TESTIMONY
Ginger Davis on Improving Care for Sickle Cell Disease in Adults
2:23:40
·
135 sec
Ginger Davis addresses the need for improved care and continuity for adults with sickle cell disease.
- Davis highlights the lack of continuity of care for those transitioning from pediatric to adult programs, leading to deaths among young adults aged 19 to 35.
- She points out that healthcare providers are often poorly educated about sickle cell disease, and misconceptions lead to inadequate treatment.
- The testimony includes a call to adopt the American Society of Hematology's clinical guidelines across healthcare institutions to ensure better care.
- Davis emphasizes the necessity for broader education among healthcare providers through initiatives like Project Echo to address the care gap effectively.
Ginger Davis
2:23:40
Good afternoon, everyone.
2:23:41
Good afternoon to chair in our season to chair showman and all of the council members.
2:23:48
This has actually been a really great meeting to be able to hear all this information and to hear what doctor Kat's is saying about the changes and the improvements that are being made within HHC.
2:24:01
And I also want to echo with to your nurse he said about it being way overdue to provide quality care and continuity care for sickle cell disease, particularly in adult medicine.
2:24:16
We are losing our young people who age out of pediatrics.
2:24:21
And not all of the hospitals have adult programs.
2:24:25
And it is very painful to be seeing our young people between the ages of nineteen and 35 dying because they don't have continuity of care.
2:24:35
And the biggest problem is that health care providers aren't properly educated about sickle cell.
2:24:43
I think doctors know more about the stigma and consider adults with sickle cell disease to be drug seekers and drug addicts rather than to deal with the emergent issue that they are being faced with at the time.
2:24:57
And, you know, we have things like Project Echo with both CBO to provide education, which Doctor.
2:25:04
Katz is aware of.
2:25:06
Through Jacoby Hospital, our n stigma echo, and also John Hopkins, who were part of their network, has a provider to provide an echo in we go on these things, the doctors who show up or the doctors who are already caring for the population.
2:25:22
We need internists and specialists from other disciplines to come onto these provider echo education programs so they can begin to learn more.
2:25:32
And particularly, we would like to see that the American Society of Hematology's guideline clinical guidelines for sickle cell be adopted across HHC.
2:25:44
To give proper care for this population.
2:25:46
Thank you for this opportunity to just speak.
2:25:50
And Doctor.
2:25:51
Katz, I look forward to meeting with you one day to have further this conversation.