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Larry Soler Transcript-2004

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DiabetesStation.com online chat with then head of JDRF governement relations Larry Soler.

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Larry Soler Transcript-2004

  1. 1. GREG (27.225) - Signed in... - 23-Sep-04 00:28 ZAHID (255.170) - Signed in... - 23-Sep-04 04:47 ZAHID (255.170) - Signed in... - 23-Sep-04 04:53 DENISE (2.206) - Signed in... - 23-Sep-04 06:15 MITCH (131.230) - Signed in... - 23-Sep-04 08:36 MELINDA (40.66) - Signed in... - 23-Sep-04 10:58 DENISE (2.158) - Signed in... - 23-Sep-04 11:00 CARL (240.224) - Signed in... - 23-Sep-04 11:11 CHERYL (255.184) - Signed in... - 23-Sep-04 11:31 CHERYL (255.184) - Hello - 23-Sep-04 11:31 CARL (240.224) - Hello, This is my first time on this web site. I have lived with diabetes for 30 1/2 yars. Until 02/03/04 - 23-Sep-04 11:35 SCOTT (33.135) - Signed in... - 23-Sep-04 12:05 SCOTT (33.135) - This is a test .... For anyone interested in pancreas transplantation you can get information at: PANCREAS TRANSPLANT INFORMATION - 23-Sep-04 12:05 LARRY SOLER (199.113) - Signed in... - 23-Sep-04 12:51
  2. 2. SCOTT STRUMELLO (246.70) - Signed in... - 23-Sep-04 12:56 CHERYL (255.184) - Signed in... - 23-Sep-04 12:57 SCOTT STRUMELLO (246.70) - Greetings Larry ... do you prefer us to call you Lawrence or Larry? - 23-Sep-04 12:57 LARRY SOLER (199.113) - Larry is fine. - 23-Sep-04 12:57 SCOTT STRUMELLO (246.70) - OK, then. Lawrence (Larry) A. Soler is Vice President, Government Relations, for the Juvenile Diabetes Research Foundation (JDRF). At JDRF, Mr. Soler focuses on diabetes research funding, policy issues including stem cell research, and oversees the foundation's active grassroots program, including events such as Children's Congress. In 2001, Mr. Soler created and chaired the Coalition for the Advancement of Medical Research, a coalition of 80 national organizations who support embryonic stem cell research. Prior to joining JDRF in 1998, he worked for eight years in federal relations positions at the Association of American Universities, focusing on education, health and immigration issues. He himself was diagnosed with Type 1 diabetes more than a decade ago. This special Diabetes Station program with Larry Soler as guest is expected to provide a timely discussion of stem cell research, transplant policy and NIH issues. - 23-Sep-04 12:59 SCOTT STRUMELLO (246.70) - Welcome, Larry ... and everyone else who is joining us (or will join us momentarily)!! - 23-Sep-04 13:00 LARRY SOLER (199.113) - Thanks for having me. I am delighted to join you. - 23-Sep-04 13:00 BARB (169.49) - Signed in... - 23-Sep-04 13:01 CHERYL (255.184) - Hi Larry, what an extensive job description! To you, what is the most important thing that you do at the JDRF? - 23-Sep-04 13:01
  3. 3. LARRY SOLER (199.113) - Cheryl, I help represent the interests of people with diabetes and their family members to Washington policymakers. JDRF has an active advocacy program, with highly motivated volunteers. We are able to make a real difference on research related issues affecting diabetes. - 23-Sep-04 13:02 SCOTT STRUMELLO (246.70) - A quick housekeeping issue for everyone before we begin the program, before asking a question, I'd like to suggest please hitting the refresh button to see if the question has already been asked or perhaps even been answered. You may also wish to adjust the scroll (which determines how many lines you can scroll back on) and the refresh rate appropriately. Generally, its easiest if you select the shortest amount of time for refresh, but depending on your connection speed, you may choose a less frequent refresh rate. - 23-Sep-04 13:04 CHERYL (255.184) - What research areas are taking top priority right now? - 23-Sep-04 13:04 LARRY SOLER (199.113) - This year we are working extensively on expanding the current federal stem cell policy, increasing funding for juvenile diabetes research, and increasing the number of pancreases that are available for use in islet transplants. - 23-Sep-04 13:05 BARB (169.49) - Larry, is your job to lobby the administration or the