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Withdrawal/Redaction Sheet
Clinton Library
DOCUMENT NO.
SUBJECT/TITLE
DATE
RESTRICTION
AND TYPE
001. memo
Larry Soler to Nancy Hernreich and Mary Morrison re: Presidential
06/21/2000
P6/b(6)
Announcement on Juvenile Diabetes (partial) (1 page)
002. fact sheet
re: Diabetes Research (partial) (1 page)
n.d.
P6/b(6)
003. fact sheet
re: Type 1 Diabetes (partial) (1 page)
10/1999
P6/b(6)
COLLECTION:
Clinton Presidential Records
Domestic Policy Council
Devorah Adler
OA/Box Number: 20463
FOLDER TITLE:
Diabetes [Folder 2]
2012-0463-S
rc740
RESTRICTION CODES
Presidential Records Act - [44 U.S.C. 2204(a)]
Freedom of Information Act - |5 U.S.C. 552(b)]
P1 National Security Classified Information |(a)(1) of the PRA]
b(1) National security classified information [(b)(1) of the FOIA]
P2 Relating to the appointment to Federal office [(a)(2) of the PRA]
b(2) Release would disclose internal personnel rules and practices of
P3 Release would violate a Federal statute [(a)(3) of the PRA]
an agency [(b)(2) of the FOIA]
P4 Release would disclose trade secrets or confidential commercial or
b(3) Release would violate a Federal statute [(b)(3) of the FOIA]
financial information |(a)(4) of the PRA]
b(4) Release would disclose trade secrets or confidential or financial
P5 Release would disclose confidential advice between the President
information [(b)(4) of the FOIA]
and his advisors, or between such advisors [a)(5) of the PRA]
b(6) Release would constitute a clearly unwarranted invasion of
P6 Release would constitute a clearly unwarranted invasion of
personal privacy |(b)(6) of the FOIA]
personal privacy |(a)(6) of the PRA]
b(7) Release would disclose information compiled for law enforcement
purposes [(b)(7) of the FOIA]
C. Closed in accordance with restrictions contained in donor's deed
b(8) Release would disclose information concerning the regulation of
of gift.
financial institutions [(b)(8) of the FOIA]
PRM. Personal record misfile defined in accordance with 44 U.S.C.
b(9) Release would disclose geological or geophysical information
2201(3).
concerning wells [(b)(9) of the FOIA]
RR. Document will be reviewed upon request.
A MAJOR ADVANCE IN THE TREATMENT OF DIABETES
TYPE 1 DIABETES: BACKGROUND INFORMATION
Type 1 diabetes is an "autoimmune" disease in which the immune system attacks and destroys the insulin-
producing islet cells of the pancreas.
1 million individuals with type 1 diabetes in the United States; ~ 30,000 new cases diagnosed each year
One of the most common chronic disorders in children; onset in early childhood and teens; costly, life-long disease
The leading cause of kidney failure, blindness in adults, and amputations
CURRENT THERAPIES ARE INSULIN INJECTIONS AND PANCREAS TRANSPLANTS
The most common treatment for diabetes is insulin.
Requires multiple daily injections and careful attention to diet and activity; blood sugar levels must be measured
several time a day by finger pricks
Insulin injections are essential for survival, but do not prevent severe complications of diabetes such as blindness,
kidney failure, stroke, and amputations
Extremely difficult for patients, especially children, to maintain "tight" control of their blood sugar
Transplantation: ~250 pancreas transplants and 1000 combined kidney-pancreas transplants are performed each
year in US.
Difficult surgical procedure with high rate of complications. More than 65% of pancreas recipients reject their
transplant within 3 years; rejections are also common with pancreas-kidney transplants
Shortage of donor organs severely limits the number of diabetics who can receive a transplant; >20% of patients
awaiting a pancreas transplant die while on the waiting list
Transplant recipients require a lifelong regimen of immunosuppressive drugs that increases risks of infections and
malignancies
Pancreatic islet cells transplants are being performed on an investigational basis.
Pancreatic islet cells are isolated from a donor pancreas and injected into one of the blood vessels supplying the
liver, where they lodge and produce insulin; compared to whole pancreas transplantation, this is a minimally invasive
procedure
However, long-term success of this procedure has been disappointing; of ~ 300 islet transplants performed in the last
10 years, more than 90% of recipients still require insulin injections
Islet recipients also require a lifelong regimen of immunosuppressive drugs, including steroids, to prevent rejection.
These drugs, especially steroids, appear to damage newly transplanted islet cells
RECENT ADVANCES IN ISLET CELL TRANSPLANTATION - THE "EDMONTON PROTOCOL"
An islet transplant study was recently conducted in Edmonton at the University of Alberta in a small number of
patients with severe type 1 diabetes; not funded by NIH; to be published in the New England Journal of Medicine
(July 27, 2000; made available on NEJM website June 6, 2000 due to medical urgency;
http://www.nejm.org/content/shapiro/1.asp)
4-15 months after transplantation, none of the patients treated under the "Edmonton protocol" require insulin
injections
What are the differences between the Edmonton protocol and earlier studies?
A new regimen of immunosuppressive drugs that is designed to eliminate the need for steroids
Uses an increased number of islet cells that are prepared to maximize viability and transplanted rapidly
FOLLOW-UP & EXPANSION OF THE EDMONTON PROTOCOL BY THE IMMUNE TOLERANCE NETWORK
An international consortium of NIH- and JDF-funded investigators, designated the Immune Tolerance Network,
will conduct a new study to confirm the Edmonton results in a larger number, of patients transplanted by clinical
research teams at multiple sites.
The expansion and validation of the Edmonton Protocol (see JDF briefing materials for details on this NIH/JDF
funded clinical trial) will provide a platform for future trials of new drugs and approaches that may eventually allow
islet transplantation without immunosuppression
This is the long-range goal of the Immune Tolerance Network - to test new therapies being developed by NIH-funded
researchers and the biotechnology/pharmaceutical industry that will: a) eliminate the need chronic
immunosuppression following transplantation; and b) treat or prevent autoimmune and allergic diseases, by
selectively modulating immune responses to "foreign" or "self" antigens and allergens.
003
06/21/00 WED 16:23 FAX
Wednesday, June 21, 2000 3:10 PM
JDF 202-371-9106
p.03
DETERMINED TO BE AN
ADMINISTRATIVE MARKING
Contact:
INITIALS: RUR DATE: 04/16/12
Julie Kimbrough, JDF, 212-479-7536, [email protected]
2012-0463-9
Jeff Matthews, Immune Tolerance Network, 604-512-3029, [email protected]
DRAFT BACKGROUNDER/CONEIDENTIAL
NIH/JDF Immune Tolerance Network to Announce Clinical Centers for Upcoming Trials of the
Edmonton Protocol
Last week, the New England Journal of Medicine published a study by Dr. James Shapiro and his research team
at the University of Alberta on their work in successfully transplanting human pancreatic islets into eight people
who had Type 1 diabetes. The new protocol is a very significant step forward in curing Type 1 diabetes. The
protocol used in the clinical trial at the University of Alberta, now referred to as the Edmonton Protocol, uses a
novel steroid-free combination of three drugs -which together prevents rejection and also prevents the
autoimmune diabetes from coming back.
The cells are extracted from the pancreases of organ donors and transplanted into the patients with Type 1
diabetes. The transplants involve a simple injection procedure which does not require surgery. The cells are
placed into the liver through the portal vein. The cells then migrate to the liver where, even though they are in a
different organ, take root and produce sufficient insulin and almost perfect control of blood sugar. The patients
in the trial, aged 29-53, all had severe low blood sugar-induced blackouts (hypoglycemia). The patients
continue to take an immunosuppressive drug therapy. The transplants are only recommended for people who
have truly failed at injected insulin treatment. It is not for children and not for people in good control of their
diabetes.
The Immune Tolerance Network (ITN), which is a joint initiative funded by the National Institutes of Health
(NIAID and NIDDK) and the Juvenile Diabetes Foundation will replicate the Edmonton Protocol in 10 centers
located in North America and Europe. The list of the centers chosen to participate in the multicenter study
have not yet publicly been announced. In all, the ITN will use the new technique to perform at least 40 islet
transplants in the ten centers over the next 18 months.
These selected centers are as follows:
University of Alberta Clinical Islet Transplantation Program, Edmonton, Canada
Diabetes Research Institute, University of Miami, Miami, Fl.
Diabetes Institute for Immunology and Transplantation, University of Minnesota, Minneapolis, Minn.
Juvenile Diabetes Foundation Center for Islet Transplantation, Harvard Medical School, Boston, Mass.
Organ/Tissue Transplant Research Center, National Institutes of Health, Washington, D.C.
Diabetes Research Training Center, Washington University, St. Louis, Missouri
Virginia-Mason Research Institute, Seattle, Washington
Geneva, Switzerland
Islet Transplant Centre, Justis-Liebig University, Giessen, Germany
San Raffaele Scientific Institute, University of Milan, Milan, Italy
The Immune Tolerance Network is a clinical research program headquartered at the University of Chicago and
jointly sponsored by the National Institute of Allergy and Infectious Diseases (NIAID), the National Institute of
Diabetes and Digestive and Kidney Disease (NIDDK) and the Juvenile Diabetes Foundation International. The
project is a $144 million initiative led by over 70 world-leaders in immune tolerance from over forty hospitals
and research institutions around the globe. Its aim is to bring new therapies to the clinic for kidney and islet
transplantation, autoimmune diseases, such as diabetes, lupus, rheumatoid arthritis and multiple sclerosis, as
well as allergy and asthma.
Hanna!
Lost your parents
1 phone- as
Call me! !
have
D
Withdrawal/Redaction Marker
Clinton Library
DOCUMENT NO.
