1
INTEREST GROUP 1: "CAMR"
COALITION FOR THE ADVANCEMENT
OF MEDICAL RESEARCH
CAMR is an organization dedicated to advancing medical research in general, and stem
cell research in particular, CAMR is a coalition of many different organizations that
lobbies congress, and which organizes polls and data collection to gauge public opinion
on issues in medical research. You are asked to read five short editorials produced by
CAMR: (1) a set of "talking points" on stem cell research, (2) CAMR president Sean
Tipton's statement on the anniversary of the passage ofH.R. 810 in the House, (3) a press
release from CAMR concident with Tipton's statement, (4) a report of results from a poll
measuring public support for stem cell research, and (5) a press release urging passage of
H.R. 810. (This sounds like quite a lot, but some of these are only a page long.)
Your task is to prepare a brief statement to explain and justify CAMR's view on stem cell
research and on H.R. 810. You may frame your remarks as a presentation to the Senate to
explain and justify CAMR's position on this issue.
Here is the statement about the organization, taken from the CAMR website:
[http://demo.democracydata.com/capconnect71/camr/about_us.aspx]
on May 27 2006:
The Coalition for the Advancement of Medical Research was formed in 2001 to ensure
that the voices of patients, scientists, and physicians were heard in the debate over stem
cell research and the future of regenerative medicine. The Coalition currently has a broad
membership base of patient groups, universities, foundations and scientific societies
unified in support of the following mission:
Protecting and expanding opportunities
involving human embryonic stem cells
for federal funding of biomedical research
Why? Embryonic stem cells show tremendous promise, federal funding of the research
protects the public interest, and the majority of Americans support stem cell research.
Learn more about \vhv (AMR
~upports fundinQ of embryonic
stem cell research
Ensuring that somatic cell nuclear transfer (SCNT), also known as therapeutic
cloning, remains a legal and viable form of scientific research, and opposing any
effort that would allow reproductive cloning
Why? Nearly 100 million Americans suffer from cancer, Alzheimer's, diabetes,
Parkinson's, spinal cord injuries, heart disease, ALS, and other devastating conditions for
which treatments must still be found. SCNT could hold the key to ending these patients'
suffering.
2
CAMR READING 1: CAMR Talking Points on Stem Cell Research
URL:http://demo.democracydata.com/capconnect71/camr/resources/The
mbryonic _ Stem _ Cells.htmSCR [Accessed, 27 May 2006]
_Promise _oC E
The Promise of Embryonic Stem Cells
Embryonic Stem Cells Have Great Potential
The suffering of millions could end
•
•
•
•
•
•
These cells could be the "missing link" needed to cure some of the world's most
deadly diseases.
Scientists already have shown they can direct the development of human
embryonic cells into insulin-producing cells that might help cure juvenile
diabetes.
Up to 100 million Americans may benefit from this research.
Embryonic stem cells offer more promise than adult stem cells.
Most scientists believe and studies show that embryonic stem cells will likely be
more effective in curing diseases because they can grow and differentiate into any
of the body's cells and tissues and thus into different organs.
CAMR supports research involving both adult and embryonic stem cells.
Excess Fertilized Eggs Are Available For Research
A majority of couples want to help save lives
•
Stem cells come from excess fertilized eggs stored in freezers at in vitro fertility
(IVF) clinics.
•
•
There are tens of thousands of these fertilized eggs available for research.
Nearly half of infertile couples say they would like to see some good come from
their excess eggs.
Federal Funding of the Research Protects the Public Interest
Private funding means research without federal oversight
•
•
•
Without federal funding, the nation's top academic researchers at universities,
medical schools and teaching hospitals cannot join in the search for cures, which
means much slower progress.
Tax dollars keep the "public" in public interest. This research should not be
confined to the for-profit, commercial sector.
The government should be providing oversight of the work and ensuring that the
research complies with ethical guidelines.
3
State Legislative Initiatives
State governments are promoting safe-havens for stem cell and therapeutic cloning
research
•
•
•
•
•
•
CAMR supports state efforts to create safe-havens for critical medical research
such as stem cells and therapeutic cloning, but it is no substitute for a supportive
federal policy.