congress to increase funding for programs, say through the NIH are do you try to influence the types of research that will be approved for funding? - 23-Sep-04 13:05 LARRY SOLER (199.113) - We also just completed our Promise to Remember Me Campaign--more than 300 meetings were held with Members of Congress in their home districts, and we are planning our next JDRF Children's Congress right now. - 23-Sep-04 13:06 SCOTT STRUMELLO (246.70) - Based on your phone number, it appears that you are located in Washington, DC. Would you say that your role deals primarily with government relations at the Federal level, and if so, does JDRF have other staff who deal with individual state legislative initiatives? - 23-Sep-04 13:07 LARRY SOLER (199.113) - Barb, our objective is to get more funds for juvenile diabetes research and change policies to make conducting that research easier. We work with Members of Congress, the White House, Health and Human Services, and agencies like the National Institutes of Health
  4. 4. to do this. We don't get involved in which individual projects they should fund. - 23-Sep-04 13:07 BARB (169.49) - How are you trying to influence the number of available pancreata? Is this by influencing the donor rate or by providing funding for the transplant centers? - 23-Sep-04 13:07 LARRY SOLER (199.113) - Scott, as you may know, JDRF is a highly efficient organization. We have a very small group of staff in DC. However, we have a highly energetic network of volunteers who help us be an effective group in DC. We focus mostly on federal issues, but many of our volunteers have been effective at the state level. JDRF volunteers are leading an effort in CA to get $3 billion for embryonic stem cell research, for instance. - 23-Sep-04 13:10 SCOTT STRUMELLO (246.70) – That’s certainly true ... I will be Walking in the JDRF Walk in New York on Sunday! - 23-Sep-04 13:11 SANDY (169.49) - Signed in... - 23-Sep-04 13:12 SCOTT STRUMELLO (246.70) - According to a May 2004 article from The Wall Street Journal, JDRF "has become adept at unleashing an army of hard-to-resist lobbyists — made up of determined parents and their afflicted children — on researchers, politicians and potential donors." That certainly sounds like a compliment! - 23-Sep-04 13:13 JJ (255.184) - Signed in... - 23-Sep-04 13:13 LARRY SOLER (199.113) - Barb, we are doing so in a number of ways. First, one of our volunteers serves on the Board of Directors of UNOS, which oversees transplant policy in the US. She is actively helping educate UNOS about diabetes and related issues. Second, we are pushing legislation to help make islet cell transplants more available. Last year, we managed to get passed legislation that provides about $200 million to have Medicare cover islet transplants in a demonstration project. Also, this year, we are pushing the Pancreatic Islet Cell Transplantation Act of 2004 which will provide incentives for researchers to harvest pancreases-- today, many are left on the table and not recovered. I am pleased to report that this bill was passed unanimously last night by the Senate HELP committee! - 23-Sep-04 13:13
  5. 5. JJ (255.184) - How are you able to direct the efforts of so many volunteers (lobbyists!) for that type of impact? - 23-Sep-04 13:14 LARRY SOLER (199.113) - Scott, you've pointed to the real strength of JDRF--our determined volunteers who will not stop until every stone is overturned to find a cure. The passion is remarkable. I am sure you'll see that at the NYC walk, and I am pleased you'll be there. The Walk is our biggest fundraiser, and allows us to support nearly $100 million a year in research! - 23-Sep-04 13:15 LARRY SOLER (199.113) - JJ, it is a challenge. One thing is that we have a highly focused mission--we work on research issues to find a cure, and everyone at JDRF knows that. That allows us to focus our energy on a few things, rather than too many things. This allows us to really make an impact. We have grassroots organizers on staff and in our volunteer ranks who work ever day to keep us organized. - 23-Sep-04 13:17 SCOTT STRUMELLO (246.70) - Larry, your bio indicates you created and chaired the Coalition for the