As you all know, President Obama lifted Bush’s longstanding restrictions on federal funding of human embryonic stem cell research yesterday — a huge breakthrough for all those who believe this avenue could produce unprecedented treatments for many incurable diseases. Like diabetes.
Among others, the Juvenile Diabetes Research Foundation (JDRF) has fought long and hard for this boost. Its staff and members are pretty much ecstatic. A small group including Larry Soler, the organization’s EVP of Government Relations, was personally on hand in the White House for the signing ceremony Monday. Larry was kind enough to take a few moments that afternoon to share his insights with us here at DiabetesMine, with a focus of course on the implications of this decision on Type 1 diabetes research:
DBMine) First off, Larry, what’s going through your mind today?
LS) It’s a great moment. I’ve been working on this for over 10 years. I first came to JDRF in 1998, and stem cells were discovered that year. So I’m just ecstatic that it finally happened, but there’s some sadness too that it’s taken so long and so many people were lost along the way.
DBMine) This is pretty emotionally charged…
LS) It’s too bad that it’s been so partisan. But stem cell research clearly has strong public and bi-partisan support now. In terms of public opinion, when we first started working on it, lots of people didn’t understand it. Now with a lot of information and education out there, public opinion is in around the 70% support range.
DBMine) What was it like actually being in the White House for this historic event?
LS) There were national TV crews lined up along the back, print reporters standing up all over, and cameras clicking everywhere.
To be there when the President says “politics will no longer play a role in science in my Administration”… It was a powerful moment for lot of people.
When the event ended, the President shook hands with everyone in the crowd. I was so excited, in particular because I was doing my first twitter…
DBMine) You must have been pretty nervous. I just have to tease about your tweet that you “shaked hands” with the president and “he said we would get diabetes solved.” What was that all about?
LS) I made sure to thank him on behalf of all the families effected by Type 1 diabetes. The daughter of Senator (Jeanne) Shaheen (D-NH) was also there, whose little girl has Type 1. Obama said something to the effect of, “we’re working on this so they won’t have to take shots anymore.” Something about “taking care of diabetes.”
He seemed very determined, very serious. He seemed to recognize the importance of this for so many people with diabetes, Parkinson’s, ALS, and other diseases.
Gosh, the last time there was an event addressing stem cell research in the White House it was the vetoing of it. This was just such a different atmosphere!
DBMine) What’s the first thing JDRF is going to do now?
LS) Well, I’m going to go out and celebrate. The whole team is! (chuckles)
Then of course we’re going to roll up our sleeves and get going. One of the first things we’ll do is work closely with the NIH (National Institutes of Health) on developing new guidelines for how the research can be conducted. Obama’s Executive Order sets a period of 120 days for the NIH to develop guidelines, which is just what we wanted: allowing science decisions to be made by the NIH, not the White House.
We’ll work closely with them to make sure the guidelines are appropriate — not too lenient and not too burdensome. They have to be updated from the previous guidelines set in 2000 to take into account the new types of technologies available now from the private sector. There’s also an opportunity for public involvement in setting these guidelines. They’ll make the draft available in the Federal Register and anyone can provide input within a certain timeframe, usually 30 to 60 days.
DBMine) Ethical guidelines…?
LS) In some part, yes. The ethical framework discussed revolves around patients providing embryos they are not planning to keep and that would otherwise be destroyed. We talk about “appropriate informed consent,” but how do you define that?
We also want to make sure that people are not being compensated, so there’s no financial inducement involved. The NIH will also set some parameters on what’s appropriate for federal funding.
DBMine) Will there still be lobbying to do as well?
LS) Yes, another thing we’ll be doing is quickly pushing for legislation on Capitol Hill to establish this executive order. That means making provisions that if Obama’s no longer in office in four years, this cannot be easily reversed. We’ll push for legislation in the House and Senate. We have a good chance to pass it; we clearly have the support to do it.
DBMine) Last year, JDRF funded some $2 million in human adult stem cell research, and $4.9 million in human embryonic stem cell research. How will those numbers be different this year?
LS) We don’t really know what’s going to happen with funding until the NIH begins to get applications to receive funding.
It’s hard to know… but historically we were investing only single-digit percentages of our budget in this research (probably about 2.5%). Part of the problem was that researchers haven’t flocked to field as much as we’d hoped they would. They weren’t enthusiastic about working with something so controversial, that looked like it wasn’t getting any backing or funding.
DBMine) Is there any particular researcher/ institution/ company that JDRF will be putting its money on first?
LS) We will not be pushing for any one particular institution or project to get funding, no. However, we’re about to enter a period where stem cell research is really going to take off. Our roll is to make sure researchers spend time on diabetes, and to try to get the best scientists possible to work on diabetes — to make that an attractive place to be.
DBMine) Will you be teaming up with the ADA on this?
LS) We have a very good relationship with ADA. We do lobby for legislation together where our priorities overlap. We try to recognize that they often have different priorities. Some things are higher on our list and vice-versa. It’s a little easier for JDRF because we’re a little more focused — our constituency is more focused. They have a much broader constituency, so they have many more issues to deal with.
We don’t actually need to be working in step on every single moment. We actually recognized that we can sometimes get more done by working on different things.
DBMine) So will other JDRF research projects, notably the Artificial Pancreas, still remain a high priority?
LS) Every year we review our priorities anew, but when it comes to the Artificial Pancreas project, that is a huge priority within the organization and that’s not changing. We’re very committed.
As you know, focusing on treatment is a new thing for us, but the response has been overwhelmingly positive. Like you, I have Type 1 diabetes and I wear a pump and a CGM system, with all the great benefits and frustrations. I think we’re on the verge of revolutionizing the care of diabetes, and I’m thrilled that JDRF is at the forefront.
One great thing about JDRF: when this organization puts its mind to something, it gets it done, whether it’s developing the artificial pancreas, supporting stem cell research, etc. Finding a cure has been our biggest challenge; it’s a work in progress. But I am 100% confident we’ll be successful in driving new technologies to revolutionize care. What we have now is good, but it’s not good enough…
DBMine) All right, so I actually got some serious hate mail after my Sunday post on this topic. What do you say to those who stand against embryonic stem cell research on moral grounds?
LS) I face this a lot. I have done debates. I have worked with top Bush aides who were on the other side of the argument. I just try to de-personalize it as much as I can.
DBMine) Is that the JDRF’s official position?
LS) This organization has had a clear position on stem cell research for 10 years. In 2001, JDRF led the efforts to stop Bush from banning stem cell research altogether. We understand people have legitimate different positions on this issue. And we respect that.
In my experience, the overwhelming number of people in the diabetes community are for it. But clearly some are against. And they have every right to have that opinion. If people are against it, we try to find ways to work with them on other efforts like the artificial pancreas. If they want to make a donation to JDRF and make sure it doesn’t go to stem cell research, we can do that.
We have a very representative board of directors — Democrats, Republicans, people of different religions, etc. And most charity groups that care about healthcare have a similar position to us.
In fact, JDRF’s been a lead driver lobbying for stem cell research for the last 10 years.
I was able to talk to most members of Congress who were there at the White House today. They shared the impact that JDRF has had in their home states. And basically they all said, “You guys are driving this issue and you should be so proud of what you’ve done!”
Thank you Larry, and the JDRF Team — for everything!