Blog

15 years ago, investigators around the world were still searching for effective therapies for histiocytic disorders. We were beginning to learn about the genetic mutations that are present with histio. We were uncovering that most histiocytic disorders are neoplastic and can be classified as a form of rare cancer. These discoveries and advancements opened up many doors. Ushering in improved care, better outcomes, FDA approval of treatments for histio, improved insurance coverage and recognition, and clinical guidelines for the treatment of adults with histiocytosis. 

While so much has been accomplished, one of the goals of the Histiocytosis Association is to ensure that the patient-family community has a forum to share their concerns, challenges, needs, and ideas.  A concern that has continued to come up in conversations and surveys, was of the lack of support around areas of transition, for example:

• Transitioning from pediatric care to adult care for those who still had active disease or permanent effects that require monitoring and ongoing care
• Transitioning for those who no longer had active disease, but needed or wanted to be monitored or followed
• Transition from one adult provider to another adult provider when life changes occur

Got Transition

The Histiocytosis Association has strategic plans to help improve these care gaps / care deserts. However, one solution we discovered was GotTransition.org. Got Transition® is the national resource center on health care transition (HCT). Its aim is to improve the transition from pediatric to adult health care using evidence-driven strategies for clinicians and other health care professionals; public health programs; payers and plans; youth and young adults; and parents and caregivers.

Upon discovering their resources, we felt it important to bring this information to the community. GotTransition’s team was eager to co-host a webinar with us on their resources and Family Toolkit. The information they shared will help patient and parents preparing for the transition period of pediatrics to adult care. You can view the webinar, here and find out more about GotTransition.org on their website. 

Bone Marrow Transplant Transitions

One of the more challenging parts of an already complicated disease, Hemophagocytic Lymphohistiocytosis (HLH), is finding a Bone Marrow Donor. Add on top of that going from a pediatric patient to an adult patient, and you have a very tough medical journey.

This past January, we collaborated with the Leukemia and Lymphoma Society (LLS) and NMDP to cover this topic. We were joined by a physician assistant and a few BMT patients, from various blood disorders and cancers, not just HLH. Our goal was to lay out a simpler path,
or even just a place to start.

In the webinar, our Histio Ambassador Nate spoke about his journey of misdiagnosis and then his current transition from pediatric to adult care. His transition started right after he had a bone marrow transplant and was in a very delicate 5-year window following it. Lack of an adult oncologist often left him waiting for long hours in the ER when experiencing complications. Since then, he has finished his degree in Health Services Management, which he had to delay multiple times amongst health scares and academic major changes.

To view the Bridging the Gap of Bone Marrow Transplant Care Webinar, click here.

We hope to expand on both the BMT and patient transition series with more specific guidance. Such as:

• How to utilize or obtain a primary care practitioner during transition as a BMT patient.
• Specific guidance for how to find an adult provider.
• The physician’s view of transitions, featuring practical lessons from the field.