Last week, we began featuring part I of a two-part interview with DebRA of America executive director Brett Kopelan, who recently chatted with EB Resource as the organization was undergoing a relocation of its main NYC office. In part I, he shared how he was first introduced to the organization as an EB parent. In the conclusion of our interview, the executive director discusses specifically some initiatives his organization is currently working on to help raise awareness about the disorder.
EB Resource (EBR): What is DebRA of America’s main focus?
Brett Kopelan (Brett): Well our main focus is to fund the research that will eventually find a cure or treatment for this disease. I like to say that we are dedicated to easing and eventually eradicating the inherent daily stress of living with EB. But, what separates us from the other organizations is while we support that early-stage research, we are the only organization that has programs and services for the person with EB, the families and the caregivers. For instance, through our Wound Care Clearing House we give out free bandages to people who don’t have insurance coverage or have exhausted their coverage. We have a family crisis fund that helps offset the incredibly expensive cost of the disorder. People can apply for a financial grant to help with doctor and prescription co-pays, medical equipment or anything related to the care of an EB person. We’ve got our Patient Care Conference that runs every other year and that gives families the opportunities to not only socialize with each other but also meet and listen to the experts in clinical care and get updates on the status of research. We don’t charge any money for people to come and each year, more and more people do. Because of EB’s burden of care financially, in many cases this conference becomes the family vacation. And what’s really important is that people can be themselves without having to explain anything. Believe me, that is a relief. Not having to explain the open wounds or say ‘no, she wasn’t burnt in a fire’ is nice for a change. Anyway, there’s our New Family Advocate program where we send a box of supplies and important information and an experienced caregiver to train parents in the care of the new infant and on the use of the supplies. We also recently launched the Smile Fund. It’s a wish-granting program to fulfill small wishes for someone with EB on a monthly basis to bring a smile to their face, whether it’s an iPad or concert tickets. And as the need arises, we’ll keep developing new programs. For what’s considered a smaller organization, we provide a lot of services that are very practical and proactive, and probably our most used program is our nurse educator. People can call or email her and she’ll respond to answer their questions. We’ll be expanding that program soon.
Strategically, we have to bring a larger audience into the EB community and we’re going to do that by buying advertising space and start showing people what this disorder is. If our metrics are right, and we’ve been very conservative in this regard, it is our hope that we might be able to get 25,000 new active donors through advertising. It’s important to go in this direction for so many reasons, not just from a revenue side. The awareness quotient is incredibly important. For instance, last year, there were actually questions about EB on the medical boards, which was a huge thing because all of a sudden you may attract a greater number of younger researchers and clinicians who will gain an interest in it just by being exposed to it. That leads to more research, potential treatments and different ways of doing care. So it’s not just about raising more money.
EBR: Many of us in the EB community hear about multiple EB-focused organizations out there, all operating independently to serve the community and wonder if there is any collaboration taking place among these various organizations. Would you speak on that subject?
Brett: Some of the bigger organizations do collaborate in one way or another. I speak regularly with EBMRF and with JGSF to talk about various strategies and events. There are organizations that are solely focused on supporting early-stage research and other organizations that try to help the community and those with EB as best they can. There are a lot of other good organizations out there, but there can be pros and cons about having multiple organizations. The biggest difference with our organization from others is we have a scientific advisory board that helps us determine the best research to fund both nationally and internationally. We’re breaking up our scientific advisory board into a clinical sub-group , a basic science subgroup and an international subgroup to allow for the most up to date trends in care, in research projects and priorities. The clinical subgroup will allow us to be the only organization that can actually provide quality medical information to those with EB. With the rise of social media there is a plethora of care strategies being passed around that may not be safe. I want people to be able to point to DebRA as providing not only the programs and services but also information from the professionals that specialize in certain areas of care, for instance pain management.
