Fund Raising for Sickle Cell Disease-The Problem With Raising Funds [Interview][Transcript]

Dr_Nina_Anderson_Sickle_Cell_Disease_FundraisingGuest: 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: In this segment, Dr. Nina Anderson discusses the 5K Walk/Run held last September and the cost of organizing the race with donations. She also explains how do private organizations raise funds versus the ways in which corporate organizations raise funds.

Transcription

Health Professional Radio

Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, thank you for joining us today. Medical research where we try to find cures and develop vaccines for different diseases and what no – it’s not an inexpensive undertaking. Many diseases are portrayed in the media as something that requires an immediate call to action. We’re inundated with the information about certain diseases and there are other diseases where the media doesn’t cover them quite as much. This poses quite a problem when it comes to funding for research and development into cures and vaccines. Our guest in studio today is here to talk with us about some of the obstacles that are faced when one is trying to raise funds. Dr. Nina Anderson, Executive Director of Tova Community Health Incorporated and her aim is to build capacity for community based health center dedicated to providing the highest quality of care for people who live with chronic medical conditions such sickle cell disease. And her mission is basically provide a holistic care and services facility for clients where they can achieve optimal health outcomes. How are you doing today Dr. Anderson?

Dr. Nina Anderson: I’m fantastic, how are you?

N: I’m doing well. You were here before talking about sickle cell and some other diseases that you and Tova Community Health Incorporate were battling against. You’re here today to talk about another aspect of the research that you’re involved in – that being fund raising. As I stated, is no small financial endeavor to do research to try and find a cure to not only sickle cell, but many other diseases as well. And you’re here today to talk about some of the obstacles that make it difficult for funding to occur.

A: Yes. So my background is in public health and I look at populations and try to find ways to improve health outcomes. So I don’t do basic science research where I’m in that lab trying to find a cure or a new disease modifying therapy. But what I do is I look at data looking at cost of care and to find better ways and models of care to improve health outcomes, keeping patients out of the hospital, and trying to move them more into outpatient care community based care to improve their overall quality of life.

N: Okay. So now that you’ve made me understand exactly what you’re involved in and our listeners as well, even that portion of trying to improve the outcome of a medical procedure for all patients is costly in itself.

A: Yeah.

N: Even that’s costly just trying to find better ways of offering care not necessarily a cure.

A: Yes.

N: So is that aspect even more difficult to locate funding for than actual research into cures and vaccines?

A: I would say for sickle cell disease, because it’s considered an orphan disease. And that means than it impacts less than 200,000 people in the United States. For any investigator, it’s very difficult to find funding to. If they have prototype or they’re interested in developing a disease modifying therapy or finding a universal cure for sickle cell, trying to put your funds is very challenging. Another if you’re aware of the NIH has been reducing that amount of funding for research and development in general for all kinds of chronic and medical conditions so it’s more competitive to get a grant. And it’s much more difficult for investigators to find this partnership with pharmaceutical companies, academic institutions to do the work that they want to do to improve the quality of life for a specific patient population.

N: So basically any as you term an orphan disease, any orphan disease is going to be a disease where it’s determined that not enough people suffer from it in order to basically get funding. I guess it’s prioritized sort of disease triage as it were when comes to funding and basically even just paying attention to that disease into different media outlets. And those are the outlets that are going to raise awareness in the minds of those who would be funding the research, right?

A: Yes, that’s correct. I mean if you think about HIV or Hepatitis C, that affects the millions of people, you’re gonna have more support from pharmaceutical companies and industries because they’re large, there is a better return on investment than a disease that impacts less than 200,000 people. So they’re looking at the numbers and how they can maximize their profit margins from investing into a new treatment or a new disease modifying therapy.

N: Okay. So basically follow the money and there you’ll find the problem.

A: Yes.

N: Now you’ve been involved Tova. Yourself and your team at Tova Community Health Incorporated. Where is Tova located?

A: We’re in Wilmington Delaware, which is one of the smaller states in the United States. And that being said, our population for people living with sickle cell disease is smaller than some of the other bigger states like Pennsylvania and New York. We estimate about 700 to 720 adults and children live with sickle cell in our state of Delaware.

N: And that’s a relatively small number compared to as you say some of the other.

A: Uh huh.

N: Now are some of these other larger areas with a larger population of those suffering from sickle cell, are they finding any better funding or is it pretty much the same across the board no matter how large the population is if it’s determine that this disease is an orphan disease?

A: It’s pretty much across the board, across the state. And now even though I came from state of Pennsylvania with a population of people with sickle cell around was 7 to 8,000 people. We still have challenges in finding funding for our center and to be able to participate in clinical trials and to fund the comprehensive treatment centers. Now it doesn’t really have anything to do with individual states, it’s a national problem.

