Barriers To Funding And Awareness about Sickle Cell Disease [Interview][Transcript]

Dr_Nina_Anderson_Sickle_Cell_Disease

Guest: Dr. Nina Anderson
Presenter: Neal Howard
Guest Bio: Dr. Nina Anderson is Executive Director of Tova Community Health, Inc. Their aim is to build capacity for a community-based health center dedicated to providing the highest quality of care for people who live with chronic medical conditions like Sickle Cell Disease. Dr. Anderson’s mission is to provide holistic care and services to her clients to achieve optimal health outcomes.

Segment overview: Dr, Nina Anderson discusses some of the ways that funding research and awareness of Sickle Cell is accomplished. Additionally, some of the barriers encountered in funding and awareness are touched on.


Transcription

Health Professional Radio

Neal Howard: Hello and welcome to Health Professional Radio today. I’m your host Neal Howard. Thank you so much for joining us, there are a lot of places that you could be on the internet and you chose to be with us and for that we’re truly grateful. There is a lot of talk in the main stream media about diseases and maladies and defects, cancer, HIV, COPD. There is so much that we hear about diseases and yet there is so little mentions about Sickle Cell Anemia. Our guest in studio today is Dr. Nina Anderson, president and CEO of Tova Community Health. She’s focused on research into sickle cell and she’s also an activist in an attempt to race awareness and funding for continued research of this disease. How are you doing today Dr. Anderson?
Dr. Nina Anderson: I’m great.
N: Thank you so much for returning. When we were here in another segment we talked a little bit about what sickle cell was, how it affected the body, we discussed some of the ways that the disease is identified in both infants and in adults. And we also discussed the effort to test all infants now at birth for this disease. Did you begin your medical career focused on sickle cell or is this something that you decided to specialize in way down the line in your career? What prompted you to become interested in Sickle Cell Anemia specifically?
A: So first I just wanted to let your audience know that my background is I am a nurse. And I received my bachelor’s and my Masters from University Delaware and I received my doctorate in nursing practice from Thomas Jefferson University in Philadelphia, Pennsylvania. But I started my career in 1998 and I was working for a children’s hospital that had a hematology-oncology ward and I noticed seeing the little babies and children coming in for fever admission and sickle pain crisis. And wanted to learn more about it, how do we take care of these babies and these families in the most compassionate manner. And it was something that sort of sparked my interest just working with the children and the families at the children’s hospital. And once I finished my Master’s Degree there was an opening for a physician at the Marian Anderson Comprehensive Sickle Cell Center which is located in Philadelphia. And at that time we were one of 10 centers that receive funding by the National Institute of Health and so I was so excited to have been offered the job and I was able to work at s center that took care of close to 500 children in the Tri-State area.
N: Now is your research aimed exclusively at childhood Sickle Cell or does your practice handle anyone who has the disease or who wants to find out more about the disease?
A: So my research looks at healthcare utilization and cost pf care for adults with Sickle Cell Anemia. One of the things that I found in my journey and in the work that I’m doing here in the state of Delaware is that children have a comprehensive Sickle Cell Center at a children’s hospital where they receive very comprehensive care, very family-centered care by a team of hematologists, social workers, nurse, psychologist and once they turn 18 to 21 their transitioned out of that pediatric program into the adult world. And unfortunately adult care for people living with Sickle Cell was so much different and unfortunately receive four times less funding for research in clinical care than do children who have sickle cell disease anemia. So my research looks at cost of care for adults living with sickle cell in the state of Delaware and how much was spent on their hospitalization and I looked at data from over three years and was able to show that just for 96 adults living with sickle cell, just alone the hospitalizations cost the state cost to three million dollars.
N: Three million dollars?
A: That is correct.
N: So basically like fighting as any other disease there is a lot of money that’s required to continue research and once you’re in the research you’re coming up with different ways newer and better ways to care for these patients and those innovations cost money. Now we see a lot of celebrities and athletes who have different diseases, maybe they have it or their auntie’s living with it or parent and they’re often asking for donations or offering their services as a celebrity to raise awareness. In the case of Sickle Cell, are there any prominent people out there athletes or celebrities who either live with the disease or are helping you with your efforts to raise awareness?
A: So I want to say that Junior Spates from the Steve Harvey Morning Show is the Sickle Cell Disease Association’s Ambassador.
N: Okay.
A: He has sickle cell disease anemia, T-boz from TLC, I don’t know if you remember that group has.
N: I sure do.
A: Also has sickle cell. But I I wanted to tell your audience that the oldest known person who actually died of complication of Sickle Cell disease was actually Egyptian pharaoh King Tut.
N: King Tut died of sickle cell.
A: Yeah, complications of sickle cell disease anemia.