As more people flock to social media, there are a greater number of smaller organizations popping up that really do want to help but without knowing it may actually prove detrimental. For instance, let’s say a new family goes to Facebook and sees 17 organizations. Where do they go? How do they know who to call first? Where will they get the right information and get into a system that gathers information that helps the overall cause? Some of the first questions the pharmaceutical companies or early-stage researchers always ask are ‘what is the prevalence of EB’ and ‘what is the incidence and burden of care,’ and the only way that we can accurately put this information together is by getting a great hold of the market. I think that’s where the problem of having multiple organizations comes in, that you end up losing some of the critical information that’s out there and that pharmaceutical and biotechnology companies are asking for. As way of example, if more than one organization distributes wound care supplies, we are unable to fully calculate the cost of having this disorder. DebRA uses the actual cost of care when advocating with the government about reimbursement rates. When a market becomes fragmented it leads to inefficiency. As another example, if all of these organizations ask the same group of people for money, while the overall amount of giving doesn’t change, the level of effect of that one dollar does. Giving thirty three cents to three different organzations is not as effective as giving one dollar to one. That same dollar can have a greater impact on the community. Mind you, I am not saying there should only be DebRA. I am saying that too many organizations will hurt the overall cause.
EBR: Are there any areas where we may be seeing other opportunities from possibly outlying influencers that could have a potential positive impact in helping the EB community in some way?
Brett: One of the other things I do is speak at events, and I am on the board of directors of the National Organization for Rare Disorders. I got on there to help give DebRA an avenue for advocacy in Washington D.C., and a direct line of communication. Because of my work at NORD, DebRA was able to get EB listed with the Social Security Administration’s compassionate allowance program. This allows people with a diagnosis of EB to get to the front of the line for an accelerated review when applying for SSI or SSDI. My next goal is to get Medicare and Medicaid waiver programs in place for those with this disorder. We are planning a day on the hill in D.C. in front of Senators and Congressional representatives to talk about the reimbursement issues of the bandages. NORD’s work was instrumental in getting language passed in recent legislation that allows for accelerated approval of orphan drugs and clinical trials. I have also worked with the FDA in setting up a patient review panel for upcoming clinical trials. I would say there are a lot of things going on that are going to have a huge impact on the EB community.
EBR: How has DebRA worked toward getting more media awareness for its efforts to support EB families and early-stage research?
Brett: There’s always media outreach and efforts to get media coverage around our events. But media will cover what it wants to cover, so it can be very difficult to predict. I have a director of communications and events who reaches out to media outlets like ABC and NBC. We do press releases and were recently picked up by over 350 media outlets. I think though the amount of coverage DebRA and EB get will increase once our advertising initiatives begin, because media picks up stories when there’s momentum and there is research momentum being built up. Once we’ll be able to effectively tell that story through advertising and through local events, I think more national media will pickup our story. The more important part of a PR campaign is to be able to do something with the results from that campaign. So, one of the things we’re doing is a complete system implementation here that will allow us to capture data, stories and media momentum and act on it. We’re building an infrastructure here at DebRA that is going to allow us to capitalize on a lot of the media work we’ve been doing.
EBR: Are there any campaigns or new partnerships you can share with our community?
Brett: From a strategic point of view, we are launching a new website soon that is going to be more image-intensive and video heavy. I am in conversations with some large advertising firms about taking DebRA on as a pro bono client as well. We’re in the final stages of developing the video for the thirty-second commercial. We’ve gotten a pretty famous singer to do voice-overs for it. We’re developing a much more robust direct mail program. We’ve been building infrastructure and stress testing it slowly to make sure that when we go out and allocate enough resources that will allow us to bring in new donors that we can capture and capitalize on all of it. It’s been a successful couple of years but I think with people like Leslie heading up our board of trustees and marshaling the resources there, it’s only going to become more successful.
I’ve been out there talking to some of the larger Fortune 500 companies, but it can be difficult to get a large national company behind you because causes like community betterment seems to be where some allocate their charitable giving allocations. With that said, the Rite Aid Foundation has given us some money. There’s a group of 40 Walmart stores putting together a local event for us, so the advertising component will allow corporate organizations to see that this is a disorder worth supporting and given the breadth of stuff that we do, they’ll say that DebRA is also an organization worth supporting, too.