Advancement of Medical Research (CAMR). CAMR has assembled a database of supporters and is capable of targeting e-mail and reaching supporters readily. Are there any plans to do the same with JDRF? - 23-Sep-04 13:19 SANDY (169.49) - Other than stem cell research, are you involved in any other lobbying for beta cell replacement therapy such as xenotransplantation, islet cell regeneration or encapsulation of islets? - 23-Sep-04 13:20 LARRY SOLER (199.113) - Scott, CAMR was founded to pool resources of the many health groups that support embryonic stem cell research. It does a great job and I serve on their board. JDRF has similar capabilities. We maintain a database of volunteers in every state that have asked to be part of the advocacy program and we email them every two weeks or so with updates and alerts. You can sign up by visiting the government relations section of www.jdrf.org. - 23-Sep-04 13:21 LARRY SOLER (199.113) - Sandy, our lobbying efforts support each of those areas, but we generally focus at the 20,000 foot level. For instance, in 2002, JDRF was able to secure $750 million in supplemental funding for juvenile diabetes research at NIH. This funding is on top of regularly appropriated funds, and we are the only disease to get
  6. 6. research funds in this manner. This funding will be used for a wide variety of areas of research. - 23-Sep-04 13:23 BARB (169.49) - What centers are involved with the demonstration project for islet transplantation? Because this is medicare covered, will the red-tape that is involved with government funding cause problems with the results of this study? - 23-Sep-04 13:24 SCOTT STRUMELLO (246.70) - Unfortunately, current Presidential Policy regarding embryonic stem cell research seems to be limiting research. For example, labs funded with federal funds must mark equipment that is paid for by the federal government, and keep it separate from equipment funded privately. - 23-Sep-04 13:25 JJ (255.184) - Larry, do you see a turning in the tide regarding the embryonic stem cell debate? How far do we have to go yet? You work closely with the federal government … how likely is it that we can get federal funding for stem cell research (beyond the existing approved lines) within the next year? - 23-Sep-04 13:25 LARRY SOLER (199.113) - Barb, I am not certain that the centers have been selected yet, but it will likely include those that are most active in islet cell transplant. As for red tape, administering this project is not going to be easy; JDRF is trying to help bring NIH and Medicare together and helping them jointly administer this. I am very hopeful it will be a major success. - 23-Sep-04 13:27 LARRY SOLER (199.113) - Scott, we have and continue to work closely with the White House to administer President Bush's stem cell policy the best we can. However, we have concluded that the policy needs to be expanded to help move this research forward as quickly as possible (see our White Paper at www.jdrf.org). We have been educating Members of Congress and policymakers about this issue, and support is rising. I remain optimistic that an expansion of the policy will occur, sooner rather than later. - 23-Sep-04 13:29 BARB (169.49) - Do you find that your job of negotiating is affected by a particular political persuasion? Is there a difference working with the Democrats versus the Republicans? - 23-Sep-04 13:30 LARRY SOLER (199.113) - JJ, as for your question, I do see a turning of the tide. People understand now the central question--should we discard unused IVF eggs or donate
  7. 7. them to research. More than 70% of people now support using them for research, and that is growing. Everyone interested in this issue should contact their Members of Congress and the White House to tell them what they think. See the GR section of our website www.jdrf.org for more information, as well as www.camradvocacy.org. - 23-Sep-04 13:31 JJ (255.184) - Thanks, Larry, that's encouraging. A different question: Research & long-term treatments for diabetes in children seems abysmally slow. How can this be addressed and is it something that the JDRF is pushing? - 23-Sep-04 13:32 LARRY SOLER (199.113) - Barb, that is a good