State legislation that is pro-stem cell and therapeutic cloning research helps attract
top scientists/researchers to pursue this field of study and increases research
activity.
Increased research activity helps bring us closer to scientific advances that could
lead to cures.
State legislation that encourages IVF clinics to inform patients of their option to
donate excess fertilized eggs for research helps increase the supply of material
available for research. This in turn helps increase the genetic diversity of new
stem cell lines that could be developed.
State governments that pass anti-stem cell and therapeutic cloning legislation,
such as Iowa, force researchers to flee to states like California and New Jersey,
which provide funding and positive research environments.
Broadly-worded state bans on all human cloning will only stop important research
and possible cures.
Public Opinion Strongly Favors Embryonic Stem Cell Research
The majority of Americans (regardless of religious or political affiliation) support
embryonic stem cell research
•
•
•
•
•
The American people want embryonic stem cell research to move forward.
Members of Congress from both sides of the political aisle support the research.
In May 2005, the House of Representatives passed HR 810, the Stem Cell
Research Enhancement Act. The bill is currently pending in the Senate.
Independent opinion surveys over the last three years consistently show strong
public support for embryonic stem cell research (USA Today, Gallup, Pew
Research Center, ABC News, CAMR, and others).
There is surprisingly strong backing among fundamentalist Christians, Catholics
and abortion opponents.
Hundreds of newspapers throughout the country have editorialized in favor of the
research.
Updated August 2005
4
CAMR READING 2:
!ittp://rclcascs.usnewswire.c()m/GetRclcasc.a~?id=6631
0 Accessed: 9 June 06
ST ATEMENT TO THE MEDIA: 24 May, 2006
The following statement may be attributed to Sean Tipton, president, Coalition for the
Advancement of Medical Research:
"Today is the one-year anniversary of House passage of the Stem Cell Research
Enhancement Act (H.R. 810), and still, there has been no action in the Senate. Many
things have happened in the past year, since the House passed the Stem Cell Research
Enhancement Act:
•
•
•
1,000 bills were introduced;
465 of them passed in the Senate; and
124 bills were presented to the President of the United States.
"However, while the Senate was considering those 1,000 bills, passing 465 of them, and
sending 124 to the White House:
•
•
•
•
1.4 million Americans were diagnosed with cancer;
60,000 Americans were diagnosed with Parkinson's;
11,000 Americans suffered spinal cord injuries; and
1.5 million adults were diagnosed with diabetes.
"And that's just the tip of the iceberg. Many millions more already-diagnosed Americans
continued to suffer from cancer, heart disease, Alzheimer's, Parkinson's, spinal cord
injuries, and other debilitating diseases and disorders that scientists and the medical
community believe can be better treated or cured through advances with embryonic stem
cell research.
"In fact, earlier this month, the Senate spent time debating medical malpractice and other
related legislation in a week they dubbed 'Health Week.' But, Senate Majority Leader
Frist (R-TN) refused to schedule a vote on H.R. 810 - the one bill that holds the promise
of a healthier America, thus reducing the cost of healthcare for Americans.
"Perhaps its time to remind Senate Majority Leader Frist of his own words, spoken last
July after H.R. 810 passed the House with strong bipartisan support, when he said, 'I
believe the President's policy should be modified. We should expand federal funding ...
The promise is powerful enough that I believe this research deserves our increased
energy and focus. Embryonic stem cell research must be supported.'
"Senator Frist's words gave hope to millions of Americans, as well as the science and
medical communities around the world. However, on this one-year anniversary ofH.R.
810 with no Senate action, those same millions who once hoped for better treatments and
cures now feel duped and are angrier than ever before.
5
"On behalf of CAMR, its members, and stem cell research advocates everywhere, I want
to remind Senator Frist that tens of millions of patients, their families, their caregivers, as
well as doctors and scientists have been counting on him to bring the Stem Cell Research
Enhancement Act to the Senate for a vote. As Senate Majority Leader, he is in a unique
and pivotal position to have the Senate act on H.R. 810, and we have been waiting for a
year for him to do so.
"As it does with other kinds of promising technological and medical research, CAMR
believes the federal government must fund human embryonic stem cell research. CAMR
calls on the Senate to vote for H.R. 810 with no amendments and no alternatives. We
believe this bill will pass, but if it is not scheduled for a vote, we not only risk the lives
and well-being of millions of Americans and their families, we also risk losing America's
leadership position in the fields of science and medicine."