SUBJECT/TITLE
DATE
RESTRICTION
AND TYPE
001. memo
Larry Soler to Nancy Hernreich and Mary Morrison re: Presidential
06/21/2000
P6/b(6)
Announcement on Juvenile Diabetes (partial) (1 page)
COLLECTION:
Clinton Presidential Records
Domestic Policy Council
Devorah Adler
OA/Box Number: 20463
FOLDER TITLE:
Diabetes [Folder 2]
2012-0463-S
rc740
RESTRICTION CODES
Presidential Records Act - [44 U.S.C. 2204(a)]
Freedom of Information Act - [5 U.S.C. 552(b)|
P1 National Security Classified Information [(a)(1) of the PRAJ
b(1) National security classified information [(b)(1) of the FOIA]
P2 Relating to the appointment to Federal office [(a)(2) of the PRA]
b(2) Release would disclose internal personnel rules and practices of
P3 Release would violate a Federal statute [(a)(3) of the PRA]
an agency [(b)(2) of the FOIA]
P4 Release would disclose trade secrets or confidential commercial or
b(3) Release would violate a Federal statute [(b)(3) of the FOIA]
financial information |(a)(4) of the PRA]
b(4) Release would disclose trade secrets or confidential or financial
P5 Release would disclose confidential advice between the President
information |(b)(4) of the FOIA]
and his advisors, or between such advisors [a)(5) of the PRA]
b(6) Release would constitute a clearly unwarranted invasion of
P6 Release would constitute a clearly unwarranted invasion of
personal privacy |(b)(6) of the FOIA]
personal privacy |(a)(6) of the PRA]
b(7) Release would disclose information compiled for law enforcement
purposes [(b)(7) of the FOIA]
C. Closed in accordance with restrictions contained in donor's deed
b(8) Release would disclose information concerning the regulation of
of gift.
financial institutions [(b)(8) of the FOIA]
PRM. Personal record misfile defined in accordance with 44 U.S.C.
b(9) Release would disclose geological or geophysical information
2201(3).
concerning wells |(b)(9) of the FOIA]
RR. Document will be reviewed upon request.
E
06/21/00 WED 16:22 FAX
C001]
Wednesday, June 21, 2000 3:
371-9106
P6/(b)(6)
Branch
Cheif
Steve Dhoamer
Loutta
p.02
P6/(b)(6)
uvenile Diabetes Foundation International
The Diabetes Research Foundation
in breakthorgh diabetes.
115 million
Public Affairs
to replicate to
NIH NIH/JDF
10 centers 40 translants
immune tolevance
MEMORANDUM
betwork
To:
Nancy Hernreich
over months
$144 M.
Mary Morrison
P6/(b)(6)
From:
Larry Soler
Director of Government Relations
immediately fast track
Subject:
Presidential Announcement on Juvenile Diabetes
trials replicate ondiabetes
Deadline: June 21 at 5:00 PM
10 centers
Date:
June 21, 2000
Pam Solo suggested that I call you to see if you can help us get a decision from the
Administration by 5:00 PM today on a policy announcement regarding juvenile diabetes research.
You probably heard a few weeks ago about the breakthrough research in Canada that resulted in 7
individuals being cured of juvenile diabetes through transplantation of insulin producing drugs.
The Administration is ready to announce that NIH is planning to fund 10 centers that will expand
this research to see if it works in a broader population.
We have been working with OSTP to see if the President would make this announcement. We
felt that this would be an opportunity for him to show that the Administration is speedily moving
forward on what could turn out to be the biggest breakthrough in diabetes research since the
discovery of insulin in the 1920s.
Our understanding is that the White House is very interested in doing this. However, we are
running into a time problem. The news on which centers will get this project is beginning to leak,
and the NIH grantees want to release the information. We have managed to get them to hold off
until 5:00 PM today so we can try to get a commitment from the Administration to make the
announcement. If we don't have that commitment by today, the NIH grantees will make the
announcement tomorrow. If we do get it, we can have some more time.
48
Can you help us speed the decision process along? This would be a wonderful opportunity to
show the Administration's commitment to curing juvenile diabetes and their quick action
Fauci
following the breakthrough.
You can call me at 202-371-9746 X. 12 to discuss this. Again, we have a deadline of 5:00 PM
today.
your help.
P6/(b)(6)
Rofrosen Dan Division Director
for Allergy Imm Trangel.
1400 I Street N.W. . Suite 530 Washington, D.C. 20005 202-371-9746 Fax: 202-371-2760
Withdrawal/Redaction Marker
Clinton Library
DOCUMENT NO.
SUBJECT/TITLE
DATE
RESTRICTION
AND TYPE
002. fact sheet
re: Diabetes Research (partial) (1 page)
n.d.
P6/b(6)
COLLECTION:
Clinton Presidential Records
Domestic Policy Council
Devorah Adler
OA/Box Number: 20463
FOLDER TITLE:
Diabetes [Folder 2]
2012-0463-S
rc740
RESTRICTION CODES
Presidential Records Act - [44 U.S.C. 2204(a)]
Freedom of Information Act - [5 U.S.C. 552(b)]
P1 National Security Classified Information [(a)(1) of the PRA]
b(1) National security classified information [(b)(1) of the FOIA]
P2 Relating to the appointment to Federal office [(a)(2) of the PRA]
b(2) Release would disclose internal personnel rules and practices of
P3 Release would violate a Federal statute [(a)(3) of the PRA]
an agency [(b)(2) of the FOIA]
P4 Release would disclose trade secrets or confidential commercial or
b(3) Release would violate a Federal statute [(b)(3) of the FOIA|
financial information [(a)(4) of the PRA]
b(4) Release would disclose trade secrets or confidential or financial
P5 Release would disclose confidential advice between the President
information [(b)(4) of the FOIA]
and his advisors, or between such advisors [a)(5) of the PRA|
b(6) Release would constitute a clearly unwarranted invasion of
P6 Release would constitute a clearly unwarranted invasion of
personal privacy |(b)(6) of the FOIA]
personal privacy |(a)(6) of the PRA]
b(7) Release would disclose information compiled for law enforcement
purposes [(b)(7) of the FOIA]
C. Closed in accordance with restrictions contained in donor's deed
b(8) Release would disclose information concerning the regulation of
of gift.
financial institutions [(b)(8) of the FOIA]
PRM. Personal record misfile defined in accordance with 44 U.S.C.
b(9) Release would disclose geological or geophysical information
2201(3).
concerning wells [(b)(9) of the FOIA]
RR. Document will be reviewed upon request.
Alan spiegel
P6/(b)(6)
HIGHLIGHTS OF DIABETES RESEARCH AT THE NATIONAL INSTITUTES OF HEALTH
Diabetes:
[002]
--Affects an estimated 16 million Americans, about one-third of whom do not know they have the disease.
--Sixth leading cause of death in the U.S.
--Causes debilitating and often life-threatening complications including blindness, irreversible
kidney failure, heart attack, stroke, and lower limb amputations.
Type 1 diabetes:
--Usually diagnosed in childhood or young adulthood; affects an estimated one million Americans.
--Autoimmune disease-immune system destroys the insulin-producing cells of the pancreas.
--Patients require lifelong administration of insulin to survive.
Type 2 diabetes:
--Usually develops in middle age; most prevalent form of the disease.
--Characterized by reduced insulin secretion and by resistance of the body to the action of insulin.
--Disproportionately affects minority populations, including African Americans.
--Major risk factors include obesity, sedentary lifestyle and family history.
--Can usually be controlled with diet, exercise, and oral medications.
Progress Since 1993:
Funding increases, coupled with emerging scientific opportunities, have enabled the NIH to pursue many
compelling avenues of diabetes research, and to implement a wide range of scientific recommendations
from the Diabetes Research Working Group, a panel of diabetes experts. Patients have benefitted from
unprecedented strides in biomedical research, which have increased understanding of the disease and
spurred the development of new treatment and prevention strategies. Some achievements include:
--Identification of genes implicated in both type 1 and type 2 diabetes, thereby providing novel targets for
treatment and prevention.
--Development of methods to predict with great accuracy those who are at high risk for developing type 1
and type 2 diabetes, thus enabling the initiation of major clinical trials that will soon demonstrate whether it
is possible to prevent the development of diabetes in these individuals.
--Evidence that blindness, kidney failure and other dreaded complications of diabetes can be prevented or
delayed through close control of blood glucose levels, as demonstrated in two major clinical trials.
--Development of several new drugs for treating type 2 diabetes and the definition of their mechanisms of
action so that even more effective drugs can be developed in the future.
--Development of innovative methods to isolate insulin-producing cells and to prevent the body from
rejecting them when they are transplanted into type 1 diabetes patients, thus facilitating this approach as
an alternative to lifelong insulin treatment in these patients.
Type 2 Diabetes-Basic Research Advances of Relevance
--The technology revolution has produced an explosion of new knowledge about the genetics of
obesity, a major risk factor for type 2 diabetes. Researchers have discovered important genes, such as
the obesity gene that produces the protein leptin, which can affect appetite and metabolic rate. The
identification of genes in spontaneous mouse models has helped to reveal new and intricate signaling
pathways between fat tissue and the brain-pathways that regulates appetite and metabolism and points to
possible targets for the development of new clinical interventions for type 2 diabetes.
1
P6/(b)(6)
-Major advances have been achieved in understanding the complex pathways of insulin action on its
target cells. Research has defined many critical steps in insulin action-beginning with the binding of
insulin to its cell receptors and continuing to its regulation of glucose transport and gene expression.
These advances provide novel targets for drug therapy, which are being tested in mouse and other animal
models in which the technology to knock out specific genes has been used to gain insights into the
disease mechanisms of diabetes.
Type 2 Diabetes--Clinical Research Advances
--Genes implicated in rare forms of type 2 diabetes have been identified and the search for
additional genes is proceeding rapidly-aided by the human genome project and the Type 2 Diabetes
Linkage Consortium. At least five such genes, each involved in some aspect of regulation of insulin
secretion or action, have already been identified. A striking example is the gene termed insulin promoter
factor-1, in which subtle mutations may contribute to more common forms of type 2 diabetes by impairing
insulin secretion. Progress in the development and application of genetic tools such as microarray
technology will enable researchers to determine how these genes function in pancreas, fat, liver and other
tissue highly relevant to type 2 diabetes.
--A major clinical trial (the United Kingdom Prospective Diabetes Study) demonstrated the
effectiveness of close glucose control in preventing the microvascular complications of type 2 diabetes.
