Young adults and Gaucher: Moving to adult specialty care
Gaucher disease is a genetic metabolic disorder that often requires lifelong care. As you get older, moving from pediatric to adult healthcare is an important milestone.
Planning early makes the process feel less overwhelming and helps ensure your care continues without interruption during the transition to adult care for Gaucher disease.
When to start the transition process
Transitioning to adult care takes time, especially when living with a chronic condition like Gaucher disease. While many pediatric providers have an age limit for their practice, it helps to begin preparing well before it is time to switch doctors.
The years leading up to the transition give you an opportunity to learn more about your condition, treatments, and medical history while gradually taking a more active role in your healthcare. This may include practicing how to communicate with your care team, schedule appointments, manage medications, and understand your treatment plan.
If you’re caring for someone with Gaucher disease who may continue to need support making medical decisions, this is also a good time to discuss their future needs with them and their healthcare team.
Everyone’s transition looks a little different. The right time to take on more responsibility depends on your maturity, diagnosis, and medical needs.
However, experts generally recommend beginning preparations by age 16. Some hospitals and clinics offer transition programs or coordinators who help young adults move from pediatric to adult care. You can ask your healthcare provider whether these resources are available in your area.
Finding an adult Gaucher specialist
Finding a healthcare provider with experience treating a rare condition like Gaucher disease takes some advance planning. As you prepare for the pediatric-to-adult care transition, or for other life changes like starting college or moving for a new job, talk with your current healthcare team about the care you will need in the future. They can often recommend adult specialists in your new area.
The National Gaucher Foundation also maintains a directory of treatment centers across the United States, making it easier to find an adult Gaucher specialist.
Changing doctors can feel stressful, especially if you’ve seen the same provider for many years. Before making the switch, ask your current healthcare team for a summary of your medical history, current medications, and treatment records to share with your new providers. Having this information readily available helps keep your care moving forward without unnecessary delays.
Managing infusion schedules and pharmacy orders
Many young adults with Gaucher disease find that managing treatments independently is one of the biggest challenges of transitioning to adult care. Staying on schedule with your infusions and medications is essential for managing the disease and helping prevent complications.
As you prepare for the transition, consider gradually taking responsibility for:
- scheduling infusion appointments
- requesting prescription refills
- communicating with your specialty pharmacy
- tracking your treatment schedule
You might find it helpful to use a paper planner, calendar app, or electronic reminders to stay organized. Finding a system that works for you before transitioning to adult care helps make managing your Gaucher care less stressful.
Navigating health insurance as a young adult
Because Gaucher disease treatments can be expensive, planning early for changes to your health coverage helps prevent delays or interruptions in your treatment.
If you live in the United States, you may be able to get health insurance through:
- an employer-sponsored health plan
- the federal Health Insurance Marketplace or your state’s marketplace
- Medicare or Medicaid, if you qualify
As you compare plans, consider:
- whether your healthcare providers are in network
- whether your medications are covered
- how much you’ll pay out of pocket
Choosing health insurance can feel complicated, so don’t hesitate to ask for help. Your healthcare provider’s office may have an insurance coordinator, and your college or employer may offer an insurance navigator. If you’re purchasing coverage through the marketplace or a government program, an assister or licensed insurance broker can explain your options.
Because Gaucher disease treatments are highly specialized, coverage varies among insurance plans, and out-of-pocket costs can remain high even with insurance.
Fortunately, financial assistance programs are available. Some pharmaceutical companies offer patient support and copay assistance programs for Gaucher disease treatments, while nonprofit organizations may help cover treatment-related expenses.
If you’re having difficulty affording your medication, talk with your healthcare team or pharmacist about financial assistance programs or other resources that can help.
Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
