The personal experience is more difficult at times than the medical – financial stress, parental stress over diagnosis, next steps, insurance, the physical toll and the amount of time spent travelling to appointments, and of course, the stress over the future."

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