Here at the VHL Alliance, it’s clear that the financial burden of von Hippel-Lindau continues to be a top priority for our community. The cost of traveling to and from medical appointments, navigating the complexities of insurance, and ensuring that you continue to receive high quality care without breaking the bank is an ongoing challenge for any individual with VHL.
However, there are a variety of resources available to VHL patients and caregivers that you may not be aware of! Here are four effective ways to keep costs low while ensuring high-quality care:
- Utilize the programs available through the National Institutes of Health (NIH)
The National Institutes of Health (NIH) has a variety of studies available to VHL patients. While eligibility varies from study to study, most include:
– Specific age requirements, with some studies starting for patients as young as 2 years old
– Eligibility often includes VHL symptoms or a positive germline report or both
– While the ability to visit NIH in person is a plus, it is not a requirement for all studies. Quality imaging can reduce the need to visit the NIH in person, and the cost of imaging is often covered by insurance.
The benefits of participating in a study with the NIH are broad:
Expertise: The NIH has a wealth of experience and research expertise in VHL and related conditions. Working with VHL specialists can confirm your current treatment plan or suggest alternative approaches that might be more effective or cost-efficient.
Comprehensive Review: Most studies include a thorough review of your medical history and current treatments, ensuring that you benefit from the latest research and best practices in VHL care.
No Additional Costs: As the studies are free, you avoid the costs associated with private consultations or additional VHL specialist visits. The NIH does not require or bill insurance. After your first visit to the NIH, you are also eligible for partial travel reimbursements.
To learn more about the clinical trials available to individuals with VHL please contact Lidenys O’Brien, RN, BSN at lidenys.o’[email protected].
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- Leverage Angel Flight NE for Free Treatment Transport
Traveling to VHL clinical care centers can be a significant expense, especially if you live far from these facilities. Angel Flight NE offers a solution by providing free air transportation for patients in need.
Cost Savings: Angel Flight NE offers complimentary flights to and from medical appointments, eliminating airfare costs. This can be particularly useful for VHL patients who are treated at a CCC that is located far away from their home address.
Convenience and Comfort: Angel Flights provide a more comfortable and less stressful travel experience compared to commercial flights or long car trips.
Access to Specialized Care: By removing the barrier of travel expenses, Angel Flight NE helps ensure that VHL patients can access the best possible care at our network of VHL clinical care centers, which can be crucial for managing the complexities of VHL.
To arrange flights, you can apply directly through Angel Flight NE’s website or contact their office to discuss your needs and schedule. Their primary service area covers 9 states: Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont. Additionally, they can serve patients nationwide and internationally through our partnership with other air charities and airlines.
- Access the Free Resources available at the EveryLife Foundation for Rare Diseases
The EveryLife Foundation has a variety of high quality resources & webinars geared towards the young adults with Rare Diseases:
Healthcare Guide for Young Adults: This webinar offers practical advice and tips for navigating the healthcare system, including understanding health insurance, managing medical appointments, and advocating for oneself in medical settings.
Insurance Resources: EveryLife has tools and info on managing healthcare costs, finding financial assistance programs, navigating insurance coverage, and understanding different types of financial support available for those with rare diseases.
Care Navigation Resources: Preparing for an upcoming appointment or curious about pivoting to another healthcare provider? This page can help!
- Explore The Free Resources on the VHL Alliance Website
The VHL Alliance provides a wealth of free resources designed to support patients and their families. These resources can help you manage your care more effectively and reduce costs:
VHL Handbook: The VHL Handbook offers comprehensive information about VHL, including its symptoms, treatments, and management strategies. This resource helps patients and caregivers understand the disease better and make informed decisions about their care.
Active Surveillance Guidelines: These guidelines outline best practices for monitoring VHL-related tumors and conditions. By following these guidelines, you can ensure that you are receiving the appropriate screenings and interventions at the right times, potentially preventing more costly and invasive procedures later.
Guide to Navigating Insurance with VHL: This guide provides practical advice on how to work with your insurance provider to get the coverage you need. It includes tips on handling claims, understanding your benefits, and appealing denials, which can help you manage out-of-pocket expenses more effectively.
Additional Resources: The VHL Alliance website also offers various other tools and support materials, including educational videos, patient stories, access to monthly support calls, and more! Click here to learn about upcoming events.
Conclusion
By taking advantage of the programs at the National Institutes of Health (NIH), utilizing Angel Flight NE for free transportation, and leveraging the free resources available via the EveryLife Foundation and the VHL Alliance, you can reduce the financial burden of managing VHL. These strategies not only help minimize costs but also help to ensure that you receive high-quality, informed care tailored to your needs.
Remember to stay proactive and reach out to these resources early in your care journey to maximize their benefits. With these tools at your disposal, you can navigate the complexities of VHL care more effectively and focus on your overall well-being.
As always, don’t hesitate to reach out directly to the VHL Alliance team if you need individualized assistance. We are here to help!