N: Now I was about to talk about some of the things that Tova Community Health Incorporated has been involved in to kind of work around the problems of finding funding. One of which a 5K Walk and Run that was held back in September. Even putting on a 5K Walk and Run, it doesn’t happen for free so you’re basically having to spend money in order to raise awareness and thereby raise money, is that correct?

A: Yes. It’s always a challenge and this is our 4th year of doing it to raise money from the private sector incorporations as well as the public sector. What’s very interested about our mission is and the population in which we serve is that we never turn anybody away regardless of their ability to pay. So that all puts another challenge to make sure that we get the numbers of people out to really increase the awareness of sickle cell. And people in the community to know the work that we’re doing at Tova Community Health. So it is a very much of a challenge for my team to try to put on even just the 5K Walk Run.

N: Now what is, just a ball part for you, when it comes to putting on a 5K Walk and Run in support of raising awareness and getting donations in the door for a cause such as sickle cell, what are we talking about as far as cost that comes out of the promoters’ pockets?

A: For between marketing, I mean using the raise management company to all of the amenities that you have at the event – we have to put up between $10,000 to $12,000 just to put on the event.

N: Wow. And normally once all is said and done and all the votes are in, are you breaking even or maybe is there a 1 or 2% gain as far as funding? Or is it normally a break even situation?

A: Well when I first started, on our first year our goal was to break even. And being in our 4th year now, we usually met an … we met at about $5,000. And that’s after all of the fees were paid to the park, and to the raise management company, the insurance, that we provide for each individual who participated. So it’s very labor intensive as you were saying but our goal again is just try to replenish the amount of money that we had the previous year and try to at least increase the amount we raised by 5 to 10% on which is very nominal compared to other bigger organizations. But again, we it’s very challenging to get sickle cell into larger media outlets and bigger companies and sponsors because we’re so small and we don’t have those capabilities at this point in time.

N: Now as we wrap up this segment Dr. Anderson, let some of our listeners who may be totally unaware of what goes on when it comes to fund raising. Many of which they’re at the four front of their specialty performing procedures and using new technologies and basically maybe oblivious to all that goes on just to get that piece of equipment or that new white paper into their hands to perform that procedure. How do private organizations raise funds versus the ways in which corporate organizations that have many more avenues to raise funds?

A: So what I can just say from some of the bigger non-profit organizations, there’s usually a few big corporate sponsors that help or I would say they’re title sponsors that help to very much provide a lot of the resources for the event. And also because sickle cell at least in the state of Delaware is one of the chronic diseases that you don’t know much about. You have to build that base of people and people in the community to get to know you and develop relationships. But people for them to have an interest in supporting what we do. So as I said, … other bigger organizations they have corporate sponsors that will help and support them and also their media outlets and their base of people that they can reach into as much different than mine. Because we don’t have the resources that hire a grant… or event coordinator. We have to sort of be a one-stop-shop.

N: Uh huh, right. So basically you’re raising awareness and then cultivating that trust, that relationship in order to peak interest thereby I guess loosening the first strings of those have the ability to fund such research.

A: That’s correct. I think moving forward as I we have shared last time, for crowd funding, for we be able to raise monetary contributions from a large group of people, is something that we were successful. And I think we raised about $2,500 just from our marketing through our website and our Facebook page and so that was very helpful. The other thing is just really making sure that we continue to thank all of our supporters because the average donation that was made to our organization for the race just $20 but at the end we raised $18,000. So there’s power in small contributions that people make. So it’s not necessary the large contributions from big corporations but small people giving small amounts of money and just constantly being very grateful for it. If it’s a $5 contribution or dollar contribution or $20, that does add up.

N: Absolutely. You’ve been listening to Health Professional Radio, I’m your host Neal Howard. We’ve been in studio today talking with Dr. Nina Anderson, Executive Director of Tova Community Health Incorporated in Wilmington, Delaware whose aim it is to build capacity for community based healthcare center dedicated to providing the highest quality of care for people who are living with chronic medical conditions such as sickle cell disease. And we’ve been here talking about some of the obstacles that arise when trying to raise funds for certain orphan diseases, those diseases that are deemed not to be suffered by enough people in order to fund them on such large levels such as a HIV or even several cancer researches. And now as Executive Director of Tova Community Health Dr. Anderson is here basically raising awareness for the lack of funding and the need for funding into sickle cell disease. It’s been great having you here with us today Dr. Anderson.

A: Thank you. Thanks for having me.

N: Thank you so much. Transcript 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.