6
CAMR READING 3:
http://www.stemcellfundin1!.oq?;/camr
ON ONE-YEAR ANNIVERSARY
CAMR GIVES PATIENTS
ncws.aspx?rid=052406A
OF SENATE INACTION
Accessed 9 June 06
ON H.R. 810,
A VOICE ON CAPITOL HILL
- Derick Lindsey, Jackie Christensen, Lisa Clare and Michelle Mundt share "a year in
the life" waitingfor better treatments and cures through embryonic stem cell research WASHINGTON, D.C., May 24, 2006 - To commemorate the one-year anniversary of
House passage of the Stem Cell Research Enhancement Act (RR. 810), the Coalition for
the Advancement of Medical Research (CAMR) hosted an event on Capitol Hill today to
give patients and their families an opportunity to talk about their experiences over the
past year - a year during which the Senate did not act on H.R. 810, despite promises from
Senate Majority Leader Frist that the legislation would see swift action in the Senate.
"According to recent research, nearly three-quarters of Americans support stem cell
research and want the Senate to vote on the Stem Cell Research Enhancement Act," said
CAMR president Sean Tipton. "It has been a year since the U.S. House of
Representatives showed strong bipartisan support in passing H.R. 810 and it's time for
Senate Majority Leader Frist to schedule this for a Senate vote now."
At today's event in Russell Park on Capitol Hill, Washington, D.C., mother Michelle
Mundt said, "Last year, 1 had two important reasons to support the passage of the Stem
Cell Research Enhancement Act -- my husband Tim and my 3-year old son Duncan, who
both have Type 1 diabetes. This year, 1have a third reason -- my 5-year old daughter
Caitlin was diagnosed with Type 1 diabetes. Unfortunately, diabetes hasn't taken a year
off while we waited for the Senate to act. Every year we delay in finding a cure for
diabetes, our family will endure another 3,000 insulin injections and another 7,000 finger
sticks. We can't afford to wait any longer. The Senate needs to act now to fulfill the
promise that stem cell research holds for my family and millions of other families like
ours."
Reading from a college application essay, Derick Lindsey said about his experience with
Stage 4 non-Hodgkin's lymphoma, "I became sick nearly all the time. 1 was sleeping all
the time, puking and running high fever. A simple-minded person would have thought
that nothing good could come from this. Shortly after starting chemo, my hair began to
fall out very rapidly, and 1 had thoughts like, 'no one will want to be friends with a bald
kid,' and 'no one will want to go to prom with a bald kid.' 1 had missed so much of my
life being in a hospital, and once again, I had to continue my life going to the hospital
every week and barely having time for school or friends for a year."
Minneapolis resident Jackie Christensen suffers from Parkinson's Disease. After having
risky Deep Brain Stimulation surgery to try to keep her Parkinson's symptoms at bay, she
said that the surgery "will mask my symptoms for an unknown period of time, improving
my quality of life, but it does nothing to slow the progression of the disease. It has not
7
been so beneficial to our finances: the expenses associated have already cost us about
$8,000. We are extremely blessed to have good insurance, because there is no way we'd
have been able to pay the $137,000 bill. Many others with Parkinson's are not so lucky.
They may be ineligible for the surgery because of other health issues, or simply unable to
afford it. If my disease can progress so much in a year and I can take the steps I must for
the sake of my life and my family, then why can't Senator Frist take the action he
promised almost a year ago and allow this bill to come to a vote?"
Lisa Clare, from Leesburg, VA spoke at the event about her daughter MacKenzie, a Girl
Scout who was paralyzed in a car accident in 2005, "When my husband and I heard that
our 10-year old daughter would never walk again we nearly fainted. However, we were
blessed with hope. One of MacKenzie's doctors told us to get her exercising
immediately ... that we needed to keep her body healthy because embryonic stem cell
research showed potential to repair the spinal cord. We have no doubt that someday
MacKenzie will walk down the aisle with her Daddy on her wedding day, have children
of her own, and be the veterinarian that she wants to be! Please Vote 'yes' on the Stem
Cell Research Enhancement Act with no amendments and no alternatives. We consider
this the only pro-research vote there is!"