The development of new drugs for therapy of type 2 diabetes and new methods of glucose monitoring
have made it easier to maintain good glucose control and thus achieve these benefits.
--Several new and effective drugs have been developed for type 2 diabetes, thereby expanding
the range of treatment options for patients. A new class of diabetes drugs that increase insulin sensitivity
was shown to act on a cell receptor protein termed PPAR-gamma, which genetic evidence now implicates
in some forms of type 2 diabetes. As new knowledge emerges from studies that reveal how genes are
differentially expressed in diabetes patients, it may be possible to tailor drug therapies to individual
patients to increase therapeutic benefits and reduce untoward effects.
Type 2 Diabetes--Initiatives in the FY 01 President's Budget Request
The President's Budget request will enable the NIH to undertake many important new initiatives to
understand and combat diabetes, including intensified research efforts to:
--Understand and address recent alarming reports of increased incidence of type 2 diabetes in
children from minority groups;
--Identify and address factors that may contribute to risk for development and progression of
complications including inherent metabolic and genetic variations, medical care, socioeconomic
status, and behavioral factors;
--Determine the reasons for disparities in the incidence of diabetes and its complications in minority racial
and ethnic populations;
--Investigate normal cell signaling processes in the tissues affected by diabetes and how these
processes are altered in this disease.
--Expand and speed the search for genes that predispose to type 1 and type 2 diabetes and
their complications;
--Expand the public-awareness campaigns of the National Diabetes Education Program, with emphasis
on
culturally sensitive messages to disproportionately affected minority populations.
--Extend the duration of the Diabetes Prevention Program, a multicenter clinical trial in type 2 diabetes
patients, with nearly 50% minority participation.
2
Note: Several of these initiatives are part of the new NIH-wide Health Disparities Strategic Plan.
Type 1 Diabetes-Initiatives Undertaken with Special Funds Provided by Balanced Budget Act
The BBA of 1997 provided a total of $150 million for a special five-year initiative on research to prevent
and cure type 1 diabetes. These funds have been used productively to fuel new initiatives addressing
areas that would maximally impact on the prevention and treatment of type 1 diabetes, including ways to:
--Achieve normal blood glucose regulation and to effect improvements in glucose sensors in order to
enable more careful and continuous monitoring of blood glucose levels.
--Develop innovative methods to prevent type 1 diabetes by finding ways to understand and address
abnormalities of the immune system that underlie this disease and how the functioning of genes in the
developing pancreas may affect this process.
-Combat the complications of type 1 diabetes by undertaking pilot and feasibility studies to develop
innovative research approaches; by focusing renewed efforts on the under-served research area of
neurologic complications; and by propelling new studies that focus research attention on the onset and
treatment of diabetes complications.
Importantly, these funds have attracted new research talent to the study of diabetes. Twenty-six percent
of the awards provided under this initiative in FY 1998 were to first-time NIH grantees. Thirty-seven
percent of these awards were made to established investigators who were new to the diabetes field.
Additional new efforts in FY 01 and 02 will focus on methods to increase understanding of the insulin-
producing beta cell; regional resource centers to supply insulin-producing cells to researchers for clinical
trials of islet-cell transplantation, in order to follow-up on recent successful studies in this area; and a
consortium for improved animal models of diabetes complications.
Note: Only a small proportion of total federal diabetes efforts is exclusively relevant to either type 1 or type
2 diabetes. Research applicable to both forms of diabetes includes studies of complications of diabetes;
of the cells that produce insulin and how insulin is released; and fundamental aspects of insulin action.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) leads NIH diabetes
research efforts.
3
JUL-12-2000 18:16
NIDDK/OSP
301 480 6741
P.01/04
The White House
DOMESTIC POLICY
FACSIMILE TRANSMISSION COVER SHEET
TO: DR ALAN SPIE9EL
FAX NUMBER: 301 402 2125
TELEPHONE NUMBER:
FROM: DEVORAH ADVER
TELEPHONE NUMBER: 2024565560 / /fax
PAGES (INCLUDING COVER): 2024565557
banks- it's the diabetes
COMMENTS: - can youplease seriew asap?
for tomorrow Carl or fire Plack
section of the grespaper
eaits
JUL-12-2000 18:16
NIDDK/OSP
301 480 6741
P.02/04
NIDDK CHANGES
7/12/00 5 Pm
INSERT HEADLINE
CAROL FELD 301-496-2420
July 13, 2000
PER DR. SPIEGEL
Today, at the National Conference of the NAACP, the President will announce that the National
Institutes of Health will immediately release $5 million to 10 research sites worldwide to fund
new clinical trials attempting to replicate the breakthrough "islet transplantation" protocol that
has effectively cured a small number of individuals with Type I diabetes. He will also highlight
that the Administration's Mid-Session review budget commits another $300 million over five
years for research on and prevention of all types of diabetes. In addition, the President's FY
for
2001 budget provides at least another $65 million for research on Type 2 diabetes, contributing
to a total of $561 million esearch applicable to both types of diabetes over the next year. As he
discussed this major new financing commitment, the President will unveil findings from a new
report, entitled "America's Children: Key National Indicators of Well-Being 2000" indicating
that the health and well being of American children continues to improve. However, the
President will also note that racial disparities in health status persist, and in so doing, highlight
the Administration's strong commitment to improving health. outcomes for all populations and
urge the Congress to fully fund the Administration's FY 2001 race and health initiative. Today,
the President will:
ANNOUNCE SIGNIFICANT NEW FUNDING INVESTMENT IN DIABETES
16
RESEARCH AND PREVENTION. Approximately X million people nationwide have
diabetes, a chronic disease with no cure that costs the health care system approximately $98
billion annually. Diabetes is the leading cause of new cases of blindness in people aged 20 to 74,
affecting up to 24,000 people each year. It is also the leading cause of non-traumatic lower-limb
amputations - more than 56,000 a year. In addition, people. with diabetes are more than twice as
likely to have heart disease or a stroke than people without the disease.
New investment in breakthrough clinical trials treating Type 1 Diabetes. Today,
President Clinton announced that the National Institutes of Health would invest $5 million in
10 sites worldwide in an attempt to replicate the breakthrough islet transplantation technique
demonstrated to have effectively cured Type 1 diabetes in a small number of patients. There
are approximately one million individuals with Type 1 diabetes nationwide approximately
25 percent of which are minorities, and 30,000 new cases are diagnosed every year - 13,000
in children.
Highlighted new investment of $150 million over 5 years in research on Type 1 diabetes
proposed in mid-session review. The President's Mid-Session review budget includes $150
million over five additional years at the National Institutes of Health for new research on
treatment and prevention of Type 1 diabetes, including ways to understand and address the
immune system abnormalities that cause the disease and combat complications of the
disease.
18:16
NIDDK/OSP
301 480 6741 P.03/04
Highlighted new investment of $150 million over five additional years to prevent and
treat diabetes in Native American populations. The President's Mid-Session review
budget includes approximately $ 150 million for over 300 tribal grant programs to prevent
the development of Type 2 diabetes in individuals at risk and enhance the diabetes care and
education provided at Indian Health Service clinics through the creation of new diabetes
clinics and teams of health care professionals dedicated to diabetes care.
in new or expanded initiatives
In
Flighlighted investment of at least $65 million dedicated to research on and prevention
of Type 2 diabetes in his FY 2001 budget. President Clinton announced that his FY
2001 budget proposes to dedicate at least X million to research on Type 2 diabetes, as part
of an overall investment of $561 million in diabetes research. This new funding will be used
65
to fund clinical trials aimed at developing more effective treatment; prevention strategies and
national education efforts for Type 2 diabetes; research on risk factors for development and
progression of complications for diabetes; and the reasons for racial disparities in the
incidence of diabetes. This funding will also be used to expand and speed the search for
genes indicating a predisposition to Type 2 diabetes and basic scientific research on the
at NIH
molecular basis for the disease.
RELEASE A NEW REPORT INDICATING THAT THE WELL BEING OF
AMERICA'S CHILDREN CONTINUES TO IMPROVE, BUT MORE MUST BE DONE
TO ADDRESS RACIAL DISPARITIES. Today, the President will release a new report by
the National Institute of Child Health and Human Development detailing that the health and
well-being of American children continues to improve, but that more must be done to eliminate
racial health disparities. Key findings include:
Childhood immunization status. In 1998, approximately S0 percent of children aged 19 to
35 months had received the full complement of vaccines, an increase of approximately X
percent since 1990. However, only 73 percent of African-American children received the
must be cleared with NICHD
full complement of vaccines as opposed to 82 percent of white, non-Hispanic children.
Infant mortality. In 1998, the national infant mortality rate was 7.2 deaths per 1000 births,
X percent lower than the 1990 rate. However, African-American children have consistently
higher mortality rates than white children - although their infant mortality decreased from X
to Y per 1000 births since 1993, their rates are still 2 percent higher than infant mortality
rates for white children
Adolescent birth rates. In 1998, the national rate of adolescent births was X per 1000
young women, Y percent lower than 1990 - a record low for the nation. However, the
adolescent birth rates for African American teenagers is X per 1000 young women, Y percent
higher than the rate among white adolescents.
Low-birthweight babies. Although low-birthweight rates are rising for children of all races,
in part because of the higher number of twin and triplet births has increased, 13.2 percent of
African American children were born at a low birthweight in 1998 as opposed to 7.6 percent
of white children.
JUL-12-2000 18:17
NIDDK/OSP
301 480 6741 P.04/04
In addition, the President will note that African Americans are: 40 percent more likely to die from
heart disease than whites. Native Americans suffer significantly higher rates of infant mortality
and heart disease. And Asian Americans are as much as five times more likely to die from liver
cancer associated with hepatitis.
MUST BE UEARED WITH NICHD
URGE THE CONGRESS TO FULLY FUND THE ADMINISTRATION'S RACE AND
HEALTH INITIATIVE. In order to address these and other racial health disparities, President
Clinton launched a new initiative in 1998 that set a national goal of eliminating by the year 2010,
longstanding disparities in health status that affect racial and ethnic minority groups in six key
areas: infant mortality; 2) diabetes; 3) cancer; 4) heart disease; 5) HIV/AIDS and 6)
immunizations. The President's FY 2001 Budget includes $35 million for these demonstration
projects. The House has fully responded to the President's request, while the Senate has
provided only $30 million The President reiterated his call to the Congress to fully fund this
critical initiative.
