Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate nutritional intake. Despite medical necessity, many insurers do NOT cover medical nutrition. As a result, people with certain rare diseases and their families are left to face the extraordinary cost of their treatment out-of-pocket – sometimes as much as $6,500 per month – but there is something you can do about it!
The Biden Administration currently is collecting ideas and stories for the White House Conference on Hunger, Nutrition, and Health in September. We urge you to submit your story and help explain why medical nutrition is important. Together, we can help raise awareness, make access to medical nutrition a national priority, and shape the policy agenda that will be developed by the White House and congressional leadership to address health equity.
The deadline to submit your story is Friday, July 15. Some helpful tips to keep in mind:
- Share your personal story about why medical foods are important to you.
- Explain how medical nutrition is essential to your treatment regimen, and what your life would be like without it.
- Include what you want others to know about relying on medical nutrition to survive or maintain your health.
- Request that medical nutrition access be included as a topic at the conference, with a discussion of laws that will address the issues, such as the Medical Nutrition Equity Act.
- Encourage your family, friends, neighbors, health providers and others in your network to participate and share their experiences with medical nutrition and how this issue has had an impact on them.
Click here to write and submit your story to the White House by Friday, July 15!
For more information, read NORD’s letter to the White House here and our blog covering how the formula shortage has highlighted the need for Congress to act on medical nutrition equity.
Sign up and join the Rare Action Network (RAN) to receive our policy updates and action alerts directly to your inbox.
