While many people living with systemic mastocytosis (SM) receive excellent care close to home, others may need to travel out of state to visit specialists, receive advanced testing or access treatment options that are not available locally.
Planning ahead can make the experience less stressful and help ensure your care continues smoothly before, during and after your trip.
Understanding your insurance coverage
Knowing what your insurance will and won’t cover for out-of-state SM care before you book your trip can help you avoid unexpected bills.
If you have private health insurance, coverage for out-of-state care depends on your specific plan. Many Preferred Provider Organization (PPO) plans cover non-emergency care from providers in other states. However, it’s important to check if the provider you want to see is in-network, as out-of-network care can come with higher out-of-pocket costs. Other types of plans, such as Health Maintenance Organization (HMO) plans, are typically more restrictive and only cover providers in the specific state or area in which you signed up.
Contact the member services division of your insurance provider to find out exactly what your plan covers.
Medicaid only covers routine healthcare provided within the state where you are enrolled. Some state Medicaid programs may approve medically necessary out-of-state care if the required specialist or treatment is not available locally, but this often requires prior authorization. Emergency medical care is generally covered regardless of where it occurs.
Sign up here to get the latest news, perspectives, and information about SM sent directly to your inbox. Registration is free and only takes a minute.
Other costs to plan for
Travelling for medical care often involves expenses beyond the appointment itself. Depending on the distance, you may need to budget for a tank of gas, plane tickets, an overnight stay, meals, parking and time away from work.
Some hospitals have patient navigators or financial counselors who can explain expected costs and connect patients with resources that may help reduce out-of-pocket expenses.
Organizations like Mercy Medical Angels and the National Organization for Rare Disorders offer assistance programs that help cover the costs of traveling within the United States for medical care for those who otherwise can’t afford it. If you’re travelling for a clinical trial, ask the coordinator if they help with travel costs; some may reimburse you for part of your expenses.
Read SM Ambassador Tara Keith’s column about applying for travel aid: “Medical travel isn’t cheap. I just learned I don’t need to bear the burden alone“
Preparing for your trip
A little preparation can help your appointment run more smoothly and reduce the likelihood of unexpected problems.
Gather your medical records in advance and forward them to the specialist’s office. This gives your healthcare team time to review your history before your visit.
Schedule extra time between your arrival and appointment in case of travel delays. If you are travelling by air, keep all medications in your carry-on bag rather than checked luggage.
Finally, book your accommodations and transportation to and from the appointment (if necessary) before you arrive. This will help you avoid any last-minute stressors.
Follow-up care at home
After returning home, arrange follow-up with your local healthcare team to review any new recommendations.
Maintaining communication between your mastocytosis specialist and hometown providers can help ensure your treatment plan remains coordinated and that future care is as seamless as possible.
