Removing Obstacles to State-of-the-Art Treatment in Sickle Cell
More Programs and Publications Featuring Dr. Seethal Jacob
In this program:
How can sickle cell patients and their loved ones help remove obstacles to state-of-the-art care? Watch as expert Dr. Seethal Jacob shares ways to advocate on behalf of sickle cell patients and to continue expansion of treatment access.
Transcript
Leo Hesse:
Would not be able to perhaps access some of the treatments that you discussed about today. Now, for those patients who want to go that extra step to support themselves and their families, how can they ensure that they have access to state-of-the-art treatment. What could they do? Who do they need to speak to? What kind of research can they do to really seek, seek this treatment?
Dr. Seethal Jacob:
Absolutely, that's a great question, and I think it's something that many of us are trying to help advocate for as well. I think there's no better advocate for sickle cell disease than someone who's living with it, or someone that's caring for someone living with it, and so to talk to your government officials, talk to your local hospital systems, talk to your general practitioners and your community-based organizations if you are lucky enough to have a sickle cell community organization near you. Talk to the national organizations. Here in the U.S., we have the Sickle Cell Disease Association of America. We have the American Society of Hematology and many others that are trying to advocate for individuals living with the disease, but the more and more that we advocate to our government officials throughout the world, the more likely we are to expand availability of these treatments to everyone. We've seen those steps happen in the last five years, it was long overdue, but we need more. It's not enough. And so advocating to those around you to help raise awareness, to educate them about what it's like to live with this disease or care for someone with it, and why you deserve those treatments.
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