NOTE: IT 15 IMPORTANT To MAKE
CLEAR THAT 65 MILLION FOR IN
2ND BULLET OF PZ DOES NOT
REPRESENT ALL TYPE 2 DIABETES
RESEARCH. IT 15 FOR
So ME MAJOR NEW OR
EXPANDED INITIATIVES. THERE
1 nT of TYPEZ RESEARCH IN
TOTAL P.04
JUL-12-2000 16:46
NIDDK/OSP
301 480 6741
P.04/04
Guay-Broder, Colleen (NIDDK)
From:
Harris, Maureen (NIDDK)
Sent:
Wednesday, July 12, 2000 3:16 PM
To:
Guay-Broder, Colleen (NIDDK)
Subject:
type 1 diabetes and minorities
Colleen,
Minorities (Hispanics, blacks, Asian/Pacific Islanders, Native Americans/Eskimo/Aleuts) comprise 36% of those age 0-17
years. If we estimate that the rate of type 1 diabetes in minorities is approximately 2/3rds the rate in non-Hispanic whites,
then we can estimate that, of people age 0-17 years who have type 1 diabetes, 27% are of minority race-ethnicity.
(The proportion would be similar in people age 0-24 years because in this age group, minorities comprise 35% of the
population.)
For the layman. it might be useful to say that one in every four children and young adults with type 1 diabetes is of minority
race-ethnicity.
1
TOTAL P.04
JUL-12-2000 16:45
NIDDK/OSP
301 480 6741 P.01/04
OFFICE
OF SCIENTIFIC PROGRAM
National Institute of
AND POLICY ANAL YSIS
Disbates a Digestive &
Kidney Diseases
July 12, 2000
FAX TRANSMITTAL SHEET
FROM:
PHONE: (301) 496-6623
Fax: (301) 480-6741
Address: 31 Center Drive, MSC 2560
Building 31, Room 9A07
Bethesda, MD 20892
TO: Devorah Adler
OFFICE:
ADDRESS:
PHONE NO.:
FAX NO.: (202) 456 -5557
Number of pages in this transmission including this cover sheet
4
n:/adm/fax-ossp.wpd
JUL-12-2000 16:45
NIDDK/OSP
301 480 6741
P.02/04
Rewrite of last paragraph of WH release
0 Highlighted investment of at least $ 50 million (4 large ticket items described separately),
which is dedicated to major research initiatives on the treatment and prevention of Type 2
diabetes in his FY 2001 budget. President Clinton announced that his FY 2001 budget
proposes to dedicate a total of $561 million at the National Institutes of Health toward research
aimed at treating and preventing all forms of diabetes and its complications. These funds will be
used to continue and expand support for a wide range of high priority basic and clinical research
studies across the many institutes and centers of the NIH. This budget will help to spur the
application of new technolgies to yield important fundamental insights about diabetes and its
complications-research equally relevant to both type 1 and type 2 diabetes. Specifically targeted
to type 2 diabetes in FY 01 is over $50 million for three major multicenter clinical trials aimed at
developing more effective treatment and prevention strategies for this disease, as well as for
national education efforts to combat type 2 diabetes. The $561 million diabetes funding level
will also enable the NIH to undertake many other initiatives related to type 2 diabetes in FY 2001
including new research efforts to address recent reports of an increasing incidence of type 2
diabetes in minority children; the reasons for racial disparities in the incidence of type 2 diabetes;
and the search for genes that predispose individuals to type 2 diabetes.
CLEARED
DR
JUL-12-2000 16:46
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Highlights of "Large-Ticket" Type 2 Diabetes Initiatives
FY 01 Investments and Total Investments
1. Diabetes Prevention Program (DPP)-Nearing completion, the DPP is a multicenter randomized
clinical trial in 27 medical centers across the U.S. to determine whether type 2 diabetes can be prevented
or delayed in a population of high-risk individuals through lifestyle interventions and/or medications. This
trial is sponsored by several NIH Institutes (NIDDK, NICHD, NIA, Office of Research on Minority Health,
Office of Research on Women's Health), as well as the CDC, industry, and the private sector (American
Diabetes Association). Approximately 45% of the patients participating in this trial are from minority
groups.
Expenditure estimated for FY 01 based on President's Budget:
$ 20 million
Expenditure estimated over life of trial from 1994-2001:
$160 million
2. National Diabetes Education Program (NDEP)--The NDEP is a joint partnership of the NIDDK, the
Centers for Disease Control and Prevention and over 150 public and private sector partners. The
program's purpose is to improve the treatment and outcomes for people with diabetes, to promote early
diagnosis, and, ultimately to prevent onset of the disease. The participation of representatives of African
American organizations and groups representing other minority communities is a key feature of the NDEP
Partnership to ensure that public awareness messages are culturally sensitive and tailored to specific
audiences. As research advances are made with respect to new treatment and prevention approaches to
type 2 diabetes, the NDEP will be an increasingly important conduit of health information messages to the
public. For example, as the DPP nears completion, the NDEP will serve as a conduit for the dissemination
of the results and recommendations.
Expenditure estimated for FY 01 based on President's Budget:
$ 5 million
Expenditure estimated since inception of NDEP-1994-2001:
$ 21 million
The NIH is launching two major multicenter clinical trials in FY 01 aimed at reducing cardiovascular
mortality in type 2 diabetes-the major cause of death in this disease.
3. Study of Health Outcomes of Weight Loss (SHOW)-This new trial will be entering its large-scale
phase in FY01. It is a large, multicenter trial in obese type 2 diabetes patients. Researchers are studying
the impact of lifestyle and pharmacological interventions on sustained weight loss and on cardiovascular
mortality.
Expenditure estimated for FY 01 based on President's Budget:
$ 21 million
Expenditure estimated over life of trial from 1999-2010:
$180 million
4. Action to Control Cardiovascular Risk in Diabetes (ACCORD)- This large, multicenter trial will
focus on ways to control the multiple risk factors faced by type 2 diabetes patients, including blood
glucose levels and lipid levels with a view toward reducing cardiovascular mortality.
Expenditure estimated for FY 01 based on President's Budget:
$ XX million
Expenditure estimated over life of trial from XXXX-XXXX
$ XXX million
JUL-12-2000 16:12
NIDDK/OSP
301 480 6741
P.02/02
DIABETES RESEARCH
NIDDK
NIH
FY 1991
$175,114,000
$261,519,000
FY 1992
184,500,000
278,412,000
FY 1993
187,100,000
285,894,000
FY 1994
191,409,000
293,615,000
FY 1995
193,597,000
295,185,000
FY 1996
197,542,000
298,920,000
FY 1997
211,626,000
319,539,000
FY 1998
230,084,000
387,236,000
FY 1999
267,500,000
457,600,000
FY 2000 Estimate
313,500,000
525,100,000
FY 2001 President's Budget
338,600,000
561,000,000
TOTAL P.02
Indicators of
Children's Well-Being
Health Indicators
24
America's Children: Key National Indicators of Well-Being, 2000
General Health Status
T
he health of children and youth is basic to their well-being and optimal development. Parental reports
of their children's health provide one indication of the overall health status of the Nation's children.
This indicator measures the percentage of children whose parents report them to be in very good or
excellent health.
Indicator HEALTH1
Percentage of children under age 18 in very good or.excellent health by
poverty status, 1984-97
Percent
100
At or above poverty
80
Total
60
Below poverty
40
20
0
1984
1990
1995
1997
SOURCE Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey
In 1997, about 81 percent of children were
The percentage of children in very good or
reported by their parents to be in very good or
excellent health remained stable between 1984 and
excellent health.
1997. The health gap between children below and
Child health varies by family income. Children
those at or above the poverty line also did not
living below the poverty line are less likely than
change during the time period. Each year,
children in higher-income families to be in very
children at or above the poverty line were about 20
good or excellent health. In 1997, about 68
percentage points more likely to be in very good or
percent of children in families below the poverty
excellent health than children whose families were
line were in very good or excellent health,
below poverty.
compared with 86 percent of children in families
living at or above the poverty line.
Bullets contain references lo data that can be found in Table
Children under age 5 are about as likely to be in very
HEALTHI on page 85. See indicator ECONI.A and
good or excellent health as children ages 5 to 17.
ECONI.B on pages 14 and 15 for a description of child
poverty.
Part II: Indicators of Children's Well-Being
25
Activity Limitation
C
hildren whose activities are limited by one or more chronic health conditions may need more
specialized health care than children without such limitations. Their medical costs are generally higher;
they are more likely to miss days from school; and they may require special education services. 34 Researchers
use parental reports on limitations associated with chronic conditions to determine the prevalence of activity
limitations. Chronic conditions (such as asthma, hearing impairment, or diabetes) included in this measure
usually have a duration of more than 3 months. Activities include going to school, playing, and any other
activities of children.
Indicator HEALTH2
Percentage of children ages 5 to 17 with any limitation in activity resulting from
chronic conditions by poverty status, 1984-97
Percent
20
15
Below poverty
10
Total
At or above poverty
5
0
1984
1990
1995
1997
NOTE: In 1997, the National:Health Interview Survey was redesigned. Data for 1997 are not strictly comparable with earlier data
SOURCE Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey
In 1997, 8 percent of children ages 5 to 17 were
children ages 5 to 17 in families at or above the
limited in their activities because of one or more
poverty line, activity limitation increased from 6 to
chronic health conditions, compared with 3
8 percent.
percent of children younger than 5. Children and
The difference in activity limitation by income is
youth ages 5 to 17 have much higher rates of
also present among preschool-age children.
activity limitation than younger children, possibly
Children ages birth to 4 in families below poverty
because some chronic conditions are not diagnosed
had a rate of activity limitation that was higher than
until children enter school.
for children in families at or above poverty.