Boston-area resident Chaz Southard was paralyzed from a neck fracture he sustained in
August 2002. Unable to come to the event due to current health problems, Chaz, a
quadriplegic, wrote in an email to CAMR president Sean Tipton, "This past year has been
hell for me and for my family. Not many people know that a very common complication
to paralysis is vulnerability to infection. The bacteria that have invaded my body this past
year have limited medical options for treatment. Any cut or burn on my body can become
life threatening within eight hours. I have been on intravenous antibiotics three times in
the past year and on another antibiotic that costs $1,200 for a ten-day cycle of
medication. Every day is full of pain and anxiety. My family has dedicated themselves to
keeping me alive until there is a cure. Every night I go to bed praying that our leaders
will one day stand behind the people who cannot stand for themselves. I ask you today to
please vote into law the Stem Cell Research Enhancement Act as it is written so that I
and millions of others who suffer from the scourge of paralysis may look to the future
with hope."
"As it does with other kinds of promising technological and medical research, CAMR
believes the federal government must fund human embryonic stem cell research," Tipton
added. "CAMR calls on the Senate to vote for H.R. 810 with no amendments and no
alternatives. We believe this bill will pass, but if it is not scheduled for a vote, we not
only risk the lives and well-being of millions of Americans and their families, we also
risk losing America's leadership position in the fields of science and medicine."
8
CAMR READING 4:
http://www.camradvocacv.on!./canu
ncws.aspx'?rid=0002 Accessed 8 June 06
For Immediate Release: Wednesday, July 13,2005
Coalition for the Advancement of Medical Research Says Passage of H.R. 810
Critical for Patients and Science
Alternative Means of Deriving Stem Cells from Embryos is Unproven And Could Delay
Or Set Back Benefits of Research
WASHINGTON, July 13 - Senate passage ofH.R. 810 would be the surest way to bring
the humanitarian benefits of stem cell research to millions of Americans suffering from
diseases such as Parkinson's, Alzheimer's, diabetes, cancer, heart disease and many other
serious illnesses, a non-profit coalition of 95 patient groups, medical organizations, and
academic medical centers said today.
Daniel Perry, President of the Coalition for the Advancement of Medical Research
(CAMR), attended a press conference with actor Michael J. Fox, Senators Orrin Hatch,
Arlen Specter, Tom Harkin, Ted Kennedy, Dianne Feinstein and Representatives Michael
Castle and Diana DeGette, calling on the Senate to pass H.R. 810.
"Legislation suggested by some as alternatives to the House-passed bill only delays
bringing hope to millions of Americans," Perry said. "We need a national lifting of the
cloud of politics that currently hangs over embryonic stem cell research. Senate passage
ofH.R. 810 would lift that cloud and ensure critical federally-funded research can
continue."
The legislation, passed 238-194 by the House of Representatives on May 24, would allow
federally-supported scientists to study additional stem cell lines, expand research among
America's top academic researchers and accelerate the cure and treatment of diseases that
affect up to 100 million Americans. H.R. 810 expands Federal research of additional stem
cell lines from voluntarily donated in vitro fertilization (IVF) embryos.
Opponents of H.R. 810 are promoting alternative means of deriving stem cell lines from
excess IVF embryos, but because the alternatives have yet to be proven they cannot be
considered substitutes for embryonic stem cells.
"Why would you want to bet on these kind of things today at the expense of embryonic
stem cell research, which we know works? The science behind these alternative methods
is uncertain and this point, and none of the methods has proven successful thus far,"
Perry said. "These approaches are a catch-all bag of speculation, unpublished science,
wishful thinking and philosophical pretzel-bending."
9
The Coalition for the Advancement of Medical Research (CAMR) is the nation's leading
pro-cures coalition. It is comprised of nationally-recognized patient organizations,
universities, scientific societies, andfoundations advocatingfor the advancement of
breakthrough research and technologies in regenerative medicine - including stem cell
research and somatic cell nuclear transfer - in order to cure disease and alleviate
sufferingfor individuals with life-threatening illnesses and disorders
10
CAMR READING 5:
http://www.camradvocacv.ol'g/camr
ncws.aspx'?rid=051606B
Accessed 9 June 06
NEARL Y THREE-QUARTERS OF AMERICA SUPPORTS
EMBRYONIC STEM CELL RESEARCH
New Poll Results Show Growth in Overwhelming Support for Embryonic Stem Cell
Research and Demand for Senate Vote; CAMR calls on the Senate to vote for H.R.
