Improving One’s Overall Quality of Life thru Tova Community Health Inc [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 talks about Tova Community Health, Inc. and how the organization works to continue research and awareness of Sickle Cell Disease.



Neal Howard: Hello you’re listening to Health Professional Radio today. I’m your host Neal Howard, thank you so much for joining us today. In studio today with us is returning guest Dr. Nina Anderson, specializing in Sickle Cell Anemia and also is the president and CEO of Tova Community Health Incorporated – an outreach communization that’s raising awareness, improving healthcare and also raising funds for continued research into Sickle Cell Anemia. How are you doing today Dr. Anderson?

Dr. Nina Anderson: I’m fantastic.

N: Thank you so much for returning. When we were here before, we talked a little bit about what prompted you to begin your research into Sickle Cell. We’ve talked about Tova community Health and your efforts with Tova in raising awareness and funds for research into Sickle Cell. I’d like to talk with you a little bit about what Sickle Cell is, how it affects the body? And then talk quite a bit about Tova Community Health’s mission to raising awareness and research into sickle cell.

A: So Sickle Cell disease is an inherited genetic blood disorder that a person is born with. People with Sickle Cell disease make blood cells that are shaped like a crescent or ‘C’ and they can be hard, rigid and unstable under certain conditions or stressors. So people that have Sickle Cell when there’s certain stresses on the body as I had mentioned like stress and effects on changes in weather, dehydration, those blood cell break down and clump together inside the blood vessels. And when there is a deprivation of oxygen and nutrients to the body to the organs, thru the blood and the tissues anywhere the blood flows that causes excruciating pain. And then also can cause damage to our major organs like our heart and our kidney. So this is a lifelong condition that people live with. And it’s the uncertain because you’d never know when you’re going to go in crisis or when you’re gonna get sick.

N: Now, I did mention that sickle cell is rarely talked about in the main stream media and you have an organization that is exclusively dedicated to raising awareness and funding for research into Sickle Cell. Could you talk a little bit how Tova Community Health was started, how did it come to be?

A: So I don’t want to take credit for all of this but lots of colleagues of mine had asked me to see if I could start a program in the state of Delaware for adults living with Sickle Cell because as I had shared with you, there’s so many resources especially … for children who have Sickle Cell Disease Anemia at the children’s hospital. But once they become adults, the care often times fragmented and we wanted to bridge that gap to continue to provide a high quality of care that adults need because they’re living longer lives. So when I was during my doctorate in nursing practice at Jefferson, I spent two years looking at healthcare utilization cost of care for adults with Sickle Cell, trying to make the case that if we were able to develop what I call a Sickle Cell Medical home where we provide care coordination services, continuity of care and what we call one-stop-shop direct patient care services setting that includes primary care and access to hydroxyurea therapy, we can reduce those cost of acute care admissions to the emergency room in the hospital because we’re following these patients on a regular routine basis. So it was a long strategy of mine, it took me five years to get to a point where I am today but again when you’re talking to stakeholders about Sickle Cell, you either need to provide a model of care that makes money or saves money to the care. So I focused on how we can improve access to high quality of care and reduce hospital readmission and emission for hospitalization.

N: In another segment, you mentioned the one thing that you would say to someone that would prompt them to offer help either in funding or in other ways raise awareness and that word in a nut shell was training. Do you as Tova Community Health offer training to other healthcare professionals as well training caregivers who maybe family members how to live with Sickle Cell?

A: Yes. One of the things I do is I feel very strongly about that and every year the new residents that come to the local community hospital where they have privileges at, I deal host segment on what the primary care provider should know about taking care of an adult with Sickle Cell. And also with this partnership that I’m involved with John Hopkins, we’re also developing tools for primary care providers and emergency room providers as well on how to take care of patients with Sickle Cell. I mean there are so many people that are really out there on the front line doing great work but I am just one of many that are really trying to increase the awareness about providing culturally and compassionate care to persons living with Sickle Cell and especially adults.

N: September has been named “Sickle Cell Awareness Month.” Just last month you were involved in the ninth annual sickle cell disease research educational symposium that was held inMiami Florida. Could you speak briefly about some of the head way that you made and some of the effect that the ninth annual sickle cell research and educational symposium has had on the community as far as what you can see?

A: I would say, it was very nice to connect with former colleagues of mine and to see them being directors of Sickle Cell comprehensive center, like Dr. Louis who works in a pediatric hospital in Chicago and some of the fellows that I worked with that are working with children with Sickle Cell. I would say that overall, there is excitement as far as Pfizer who is conducting a phase pre-clinical trials on a drug called Rivipansel that helps reduce sickling Sickle Cell crisis. And you can use this medicine in the emergency room but I think that there is also what I’ve seen in some of the conference sessions there’s such a been global family of healthcare providers that are really had shared with us interesting research studies and also the work they’re doing in other countries to gain information as well as to develop programs for people in such as here and Africa to India, to Brazil, to programs in Great Britain. So it seems like a really move into a really global conference. And so that we can share our resources not just here in United States but all over. I really see that there is lots of promise and more disease modifying therapies now with which pharmaceutical companies are actually get involved with that I’ve never seen in my lifetime of working with people with Sickle Cell.

N: The fairly new concept, just in the last few years of crowding everything as far as crowding employment services or temporary services and what not. Have you been involved in any crowd funding in an effort to raise research capital?

A: No I have not. And I have not been approached about that, I would be very interested in learning more about that because I really believe we have to pull our resources together especially when you’re working with Sickle Cell where it doesn’t get it the nearly the funding as other chronic conditions and be able to in a more egalitarian approach be able to make sure that resources are adequated appropriately so people like me who are clinicians and researchers and also bench science, basic science researchers can work together so that everybody benefits from this and not just investors or people that sort of make the decisions on where funding and how funding gets how allocate, so there would be more people at the table and I think that would be fantastic.

N: I mentioned that September was deemed Sickle Cell Awareness Month. Does Tova Community Health have any plans to take advantage of that with any activities or anything like that during the month of September?

A: Yeah, so excitingly we’re hosting our 4th annual “James Faucett III Sickle Cell Awareness 5K 1 Walk” which is gonna held Saturday September the 5th which is Labor Day weekend at Brandywine Park which is at Wilmington Delaware so we’re definitely looking for sponsors for that. But one thing that I think it’s very important that I’ve been able to God willingly is the “do not turn anyone away” so we ask people to make a contribution to support our event. But we want as many people at the event so that we can really just increase the awareness in our community and bring families and communities together.

N: Now you all heard that, mark your calendar now for September the 5th it’s gonna be a special Labor Day there in Wilmington. Now as we wrap up I’d like to ask you how can we get in touch with you to make a donation? Is there any maybe a “go fund me campaign” or anything like that where people can offer their help in your efforts to raise awareness and research dollars?

A: So yes we do have a “go fund me account” which is gofundme.com/tovacares. You can also reach me on Twitter, Facebook or you can just go to my website which is www.tovacommunityhealth.org.

N: Thank you so much. It’s been great talking with you today Dr. Anderson.

A: Thank you for having me.

N: Thank you. You’ve been listening to Health Professional Radio, I’m your host Neal Howard. We’ve been talking with Dr. Nina Anderson’s in studio today about some of the barriers in raising funds, talking about some of the events that Tova Community Health Incorporated have been involved in in an effort to raise that awareness. And also talking about how we as listeners and those interested in learning more about Sickle Cell or in offering services or donations can do so. Transcripts and audio of this program can be found at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe to our podcast on iTunes.