Children and youth in families living below the
Males ages 5 to 17 were more likely than females in
poverty line have significantly higher rates of
the same age group to have activity limitations for
activity limitation than children in more affluent
all years from 1984 to 1997.
families. Among children and youth ages 5 to 17,
11 percent of children living below poverty had
Bullets contain references to data that can be found in Table
activity limitations due to chronic conditions,
HEALTH2 on page 86. Endnotes begin on page 58.
whereas 8 percent of children in families at or
above poverty had a limitation in 1997.
From 1984 to 1997, activity limitation increased
from 9 to 11 percent among children ages 5 to 17
in families living below the poverty line. Among
26
America's Children: Key National Indicators of Well-Being, 2000
Childhood Immunization
A
dequate immunization protects children against several diseases that killed or disabled many children in
past decades. Rates of childhood immunization are one measure of the extent to which children are
protected from serious vaccine-preventable illnesses. The combined immunization series (often referred to as
the 4:3:1:3 combined series) rate measures the extent to which children have received four key vaccinations.
Indicator HEALTH3
Percentage of children 19 to 35 months of age with the combined 4:3:1:3 series
of vaccinations by poverty status, 1994-98
Percent
100
At or above poverty
80
Total
Below poverty
60
40
20
0
1994
1995
1996
1997
1998
NOTE: Vaccinations included in the combined series are 4 doses of diphtheria and tetanus toxoids and pertussis vaccine
(DTP), diphtheri anditetanus toxoids (DT) vaccine, 3 doses of polio vaccine, 1 dose of a measles containing vaccine (MCV), and 3 doses
of Haemophilus influenzae type 5(Hib) vaccine.
SOURCE: Centers for Disease Control and Prevention, National Immunization Program and National Center for Health Statistics, National
Immunization Survey
In 1998, 79 percent of children ages 19 to 35 months
Rates of coverage with the full series of vaccines were
had received the combined series of vaccines (often
higher among white, non-Hispanic children than
referred to as the 4:3:1:3 combined series).
among black, non-Hispanic or Hispanic children.
Children with family incomes below the poverty level
Eighty-two percent of white, non-Hispanic children
had lower rates of coverage with the combined series
ages 19 to 35 months received these immunizations
than children with family incomes at or above the
compared with 73 percent of black, non-Hispanic
poverty line-74 percent of children below poverty
children and 75 percent of Hispanic children.
compared with 82 percent of higher-income
In 1998, coverage with varicella vaccine among
children.
children ages 19 to 35 months increased
Overall and for children living above and below the
substantially, from 26 percent to 43 percent. Gains
poverty level, coverage with the combined series
in coverage for varicella vaccine were seen among
increased 3 percentage points between 1997 and
all children regardless of race or ethnicity and
1998. However, the gap in coverage between
poverty level; however, children living at or above
children in families living above and below the
the poverty line had higher coverage levels.
poverty level remained stable at 8 percentage points.
Coverage with three or more doses of Hib vaccine
Bullets contain references to data that can be found in Table
among children ages 19 to 35 months remained
HEALTH3 on page 87.
relatively stable at 93 percent.
In 1998, coverage with three or more doses of
hepatitis B vaccine among children ages 19 to 35
months increased 3 percentage points, to 87 percent.
Part II: Indicators of Children's Well-Being
27
Low Birthweight
L
ow-birthweight infants (infants born weighing less than 2,500 grams, or about 5.5 pounds) are at higher
risk of death or long-term illness and disability than are infants of normal birthweight. 35.36 Low-
birthweight infants are a diverse group: some are born prematurely, while others are small for their
gestational age.
Indicator HEALTH4
Percentage of infants bornof ow.birthweight by race and Hispanic origin,
1980-98
Percent of live births
15
Black, non-Hispanic
10
Total
Asian/Pacific Islander
5
American Indian/Alaska Native
Hispanic
White, non-Hispanic
0
1980
1985
1990
1995
1998
SOURCE: Centers for Disease Controlland Prevention, National Center for Health Statistics, National Vital Statistics System.
The percentage of infants born of low birthweight
infants (6.0 percent) and Puerto Ricans the highest
was 7.6 in 1998, up slightly from 7.5 percent in 1997.
(9.7 percent). Among Asian/Pacific Islander
The low-birthweight rate has increased slowly but
subgroups, low birthweight was lowest for births to
steadily since 1984. The 1998 rate is the highest
women of Chinese origin (5.3 percent) and highest
since 1973. 5
for women of Filipino origin (8.2 percent).
The low-birthweight rate for black, non-Hispanic
About 1.4 percent of infants were born with very low
infants declined during the 1990s, to 13.1 percent in
birthweight (less than 1,500 grams) in each year
each year, 1996 and 1997, before rising slightly to
between 1996 and 1998, up from 1.3 percent in each
13.2 in 1998, but is still higher than levels reported
year between 1989 and 1995, and 1.2 percent in
for the early to mid-1980s. The low-birthweight rate
each year between 1981 and 1988.
has risen during the 1990s for white, non-Hispanic
One reason for the increase in low birthweight over
infants, from 5.6 percent in 1990 to 6.6 percent in
the past several years is that the number of twin,
1998. The rate of low birthweight among Hispanic
triplet, and higher-order multiple births has
infants remained at 6.4 percent in 1998. The rate of
increased. 5,37,38 Twins and other multiples are much
low birthweight for American Indian/Alaska Native
more likely than singleton infants to be of low
infants was 6.8 percent, and the overall rate for
birthweight; 54 percent of twins and 94 percent of
Asian/Pacific Islander infants was 7.4 percent in
triplets, compared with 6 percent of singletons, were
1998.
of low birthweight in 1998.
The percentage of low-birthweight births varies
widely within Hispanic and Asian/Pacific Islander
Bullets contain references to data that can be found in Table
subgroups. Among Hispanics, women of Mexican
HEALTH4 on page 88. Endnotes begin on page 58.
origin had the lowest percentage of low-birthweight
28
America's Children: Key National Indicators of Well-Being, 2000
Infant Mortality
I
nfant mortality is defined as the death of an infant before his or her first birthday. The infant mortality rate
is an important measure of the well-being of infants, children, and pregnant women because it is associated
with a variety of factors, such as maternal health, quality of access to medical care, socioeconomic conditions,
and public health practices. 39 In the United States, about two-thirds of infant deaths occur in the first month
after birth and are due mostly to health problems of the infant or the pregnancy, such as preterm delivery or
birth defects. About one-third of infant deaths occur after the first month and may be influenced by social or
environmental factors, such as exposure to cigarette smoke or access to health care.⁴⁰
Indicator HEALTH5
Infant mortality rate by race and Hispanic origin, selected years 1983-98
Infant deaths per 1,000,live births
25
20
Black, non-Hispanic
15
Hispanic
Total
American Indian/Alaska Native
10
5
White, non-Hispanic
Asian/Pacific Islander
0
1983
1985
1990
1995
1998
NOTE: 1998 data are preliminary. Data are available for 983-9 and 1995.98.
SOURCE: Centers for Disease Control and Prevention, National Center for Health Statistics, National Linked File of Live Births and Infant
Deaths and National Vital Statistics System
The 1998 infant mortality rate for the United
Hispanic, Hispanic, and Asian/Pacific Islander
States, according to preliminary data, was 7.2 deaths
infants. In 1997, infant mortality rates varied from
per 1,000 births, substantially below the 1983 rate of
5.0 among Asian/Pacific Islander infants and 6.0
10.9.
among Hispanics to 8.7 among American
Infant mortality data are available by mother's race
Indians/Alaska Natives.
and ethnicity through 1997 41 Black, non-Hispanics
Infant mortality rates also vary within race and
have consistently had a higher infant mortality rate
ethnic populations. For example, among Hispanics
than white, non-Hispanics. In 1997, the black, non-
in the United States, the infant mortality rate
Hispanic infant mortality rate was 13.7, compared
ranged from 5.5 for infants of Central and South
with 6.0 for white, non-Hispanics.
American and Cuban origin to a high of 7.9 for
Infant mortality has dropped for all race and ethnic
Puerto Ricans. Among Asians/Pacific Islanders,
groups over time, but there are still substantial
infant mortality rates ranged from 3.1 for infants of
racial and ethnic disparities in infant mortality. In
Chinese origin to 5.8 for Filipinos.
1997, black, non-Hispanic and American
Indian/Alaska Native infants had significantly
Bullets contain references to data that can be found in Table
higher infant mortality rates than white, non-
HEALTH5 on page 89. Endnotes begin on page 58.
Part II: Indicators of Children's Well-Being
29
Child Mortality
C
hild mortality rates are the most severe measure of ill health in children. These rates have generally
declined over the past two decades. In 1997, unintentional injuries, birth defects, and cancer were the
leading causes of death among children ages 1 to 4, while at ages 5 to 14, unintentional injuries, cancer, and
homicide were the leading causes of death.
Indicator HEALTH6.A
Death rate among children ages 1 to 4 by race and Hispanic origin, 1980-98
Deaths:per 100,000 children ages 1-4
100
80
Black
60
Hispanic
Total
40
20#
White, non-Hispanic
Asian/Pacific Islander
0
1980
1985
1990
1995
1998
NOTE otal includes American Indians/Alaska Natives. Mortality rates for American Indians/Alaska Natives are not shown separately
because the numbers of deaths were too small for the calculation of reliable rates. 1998 data are preliminary.
SOURCE Centers for Disease Control andiPrevention, National Center for Health Statistics, National Vital Statistics System:
In 1998, the death rate for children ages 1 to 4 was 34
Death rates among children ages 1 to 4 by cause of
per 100,000 children, according to preliminary data.
death, 1997
Among children ages 1 to 4, black children had the
highest death rate in 1998, at 61 per 100,000 children
Deaths per 100,000 children ages 1-4
(preliminary data). Asian/Pacific Islander children had
14
the lowest death rate, at 19 per 100,000.
Between 1980 and 1998, the death rate declined by
12
almost half for children ages 1 to 4.
Among children ages 1 to 4, unintentional injuries were
10
the leading cause of death, followed by birth defects.
The mortality rate from unintentional injuries in 1997
8
was about half of what it was in 1980, having declined
from about 26 to 13 per 100,000. Mortality from birth
6
defects also declined by about half, from 8 deaths per
100,000 in 1980 to 4 in 1997.
