How Can the Community Help Increase Sickle Cell Disease Research Funding?

 

More Programs and Publications Featuring Dr. Seethal Jacob

In this program:

How can the sickle cell disease community help increase research funding? Watch as expert Dr. Seethal Jacob shares advice to help improve research funding for sickle cell disease and how patients can help improve SCD care.

Transcript

Leo Hesse:

Now, we also know that there have been some noted disparities in sickle cell as it relates to funding and research, what can patients, physicians, people like myself who are not patients or physicians, what can we do to challenge this? How can we get more funding out there for research in treatment?

Dr. Seethal Jacob:

Absolutely, absolutely. Huge disparities related to research funding and research development of new therapies, again, as I mentioned, we've made some big steps over the last five years or so, but they're so much more left to do, and I think similar to my previous answer, is advocating to those same folks to your government officials to your hospital systems, working with community organizations to advocate at state and national levels for improved funding. Working with these larger sort of sickle cell organizations in the UK in the U.S., to advocate for increased funding, but also to express their own interest in participating in research studies, helping individuals who have the money to fund research understand that individuals with sickle cell disease do want to improve their care and they do want to participate in research that will help improve their care, and that is care focused on sickle cell patients specifically. When I talk with my patients, I talk a lot about how I want to make sure that they have opportunities to participate in research because this is how they can participate in hopefully improving the care that they and others receive over time.

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