question. We run a very nonpartisan office, so we work well with GOP and Democratic members. Sometimes there are issues that tend to be supported by one party or another, and sometimes it is not so simple. Embryonic stem cell research, for instance, is an issue with a growing level of GOP support, and GOP lawmakers like Sen. Specter, Sen. Hatch, and Rep. Castle are among the biggest champions of the research. - 23-Sep-04 13:33 SANDY (169.49) - I've noticed that DiabetesPortal also has been urging people to vote for a cure! in the coming election, based on the administration’s policy towards stem cells. - 23-Sep-04 13:34 LARRY SOLER (199.113) - JJ, your starting to get a bit out of my field. Let me say, however, that the JDRF Board of Directors is made up of many parents of children with diabetes and they share your concern. Our research department is spending increased resources on clinical investigations to accomplish this task. We have more information about our research program at our website. - 23- Sep-04 13:35 LARRY SOLER (199.113) - Sandy, I am not sure about DiabetesPortal, but JDRF does not take positions on political candidates. You may want to visit www.camradvocacy.org as they are collecting positions of candidates for office and posting on their website. - 23-Sep-04 13:36 JJ (255.184) - Larry, what are the major stumbling blocks you encounter? - 23-Sep-04 13:37
  8. 8. SCOTT STRUMELLO (246.70) - Sandy, you may be referring to my recent editorial in Insulin Free Times. I'd also like to let everyone know that the current issue of Insulin-FreeTIMES (out now) has an editorial written by yours truly (me) on the subject of politics and diabetes (called "Vote for Curing Diabetes"), so if you haven't already done so, please check it out at: http://www.insulinfreetimes.com/04_summer/editorial.htm. My point was essentially that as people impacted by diabetes, we need to consider the views of the candidates and how it impacts the treatment and cure-related outlook. - 23-Sep-04 13:37 LARRY SOLER (199.113) - JJ, there are many stumbling blocks. First, changing policy in DC is always tough, no matter your cause. With funding issues, we are fighting against other good causes for funds during a deficit environment. With policy issues like stem cell, we have a well-organized opposition who objects to the research. Given that, I have been amazed at all of the things that JDRF has gotten accomplished over the past ten years. Our message is compelling and our messengers (volunteers) are very good at getting things done. - 23-Sep-04 13:40 SCOTT STRUMELLO (246.70) - Larry, JDRF's local volunteers played a critical role in getting New Jersey in January to pass a law to "promote" embryonic stem-cell research; other local chapters are pushing similar legislation in Illinois and New York. You also mentioned that activists in California (with JDRF's help) launched a November 2004 ballot proposition called the "California Stem Cell Research and Cures Initiative" (now known as Proposition 71). California propositions are heavily dependent on heavy TV advertising in the weeks leading up to the vote, and advertising costs are expected to be particularly high this year due in part to the national election. The Wall Street Journal reports that Peter Van Etten (JDRF's CEO) called this proposition an "institutional priority" for JDRF and the organization funded the cost needed to pay the professional firms that gathered most of the signatures needed to qualify for the ballot. JDRF has been a big supporter of this initiative, providing significant funding and organizational support. My question is simple: there are numerous state legislative initiatives, some helpful towards JDRF’s objectives and others are detrimental, yet there doesn't seem to be the same level of organization at the state level as there is on the Federal level. - 23-Sep-04 13:43 SANDY (169.49) - Does JDRF try to pick up the gauntlet for pancreas transplantation expenses for recipients that are not in need of a kidney. I work with many people that have been