Most unintentional injury deaths among children result
from motor vehicle traffic crashes. Use of child
2
restraint systems, including safety seats, booster seats,
0
and seat belts, can greatly reduce the number and
Unintentional injuries
Homicide
severity of injuries to child occupants of motor vehicles.
In 1997, 66 percent of child occupants ages 1 to 4 who
Birth detects
Heart disease
died in crashes were unrestrained. 42
Cancer
Pneumonia/InHuenza
30
America's Children: Key National Indicators of Well-Being, 2000
Indicator HEALTH6.B
Death rate among children ages 5 to 14 by race and Hispanic origin, 1980-98
Deaths per 100,000 children ages 5-14
100
80
60
40
Black
Total
20
Hispanic
White, non-Hispanic
Asian/Pacific Islander
0
1980
1985
1990
1995
1998
NOTE Total includes American Indians/Alaskal Natives. Death rates for American-Indians/Alaska Natives are not shown separately
because the numbers of deaths were too small for the calculation of reliable rates 1998 data are preliminary.
SOURCE: Centers for Disease Control and Prevention National Center for Health Statistics, National Vital Statistics System
The death rate in 1998 for children ages 5 to 14 was 20
Death rates among children ages 5 to 14 by cause of
per 100,000 children, according to preliminary data.
death, 1997
Among children ages 5 to 14, black children had the
Deaths per 100,000 children ages 5-14
highest death rates in 1998 at 29 deaths per 100,000
14
(preliminary data), and Asians/Pacific Islanders had
the lowest death rate at 14.
12
Between 1980 and 1998, the death rate declined by
almost one-third, from 31 to 20 deaths per 100,000
10
children ages 5 to 14.
Among children ages 5 to 14, unintentional injuries
8
were the leading cause of death, followed by cancer,
homicide, and birth defects.
6
The majority of unintentional injury deaths among
children ages 5 to 14 result from motor vehicle traffic
4
crashes. Over 75 percent of children ages 5 to 14 who
died in traffic crashes in 1997 were not wearing a
2
seatbelt or other restraint. 42
0
Bullets contain references to data that can be found in Tables
Unintentional injuries
Birth defects
HEALTH6.A and HEALTH6.B on pages 90 and 91. Endnotes
Cancer
Heart disease
begin on page 58.
Homicide
Pneumonia/Influenza
Part 11: Indicators of Children's Well-Being
31
Adolescent Mortality
C
ompared with younger children, adolescents ages 15 to 19 have much higher mortality rates.
Adolescents are much more likely to die from injuries sustained from motor vehicle traffic accidents or
firearms.
43 This difference illustrates the importance of looking separately at mortality rates and causes of
death among teenagers ages 15 to 19.
Indicator HEALTH7.A
Mortality rate among adolescents ages 15to 19 by cause of death, 1980-97
Deaths per 100,000 adolescents ages 15-19
100
All causes
80
All injuries
60
40
All motor vehicle traffic injuries
20
All.firearm.injuries
O
1980
1985
1990
1995
1997
SOURCE Centers for Disease Control and Prevention, National Center for Health Statistics, National Vital Statistics System
In 1997, the death rate for adolescents ages 15 to
Motor vehicle traffic-related and firearm death
19 was 75 deaths per 100,000. After increasing to 89
rates have followed different trends since 1980.
per 100,000 in 1991, the rate declined again and
From 1980 to 1985, both rates declined; in the
continues to be substantially lower than the rate in
following years, however, the motor vehicle traffic
1980. Injury, which includes homicide, suicide, and
death rate continued to decline modestly while the
unintentional injuries, continues to account for
firearm death rate increased markedly. During the
nearly 4 out of 5 deaths among adolescents.
years 1992-94, the two rates differed only slightly.
Injuries from motor vehicles and firearms are the
However, since 1994, the firearm death rate has
primary causes of death among youth ages 15 to 19.
decreased by one-third while the motor vehicle
Motor vehicle traffic-related injuries accounted for
death rate has only decreased slightly, increasing
36 percent of deaths in this age group during 1997,
the relative difference between the two causes
while injuries from firearms accounted for 25
again.
percent.
44
Most of the increase in firearm injury deaths
Motor vehicle injuries were the leading cause of
between 1985 and 1992 resulted from an increase
death among adolescents for each year between
in homicides. The firearm homicide rate among
1980 and 1997, but the death rate declined by one-
15- to 19-year-olds more than tripled from 5 to 18
third during the time period. Little change,
per 100,000 between 1983 and 1993. At the same
however, has occurred since 1992.
time, the firearm suicide rate rose from 5 to 7 per
In 1980, motor vehicle traffic-related deaths among
100,000. From 1994 to 1997, the firearm homicide
adolescents ages 15 to 19 occurred almost three
rate declined by nearly one-third and the firearm
times as often as firearm injuries (intentional and
suicide rate declined by about one-fourth.
unintentional).
32
America's Children: Key National Indicators of Well-Being, 2000
Indicator HEALTH7.B
Injury death rate among adolescents ages 15to 19 by gender, race, Hispanic
origin, and type of injury, 1997
Deaths per 00,000 adolescents ages 15-19
140
120
100
80
60
40
20
0
White non
Black, non-
Hispanic male
White, non
Black non
Hispanic female
Hispanic male
Hispanic male
Hispanic female
Hispanic female
All motor vehicle traffic injuries
All firearm injuries
SOURCE: Centers for Disease Control and Prevention, National Center for Health Statistics National Vital Statistics System:
Motor vehicle and firearm injury deaths were both
Motor vehicle and firearm mortality declined more
more common among male than among female
for males than for females between 1994 and 1997.
adolescents. In 1997, the motor vehicle traffic
Deaths from firearm injuries among teenagers
death rate for males was nearly twice the rate for
declined substantially between 1994 and 1997,
females, and the firearm death rate among males
particularly among black, non-Hispanic and
was seven times that for females.
Hispanic males. From 1994 to 1997, the firearm
Among adolescents in 1997, motor vehicle injuries
homicide rates for Hispanic and black, non-
were the most common cause of death among
Hispanic adolescent males declined substantially to
white, non-Hispanic males and females; black, non-
33 and 81 per 100,000, respectively.
Hispanic females; and Hispanic females. Firearm
injuries were the most common cause of death
Bullets contain references to data that can be found in Table
among black, non-Hispanic and Hispanic males.
HEALTH7 on page 92. Endnotes begin on page 58.
Black, non-Hispanic males were three times as likely
to die from a firearm injury as from a motor vehicle
traffic injury.
Deaths from firearm suicides were more common
than deaths from firearm homicides among white,
non-Hispanic adolescents. Deaths from firearm
homicides were more common than deaths from
firearm suicides among black, non-Hispanic and
Hispanic adolescents.
Part II: Indicators of Children's Well-Being
33
Adolescent Births
B
earing a child during adolescence is often associated with long-term difficulties for the mother, her
child, and society. The birth rate of adolescents under age 18 is a measure of particular interest because
the mothers are still of school age. Compared with babies born to older mothers, babies born to adolescent
mothers, particularly young adolescent mothers, are at higher risk of low birthweight and infant mortality. 5,36
They are more likely to grow up in homes that offer lower levels of emotional support and cognitive
stimulation, and they are less likely to earn high school diplomas. For the mothers, giving birth during
adolescence is associated with limited educational attainment, which in turn can reduce future employment
prospects and earnings potential. 45 These consequences are often attributable to poverty and the other
adverse socioeconomic circumstances that frequently accompany early childbearing.46
Indicator HEALTH8
Birth rate for females ages 15 to 17 by and Hispanic origin, 1980-98
Live births per 1,000 females ages* 15-17
100
Black, non-Hispanic
80
Black
Hispanic
60
American Indian/Alaska Native
Total
40
White, non-Hispanic
20
White
Asian/Pacific Islander
o
1980
1985
1990
1995
1998
NOTE: Rates for 1980.89 are calculated for all whites and all blacks. Rates for 980-89 are not shown for Hispanics; white, non-
Hispanics or black, non-Hispanics because estimates for these populations were not available.
SOURCE: Centers for Disease Control and Prevention, National Center for Health Statistics, National Vital Statistics System.
In 1998, the adolescent birth rate was 30 per 1,000
In 1998, 87 percent of births to young teenagers were
young women ages 15 to 17. There were 173,231
births to unmarried mothers, compared with 62
births to these young women in 1998. The 1998 rate
percent in 1980.
was a record low for the Nation. 5
While nearly four-fifths of all adolescent births are first
The birth rate among teenagers ages 15 to 17 declined
births, the steepest decline in birth rates for young
from 39 to 30 births per 1,000 between 1991 and 1998.
teenagers in the 1990s has been for second births to
This decline follows a period of substantial increase
adolescents who have already had one child. 5,47
between 1986 and 1991. During the early 1980s, the rate
The pregnancy rate (the sum of births, abortions, and
declined slightly and reached a low in 1986.
fetal losses per 1,000) declined by one-sixth for
There are substantial racial and ethnic disparities in
teenagers ages 15 to 17 during 1990-96, reaching a
birth rates among adolescents ages 15 to 17. In 1998,
record low of 68 per 1,000 in 1996. Rates for births,
the birth rate for this age group was 14 per 1,000 for
abortions, and fetal losses declined for young
Asians/Pacific Islanders, 18 for white, non-Hispanics,
teenagers in the 1990s. 48
44 for American Indians/Alaska Natives, 59 for black,
Declines in overall teenage birth rates are greater than
non-Hispanics, and 62 for Hispanics.
the reductions observed for unmarried teenagers
The birth rate for black, non-Hispanic females ages 15
(POP6A). Birth rates for married teenagers have fallen
to 17 dropped by nearly one-third between 1991 and
sharply in the 1990s, but relatively few teenagers are
1998, essentially reversing the increase from 1986 to
married.
49
1991. The birth rate for white, non-Hispanic teens
Bullets contain references to data that can be found in Table
declined by more than one-fifth during 1991-98. In
HEALTH8 on page 93. Endnotes begin on page 58.
contrast, the birth rate for Hispanics in this age group
did not begin to decline until after 1994; the rate fell
by one-sixth from 1994 to 1998.