N: I had no idea, never even considered it. And I guess being in that region of the world, he must have been or his parents must have as you said in another segment survives malaria, yeah?
A: Yeah. Uh huh.
N: Well that’s something new, learn something new each and every day. Now as the Ambassador stand and deliver, tour he was on that tour in Philadelphia and you were invited, yeah?
A: Yes. So a couple of people from my team media, myself were actually invited and we’re on the same senior speech and his news team for having that in Philadelphia Pennsylvania but I believe it was a worldwide tour invited us into his comedy show which was just well attended and was a fantastic event. But Junior Spates is really active and doing great things for the Sickle Cell Disease Association and also increasing awareness about the disease, but again we need more people who have the ability to bring it to the attention on a greater stage to do that. But unfortunately at this point we don’t have a bigger name than Junior but he’s done a fantastic job. We need more people, we need more help.
N: With a Junior Spates and as you mentioned T-boz of TLC offering some of their celebrity to raise funds for research, I think back to when AIDS first hit the scene or the Ebola virus or anything like that, your experience with the media I’m sure you’re learned that a certain spin or a certain twist on a story can make or break an awareness movement. What are some of the barriers that you’ve come across in trying to raise awareness for Sickle Cell?
A: I would say that the marketing, the cost of the marketing exposure is a huge barriers so that if you do have someone who’s interested in championing that, they would probably receive more financial benefits from working with another organizations like a cancer organization or diabetes or hypertension – one of those chronic diseases that has more money and fund attached to it and resources. Unfortunately for Sickle Cell, we just don’t have those type of resources available on a state wide basis or a national level to do that in such other chronic conditions or cancer, there so much more money in resources associated with that. And it’s very difficult to get people involved.
N: Now obviously people living with Sickle Cell being on the low end as far as the effects of lack of funding, I guess the next person up would be their healthcare provider. If you’re having so much trouble racing funds and awareness for continued research at that level, what about the physicians, the healthcare providers that are trying their best to help those that are living with Sickle Cell or to help those that want to find out how to take care of someone else? What are some of their barriers?
A: So the barriers are the training and the lack thereof even at a medical school level. Fortunately the fellows at where I used to train at Thomas Jefferson University and that I’m sure that sentiment is shared around the country is that there is not enough return on investment to subspecialize in taking care of people with Sickle Cell disease. And so they will go into other areas of blood cancers where they can make more money.
N: Okay.
A: And unfortunately if you’re coming out of medical school with you know $100,000 plus and that, you’re going to want to work in the area where you can make a decent living. But unfortunately to deal with this population being at least in the State of Delaware 90% of adults was Sickle Cell are publicly insured, the reimbursement rates are so low. It makes it very difficult for a health care provider to want to subspecialize in this area.
N: I guess Sickle Cell isn’t as glamorous as the others that you mentioned, the cancer or the Alzheimer’s or the things of that nature. When it comes to your experience, what do you feel is the number one best way to raise awareness, say just for one individual? What is that one thing that you would say or try to point out to tick a light in their brain to offer some help?
A: There so many things I would say but I would say from a strategic perspective I would say start by training nurses, social workers, internal medicine doctors, hematologists, oncologists on how to take care people living with Sickle Cell and especially adults, making sure that each patient has an individualized care plan. And that they receive personalized pain management when they go to the emergency room or to the hospital and to really discuss these implicit biases honestly that healthcare providers are the people on the front line that are taking care of them and an effort to really improve the care when it comes when them being treated for Sickle Cell pain crisis which most of the times that’s what brings at least adults to the hospital. So I would say put the money into training.
N: As we wrap up I’d like to ask how we can get in touch with you and get some answers to some of our questions?
A: So you can go to my website which is www.tovacommunityhealth.org. You can also reach me on Facebook, Twitter or you can also email me at [email protected]
N: You’ve been listening to Health Professional Radio. I’m your host Neal Howard. We’ve been speaking in studio today with returning guest Dr. Nina Anderson’s specializing in sickle cell anemia as an activist and also as a healthcare provider and as president and CEO of Tova Community Health Incorporated. We’ve been here talking about some of the barriers associated with racing funds and raising awareness for the continued research of this often very little talked about disease and also how we can contact Dr. Anderson get some answers to some of the questions that we may have about Sickle Cell. It’s been great talking with you again today Dr. Anderson.
A: Thank you, it’s great.
N: Thank you so much. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm. And you can subscribe to our podcast on iTunes.

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