810 with no amendments and no alternatives
WASHINGTON, D.C.; May 16,2006 - The Coalition for the Advancement of Medical
Research (CAMR) announced today poll results revealing that nearly three-quarters of
Americans support embryonic stem cell research and want the Senate to vote on federal
funding for stem cell research.
When asked if they support embryonic stem cell research, seventy-two (72) percent of
respondents favor it, up from sixty-eight (68) percent in 2005. Only twenty-four (24)
percent opposed embryonic stem cell research, down from twenty-eight (28) percent a
year ago.
When asked given what they know about stem cell research, should the Senate vote on
H.R. 810, seventy (70) percent of those surveyed said "yes," while only eighteen (18)
percent said "no" and twelve (12) percent were unsure.
At an event on Capitol Hill today, CAMR representatives, as well as Senator Dianne
Feinstein (D-CA), Senator Tom Harkin (D-IA), Senator Orrin Hatch (R-UT), Senator
Edward Kennedy (D-MA), Senator Gordon Smith (R-OR) and Senator Arlen Specter (RPA) called on Senate Majority Leader Bill Frist (R-TN) to schedule a vote on The Stem
Cell Research Enhancement Act (H.R. 810).
"America is ready for the Senate to vote 'yea' on H.R. 810 and for the federal funding of
embryonic stem cell research," said Sean Tipton, president of CAMR. "Just as it does
with other kinds of promising technological and medical research, the federal government
must fund human embryonic stem cell research. Senate Majority Leader Frist needs to
understand that if this bill does not get scheduled for a vote, we not only risk the lives and
well-being of millions of Americans and their families, we also risk losing America's
leadership position in the fields of science and medicine," added Tipton.
On May 24,2005, the U.S. House of Representatives passed H.R. 810 -- The Stem Cell
Research Enhancement Act -- with strong, bipartisan support. If this bill passes the
Senate, this bill will override President Bush's August 9,2001 executive order limiting
federal funding of embryonic stem cell research. Thousands of scientists, including 80
Nobel laureates, recognize that current federal restrictions on stem cell research seriously
hamper research in the United States.
11
"We believe that this legislation will pass the Senate, just as it did in the House, with
strong bipartisan support," added Tipton. "We call on Senator Frist to schedule a vote on
this important legislation before the one-year anniversary of hours passage next week. If
you are one of the millions waiting for a cure or new treatment, a year is too long to wait
for action. We need a vote and we need it now."
The poll was conducted by the Opinion Research Corporation with a nationwide random
sample of 1,000 people the week of May 5, 2006, and carries a margin of error of +/- two
(3) percent. More information about the poll and its results can be found at
(Poll questions and data can be found on the following pages.)
Page 1
ORC STUDY #715189
CARAVAN
STEM CELL
MAY 5, 2006
Question VI
I'm going to read you a brief description of embryonic [em bree AH nik] stem cell research, and then get your reaction.
Embryonic stem cells are special
cells that can develop into every type of cell in the human body. The stem cells are extracted from embryonic cells produced in fertility clinics and
then frozen days after fertilization.
If a couple decides that the fertilized eggs are no longer needed, they can choose to donate the embryos for
research or the clinic will throw the embryos away. Scientists have had success in initial research with embryonic stem cells and believe that they can
be developed into cures for diseases such as cancer, Parkinson's, heart disease, juvenile [Joo vuh ny ul] diabetes [dy uh BEE teez] , and spinal cord
injuries.
Having heard this description,
embryos?
do you strongly favor, somewhat favor, somewhat oppose, or strongly oppose medical research that uses stem cells from human
---------------------------------------------------------- Only
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CARAVAN
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OPINION RESEARCH CORPORA nON
Page
ORC
STUDY
CARAVAN
#715189
STEM
Question
MAY
5, 2006
CELL
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Page 4
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