34
America's Children: Key National Indicators of Well-Being, 2000
Indicators Needed
Health
National indicators in several key dimensions of health are not yet available because of difficulty in definitions and
measurement, particularly through survey research. The following health-related areas have been identified as
priorities for indicator development by the Federal Interagency Forum on Child and Family Statistics:
Disability. Research continues toward the
Services in the Substance Abuse and Mental Health
development of improved measures of disability
Services Administration are working with other
among children that can be derived from regularly
Forum agencies and academic researchers to
available data. Disability in children may involve
determine data needs on mental health for
chronic health conditions or limitations in mobility
children as well as the best methods of obtaining
and physical movement, sensory and
the data.
communicative ability, activities of daily living, or
Child abuse and neglect. Also needed are regular,
cognitive and mental health functions. Many
reliable estimates of the incidence of child abuse
definitions of disability are currently in use by
and neglect that are based on sample surveys rather
policy-makers and researchers, but there is little
than administrative records. Since administrative
agreement regarding which components should be
data are based on cases reported to authorities, it is
included, or how they are best measured. Parental
likely that these data underestimate the magnitude
or individual perceptions of limitations, the severity
of the problem. Estimates based on sample survey
and impact of the limitation, and access to health
data could potentially provide more accurate
care and services affect any estimate of disability
information; however, a number of issues still
among children.
persist, including how to effectively elicit this
Mental health. Efforts are currently underway to
sensitive information, how to identify the
evaluate data from a mental health indicator that
appropriate respondent for the questions, and
could be used in national surveys to estimate the
whether there is a legal obligation to report abuse
number of children with mental, emotional, and
or neglect.
behavioral problems. The National Institute of
Mental Health and the Center for Mental Health
Part II: Indicators of Children's Well-Being
35
ID:
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Date: 7/11/00
FAX
Health Division #
Office of Management and Budget
Executive Office of the President
Washington, DC 20503
To: Devorah
From: Pat
Number of Pages (excluding cover) 2
Subject: Diabetes
Comment: per my email
Voice Numbers:
Fax Numbers:
Health Division (Front Office)
(202) 395-4922
(202) 395-3910
Health & Human Services Br
(202) 395-4925
(202) 395-3910
Health Programs & Services Br
(202) 395-4926
(202) 395-5648
Health Financing Br
(202) 395-4930
(202) 395-7840
ID:
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Executive Summary
The Balanced Budget Act of 1997 provided $150 million over 5 years to Indian Health Service
(IHS) for the establishment of a Grants for Special Diabetes Program for Indians focused on
"the prevention and treatment of diabetes." The IHS was instructed to conduct an evaluation of
the grant program and provide an interim (year 2000) and final (year 2002) report to the
Congress.
The challenge is great. Significant and positive changes in diabetes activities have occurred in
American Indian/Alaska Native (AI/AN) communities as a result of the diabetes grant funds.
Here is a list of accomplishments:
Tribal Consultation
Grant program development involved the full participation of tribes and tribal leaders, urban
Indian organizations, and IHS staff. The IHS Director established the Tribal Leaders Diabetes
Committee to create a partnership between tribes and IHS for ongoing input and guidance on
diabetes issues.
Grant Awards
Grants were awarded to 318 programs under 286 administrative organizations within the 12 IHS
Areas. There were 27 grants awarded to IHS programs, 33 grants awarded to urban programs,
and 258 distributed to tribal programs.
Diabetes Prevention
Sixty-seven percent of the grant programs are focused on primary and secondary diabetes
prevention. Thirty-two percent are focused on tertiary diabetes prevention.
More diabetes prevention efforts now focus on elders (75%); young adults (68%);
adolescents (55%); school age children (42%); and preschool age children (33%).
Three-fourths of programs now focus more on clients with newly diagnosed diabetes; 68% of
grant programs focus more on family members of people with diabetes; and 37% focus more
on pregnant women as a result of the grant funds.
More emphasis is now placed on addressing preventive measures in adults who are
overweight (71.5%), people with high blood pressure (70%), children who are overweight
(56%), and on tobacco users (42.6%).
V
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Enhancement of Diabetes Care and Education
As a result of these grant funds, programs have both enhanced existing diabetes activities and
developed new ones. These activities are known to improve diabetes care to patients.
A significant number of programs use traditional approaches in their diabetes programs,
including story-telling (34%), talking circles (35%), and use of traditional herbs or
medicines (28%). Traditional approaches help support and influence positive diabetes
self-management behaviors within communities.
AI/AN communities established new diabetes teams (29%) and improved existing
diabetes teams (42%).
AI/AN communities created new diabetes registries (42%) and improved existing
diabetes registries (48%).
AI/AN communities established new diabetes clinics (21%) and improved existing
diabetes clinics (43%).
Community Involvement
The diabetes grant funds have afforded tribes the opportunity to address diabctes prevention
where it needs 10 be addressed--at the tribal community level. Significant advances in the
development of diabetes programs have been made. New diabetes care networks have formed
within and between tribal communities. They arc lcarning from each other which diabetes
prevention strategics work in AI/AN communities. This grant opportunity has allowed tribal
communities to move further along their paths to wellness and diabetes prevention. But these
funds were "seed money," just enough to get programs started. Five years is not nearly enough
time to accomplish the goal of diabetes prevention.
The advances achieved in AVAN communities as a result of these funds will be lost without the
means to continue and expand the established programs. AI/ AN communities will need
continued funding beyond the five years allowed through the Balanced Budget Act of 1997 to
continue to implement and expand upon the valuable lessons learned through this process.
Diabetes prevention on all levels should bring the health of this population to the same level as
that of all Americans in the next millennium. With these grants, American Indian and Alaska
Native communities are finding their own paths to diabetes control and better health.
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Diabetes:
A Serious Public Health Problem
AT-A-GLANCE
2000
CDC's Diabetes Control Programs, 1999*
MA
RI
cr
DE
MD
NH
NJ
VT
DC
Comprehensive Diaberes Control Programs
Core Diabetes Control Programs
CDC also funds the following territories for cure diabetes control programs: American Samoa, Federated States of
Micronesia. Cuam, Marshall Islands, Northern Marian3 Islands, Palau, Puerto Rico. and U.S Virgin Islands
"Those who suffer losses due IO diabetes are not just statistics on a chart.
They are people whose calents and wisdom are needed and whose problems deserve OUT unified efforts
Together we can join to make life more just and more joyful for generations to come."
David Satcher, MD, PhD
Assistant Secretary for Health and Surgeon General
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
CDC
Centers for Disease Control and Prevention
CENTERN FOR DISEASE CONTROL
AND PREVENTION
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Diabetes: A Serious Public Health Problem
What Is the Health Burden?
The facts about diabetes leave no doubt about its
Number of Persons With Diagnosed Diabetes
seriousness. The seventh leading cause of death in the
United States," diabetes contributes to more than
11
193,000 deaths each year. Currently, an estimated
10
10.3 million people in the United States have been
9
diagnosed with diabetes-a sixfold increase over the
8
past four decades-and another 5.4 million people have
undiagnosed diabetes. These people are all at increased
risk for serious health complications, including
Number of persons (millions)
7
6
5
Blindness. Diaberes is the leading cause of new
4
cases of blindness in adults aged 20-74 years.
3
2
Kidney failure. Diabetes is the leading cause of
1
end-stage (chronic, irreversible) kidney disease.
0
Amputations. Diabetes is the leading cause of
1958
1963
1968
1973
1978
1983
1988
1993
1998
lower-extremity amputations not related to injury.
Year
Cardiovascular disease. People with diabetes are
Source National Institutes of Health and Centers for Disease Control
2-4 times more likely to develop heart disease
and Prevention, 1998.
or stroke than people without diabetes.
Diabetes and ITS complications occur among Americans
What Is Diabetes?
of all ages and racial and ethnic groups. The burden of
The term diabetes describes either a deficiency of
this disease IS heavier among elderly Americans-more
insulin or a decreased ability of the body to use insulin,
than 18% of adults over age 65 have diabetes-and
a hormone secrered by the pancreas. Insulin allows
certain racial and ethnic populations, including African
glucose (sugar) to enter cells and be converted to
Americans, Hispanics/Latinos, and American Indians
energy. Insulin is also needed to synthesize protein and
and Alaska Natives. For example, American Indians
store fats. In uncontrolled diabetes, glucose and lipids
and Alaska Natives are 2.8 times more likely to have
(fats) remain in the bloodstream and, with time,
diagnosed diabetes than non-Hispanic whites of similar
damage vital organs and contribute TO heart disease.
age. Several studies have also shown increased rates
Diaberes is classified into TWO main types: type 1 and
among certain Asian and Pacific Islander populations.
type 2. Between 5% and 10% of people with diabetes
have type 1, which most often appears in childhood
What Are the Economic Costs?
or the reenage years. Type 2 affects 90%-95% of
Diabetes imposes a heavy economic burden each year.
people with diabetes and usually appears after age 40.
The American Diabetes Association estimates that the
Some women develop diabetes during pregnancy.
nation spends more than $98 billion annually on the
Known as gestational diabetes, this condition occurs
direct and indirect costs of diabetes.
in 2%-5% of all pregnancies. Other, less common
The full burden of diabetes-in terms of death,
types of diabetes, which together may account for
complications, and costs-is not easy to measure.
1%-2% of all diagnosed cases, result from specific
Mortality records often fail to reflect the role of
genetic syndromes, surgery, drugs, malnutrition,
diabetes in premature deaths, and the costs relared to
infections, and other illnesses.
undiagnosed diabetes are unknown. Furthermore, for
families and communities, the loss of people's lives and
abilities transcends numerical measures.
When heart disease and scroke are combined (as pan of rocal
cardiovascular diseases). diabetes is the sixth leading cause of death.
2
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Many Complications of Diabetes Can Be Prevented
What Are the Opportunities for Prevention?