  9. 9. debilitated by diabetes and cannot work or got insurance. A pancreas transplant would increase the quality of their life significantly but medicare does not pay for Pancreas transplants without the transplant of a kidney as well. Some medicaid does, it depends on the state. Does JDRF support causes for pancreas transplants or just islets? - 23-Sep-04 13:45 LARRY SOLER (199.113) - Scott, you raise an important issue, and one that our oversight committee is currently tackling. A few years ago, very few research issues were taking place at the state level, but that is no longer the case. We have asked our volunteers to take the lead, and as you note, they are doing a great job in many states. We need to study this trend and see how we can be optimally organized, with limited resources, to achieve our mission either at the state or federal level. - 23-Sep-04 13:47 JJ (255.184) - Overall, I understand that charitable donations have been down in recent years. Is that true for the JDRF – and have you rebounded? The need is increasing by the day, is the money increasing also? - 23-Sep-04 13:48 LARRY SOLER (199.113) - Sandy, from a policy perspective, we are trying to support emerging areas of research. We develop our priorities by working with our research department to see what are their priorities and then we discuss it with our oversight committee of volunteers and our Board of Directors. - 23-Sep-04 13:49 MARIANNE (255.184) - Signed in... - 23-Sep-04 13:51 LARRY SOLER (199.113) - JJ, following the downturn in the economy after September 11, JDRF--like most other charities--saw a decline in support. Fortunately, this past year we saw our revenues increase from about $140 million to about $160 million, and we have an agressive plan to raise $1 billion over the next five years. But, we need each of you and everyone who reads this to join us in this effort-- please walk at the walks and attend your local galas or give online at www.jdrf.org. - 23-Sep-04 13:51 MARIANNE (255.184) - sorry for being late. donating is important. but beyond money, what can a person with diabetes do to make a difference? - 23-Sep-04 13:52
  10. 10. SCOTT STRUMELLO (246.70) - Larry, how does someone get to be on JDRF's national government relations committee?? - 23- Sep-04 13:52 SCOTT STRUMELLO (246.70) - Welcome Marianne! - 23-Sep-04 13:53 LARRY SOLER (199.113) - Marianne, in addition to donating, please join our advocacy team by signing up at the GR section of the website at www.jdrf.org. Also, call your Members of Congress and the Administration about issues that may be important to you. - 23-Sep-04 13:54 MARIANNE (255.184) - hello - 23-Sep-04 13:54 SCOTT STRUMELLO (246.70) - There are only a few minutes left, any final questions for Larry? - 23-Sep-04 13:55 LARRY SOLER (199.113) - Scott, most of our GR Committee members have come up through the Chapters and have been active volunteers at the local level. This gives them important experience to learn how JDRF operates at the local level, which helps them help us sort our policy positions and priorities. - 23-Sep-04 13:55 DENISE (2.187) - Signed in... - 23-Sep-04 13:55 JJ (255.184) - Thanks for letting our voices be heard! - 23-Sep-04 13:56 SCOTT STRUMELLO (246.70) - I would just add to JJ's comment, don't forget to make your voice heard in November!! - 23-Sep-04 13:58 JJ (255.184) - Yes...vote for a cure! - 23-Sep-04 13:59 MARIANNE (255.184) - thanks for pointing us to some good resourses larry. it's good to have the reminder that we can all do something to advance the cause. - 23-Sep-04 14:01
  11. 11. SCOTT STRUMELLO (246.70) - Larry, I would sincerely like to thank you for joining us this afternoon. Your role is very important in keeping diabetes at the forefront of government policy, I appreciate your thoughtful response to our questions today. - 23-Sep-04 14:01 MARIANNE (255.184) - goodbye - 23-Sep-04 14:02 LARRY SOLER (199.113) - Thanks for having me. I enjoyed it. - 23-Sep-04 14:02 SCOTT STRUMELLO (246.70) - I hope you will be able to join us again someday! - 23-Sep-04 14:03 SCOTT STRUMELLO (246.70) - This session with Lawrence (Larry) A. Soler, Vice President of Government Relations for JDRF is now closed. Thank you everyone for joining us today! - 23-Sep-04 14:06

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