The document contains a transcript of an online discussion between Larry Soler, Vice President of Government Relations at the Juvenile Diabetes Research Foundation (JDRF), and several participants. Soler discusses JDRF's advocacy efforts and priorities, which include expanding stem cell research policies, increasing funding for juvenile diabetes research, and increasing the availability of pancreases for islet cell transplants. He explains how JDRF utilizes volunteers and grassroots organizing to effectively lobby Congress and influence policy on issues related to diabetes research.

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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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