Navigating tuberous sclerosis complex (TSC) involves adopting a strategic healthcare approach. As medical providers often lack familiarity with TSC, it’s crucial to form a local healthcare team to serve as advocates throughout your TSC journey. To gain deeper insights, explore the sections below.

Medical access issues

Living with a rare disease is difficult and there will be challenging barriers throughout the journey. Challenges are commonly centered around limited local resources, structural barriers to access care, insurance coverage, out of pocket expenses, and pharmacy coverage.

It’s important to have a well-rounded understanding of how these can affect you so that you can be in a good position to prevent challenging situations from occurring or resolve them quickly.

Having a rare disease can place extreme financial pressure on families regardless of their overall income and access to private insurance or government insurance (e.g., Medicare, Medicaid, TriCare). Even with health insurance, out-of-pocket costs (e.g., deductibles, co-pays and medications) can result in financial stress. This stress is amplified for the millions of uninsured US citizens.

Unfortunately, it is impossible to create a one-size-fits-all (or even fits most!) guide to navigate medical access issues. These challenges tend to be situation specific. Nevertheless, if you are faced with an access barrier, the TSC Support Navigators can help discuss your situation and help determine potential resources and options.

Your healthcare team may have resources that they can make available to you upon request. For example:

  • Clinical case managers and social workers may help you identify needs that you might not anticipate, and may help you coordinate care between specialists, provide assistance with school- or job-related forms, and communicate with your insurance provider.
  • Some institutions may be able to provide help with travel or finding financial assistance for transportation to appointments.

If your healthcare team or their institution are unable to help you address those issues, TSC Support Navigators may be able to assist you. Additionally, TSC Support Navigators can help in other areas, including:

Starting a new treatment plan

Navigating a new treatment plan can elicit mixed emotions – on one hand, starting a new plan may seem daunting, while on the other, a change can provide hope and excitement.

Having transparent communication with your healthcare team will make a huge difference during this process. Be open, honest, and prepared with questions will ensure that your concerns are addressed. It’s not always what you ask, but how you ask the question, that will ensure you receive accurate and relevant information. To help in this process, a tip sheet on Medication and Testing can help with appropriate questions for your healthcare team. Additional information and resources can be found at the Epilepsy Foundation Toolbox.

Working with your healthcare team

You do not need to have all the answers or become an expert in TSC to navigate you/your loved one’s care. You can empower yourself by clearly advocating your understanding of TSC and what you need to better understand, risk and benefit of treatment, short- and long-term outlook and how to prepare and balancing insurer- or pharmacy-based requirements.

Unfortunately, not every situation is ideal, and stress can lead to strong emotions. During those times it is important to focus on the goal you need to accomplish. Be realistic given the situation and options available to help redirect and find a solution to the current problem. Always remain calm when situations have escalated to anger and frustration. Most institutions and clinics have patient advocates. If you do not feel comfortable or agree with a treatment plan, you can always request to speak to an advocate prior to leaving (this is even true if you are in the emergency department!).

Because TSC can affect many different organ systems, you might find yourself under the care of many different medical specialists. Most of these specialties are separated between adult and pediatric patients. Two medical specialties are crucial to helping you manage and coordinate all these specialists: your internist (adults) or pediatrician (children). These clinicians are specially trained to manage the overall health of an individual, including helping you connect with and get the most out of your relationships with specialists.

Choosing a healthcare provider

It is common for medical providers to be unfamiliar with TSC, including neurologists, pediatricians and primary care providers (PCPs). It is crucial to have a local healthcare team involved in your/your loved one’s care.

Finding a good fit is essential as these healthcare team members will be your experts and, along with you, your biggest advocates as you start your TSC journey. Connecting with a local or out-of-state TSC clinic to help guide clinical treatment options is appropriate. Click here to view TSC Clinics across the country.

If you do not have access to a local TSC clinic, you can also make an appointment with an adult or pediatric neurologist experienced in epilepsy. Many of our TSC experts can offer provider-to-provider recommendations, and our TSC Support Navigators can assist with this process.

Insurance coverage can also be a factor in ensuring you do not experience delayed intervention and care. It is important to consider if out-of-state healthcare is right for you. For those considering traveling across state lines, please go to the insurance barriers page in the TSC Navigator’s Medical Challenges section to learn more on how to proactively prevent issues from occurring.

Reviewed by Ashley Pounders, MSN, FNP-C, November 2023.

Thank you to our TSC Navigator supporters:

Northstar Sponsors

  • Jazz Pharmaceuticals 
  • UCB, Inspired by patients. Driven by science.

Cardinal Sponsors

  • Neurelis
  • Nobel Pharma

Directional Sponsor

  • Noema