Poorly Controlled Glucose Levels
The increasing burden of diabetes and its complica-
Results from a recent study in the United
tions is alarming, but the good news is that much of
Kingdom indicate that intensive treatment to
the burden of this major public health problem can
control glucose levels in people with type 2
be prevented with early detection, improved
diaberes reduces the risk of complications
delivery of care, and better education on diabetes
significantly more than diet therapy alone.
self-management. The following are examples of
Because 90%-95% of people with diabetes have
diabetes-related complications that could be prevented
type 2, these findings can help prevent many
or reduced:
serious complications. Similarly, the Diabetes
Eye Disease and Blindness
Control and Complications Trial-a national
10-year study of people with type 1 diabetes-
Each year, an estimated 12,000-24,000 people
confirmed that intensive therapy to control
become blind because of diabetic eye disease. Early
blood glucose levels can significantly prevent the
detection and treatment can prevent up to 90% of
onset or delay the progression of eye, kidney, and
this blindness. If all people with diabetes received
nerve damage.
recommended screening and follow-up for eye
disease, the annual savings to the federal budget
could exceed $470 million.
Preventing Blindness
Kidney Failure
Caused by Diabetes
Each year, about 33,000 people with diabetes
develop kidney failure, and more than 100,000
Diabetes is the leading cause of
people with diabetes receive treatment for this
condition. Medicare COSTS for this treatment
new cases of blindness among
average $51,000 per person; total Medicare
adults aged 20-74 years.
expenditures for treating diabetic kidney failure
exceed $5.1 billion each year. Because the rate of
Twenty-five percent of adults with
kidney failure is rapidly increasing, these COSES are
diabetes, or about 1.6 million
expected to rise. At least half of the new cases of
diaberes-related kidney failure each year could be
people, report that they are
prevented. The total first-year CUST of treating
visually impaired.
these preventable cases is about $842 million.
Lower-Extremity Amputations
Early detection and treatment
could prevent up to 90% of
About 86,000 people undergo diabetes-related
lower-extremity amputations each year. These
diabetes-related blindness.
amputations COST more than $860 million annually
in hospitalization costs alone. Over half of these
Only 60% of people with diabetes
amputations could be prevented.
are receiving annual dilated eye
Complications of Pregnancy
examinations-a key strategy for
Women with preexisring diabetes give birth to
preventing blindness caused by
more than 18,000 babies each year. For every $1
diabetes.
invested in preconception care for these mothers,
$1.86 can be saved by preventing adverse maternal
Source: Centers for Disease Control and Prevention,
1998.
and infant health outcomes associated with
diabetes.
3
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CDC's National Leadership
CDC joins with state and territorial health depart-
visits (31%). They also reported increases in visits
ments and other partners IO focus efforts on all
IO eye care providers (12%) and podiatrists (51%).
populations at increased risk for diabetes and its
The Michigan Diaberes Control Program's Upper
complications. With fiscal year 2000 funding of
Peninsula Diabetes Outreach Nerwork established
$51 million, CDC provides leadership for a
a diabetes care and education program with
coordinated, multifaceted approach targeting diabetes.
hospitals, health departments, and home care
Goals are to increase awareness and education about
agencies. Participants in the program experienced a
diabetes, promote early detection of diabetes and
45% lower rate of hospitalizations, a 31% lower
treatment of its complications, improve the quality of
rate of lower-extremity amputations, and a 27%
diabetes care, and enhance access to diabetes care by
lower death rate than nonparticipants. This
improving and expanding services.
program has been replicated in five new outreach
networks throughout the state.
Implement Effective State Programs
Nationwide
The Utah Diabetes Control Program works with
CDC supports state- and terricorial-based diaberes
local partners to ensure that people with diaberes
control programs to reduce the complications
throughout the state have access to education on
associated with diabetes. In fiscal year 1999, CDC
self-care to help minimize the development of
provided limited support to 34 states, 8 territories, and
debilitating complications of diabetes. Partly as a
the District of Columbia for core diaberes programs
result of these efforts, the percentage of Utahns
and more substancive support to 16 states for
with diabetes who never monitored blood glucose
comprehensive programs. The core programs do not
levels decreased from 33% in 1991 to 12% in 1997,
address needs statewide; however, they serve as the
and the percentage of those who had received a
framework on which states build more comprehensive
dilated eye examination in the past year increased
programs. When resources become available, CDC
from 46% in 1991 to 71% in 1997.
plans TO expand ITS comprehensive programs to
Implement the National Diabetes
additional states.
Education Program
Examples of state activities include the following:
CDC and the National Institutes of Health jointly
The California Diabetes Control Program
sponsor the National Diabetes Education Program
conducted a diabetes project to assess the effects of
(NDEP). Through collaboration with over 100 public
case management on blood glucose levels among
and private partners, this program seeks to improve
MediCal (Medicaid) patients. Blood glucose levels
the treatment and outcomes of people with diabetes,
had declined significantly at 18 months of follow-
promote early detection, and ultimately prevent the
up among patients who received diabetes care
onset of diabetes.
guidelines, patient follow-up, blood glucose
The NDEP develops educarional tools and
monitoring instruction, and nutrition education in
community-based interventions and establishes public
addition to usual care from primary care providers.
and private sector parmerships to address the needs of
Improved glucose control decreases the patient's
people with diabetes and raise general awareness about
risk of complications and ultimately decreases
the disease. Recently, the NDEP launched its first
health care costs.
public awareness campaign with the theme, "Control
The Maine Diabetes Control Program worked with
Your Diabetes. For Life." Included in the campaign are
local diabetes educators to administer a
public service announcements targeting general
comprehensive diabetes self-management
audiences, as well as messages directed toward
education program in 90% of Maine's hospitals and
Hispanic/Latino communities. Campaigns addressing
many health centers. Participants reported
the needs of African Americans, American Indians,
significant reductions over a 5-year period in
and Asian Americans/Pacific Islanders are currently
diaberes-related hospitalizations (43%), emergency
being developed.
room visits (36%), and illness-related physician
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Better Define the Diabetes Burden
risk of death from influenza and pneumonia, only
Understanding how diabetes is distributed in the
50% get an annual flu shot. As part of CDC's
population is essential TO effectively targering
ongoing public service campaign Diabetes. One
prevention efforts. CDC uses multiple sources of data to
Disease. Many Risks, the Diaberes and Flu/
track diaberes, including its Behavioral Risk Factor
Pneumococcal Campaign educates people with
Surveillance System, which provides state-specific
diabetes about the importance of getting flu and
information on risk factors and health care practices
pneumonia shors. CDC develops campaign kits
related to diabetes. CDC also uses the National Health
that It disseminates through national media
and Nutrition Examination Survey and the National
channels, health systems, and state diabetes
Health Interview Survey. In addition, CDC maintains il
control programs. Individual states can tailor these
national system that provides data about diabetes; these
materials (available in English and Spanish) to
data are widely disseminated through diabetes
their own populations.
surveillance reports. CDC will also explore new
methods for tracking diabetes among special
populations.
CDC develops projections of the economic burden of
diabetes by examining how Medicare and Medicaid
data can be used to generate information on diabetes
trends and the anticipated costs of treatment and
preventive services. To help focus future research,
CDC has published a comprehensive, annotated
If you have
bibliography of all recent economic studies of diabetes.
Diabetes
Translate Science Into Quality Care
A
FLU
Shot
CDC is working with partners in managed care to
Could Save
determine how to improve care for people with
diabetes Through Diaberes Translational Research
Your
Centers and a supporting Data Coordinating Center,
Life
CDC IS
Assessing how health care providers and delivery
systems implement accepted standards of care.
Prevention Is
Exploring variations in the implementation of
Control
quality diabetes care.
Developing and testing strategies to close the gap
MIG
BLOODUNC
by
CDC
and
your
bellin
between existing practices and optimal standards of
care.
CDC has dedicated $3 million to the National
Diabetes Laboratory to support scientific studies that
Diaberes Today-This program provides health
professionals and community leaders with the
will improve the lives of people with diabetes.
skills needed to mobilize communities and to
Current research includes efforts to find noninvasive
ways to monitor blood glucose to prevent
develop appropriate interventions to prevent
hypoglycemia, which can cause comas; [0 improve
diabetes complications and improve diabetes care.
instruments that measure blood glucose; and to better
One outcome of this educational program 13 the
understand the role of autoantibodies in the
development of a strategic plan that is community
development of type 1 diabetes.
owned and culturally relevant to the local
population. Two Diabetes Today centers-one for
the continental United States and Alaska and the
Develop Innovative Approaches
other for Hawaii and the Pacific basin-will
Diabetes and Flu/Pneumococcal Campaign-
provide training and technical assistance.
Although people with diaberes have an increased
5
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Target Special Populations
predominantly African American community of
National Diabetes Prevention Center-Ainerican
25,000 in southeast Raleigh, North Carolina.
Indian populations have a high incidence and
Community outreach, health promotion activities,
prevalence of diabetes and its complications. In
and quality improvement strategies for local health
1998, CDC funded a center in Gallup, New
care providers are the key program intervention
Mexico, to promote diabetes prevention and
components. Diaberes management and nutrition
control among the Navajo Namon and the Zuni
courses, organized walking programs, and diabetes
Pueblo. The center will develop culturally relevant
screenings are being implemented to improve the
prevention strategies through focused intervention
health-related quality of life for this community.
research, surveillance, program evaluation,
Lessons learned will be incorporated into CDC's 59
training, and tribal capacity-building activities.
state- and territorial-based diabetes control programs.
Research findings, strategies, and benefits will
ultimately be applicable to other American Indian
Build National Partnerships
tribes and similar populations.
Committed to building strong narional partnerships to
National Minority Organizations-In 1998, CDC
reduce the burden of diabetes, CDC collaborates with
selected six national minority organizations to
its partners TO provide data for sound public health
support NDEP programs to reach African
decisions, inform the public about diaberes, and ensure
American, Hispanic/Latino. American Indian, and
optimal diabetes care and education for all people with
Asian American/Pacific Islander populations with
diabetes in the United States. One product of these
culturally and linguistically appropriate diabetes
partnerships is the National Diabetes Fact Sheet:
prevention and control messages. These
National Estimates and General Information on Diaberes
organizations are developing and delivering
in the United States, produced by CDC in collaboration
diabetes care messages through trusted community
with the following organizations: American
channels and developing partnerships with other
Association of Diabetes Educators, American Diaberes
national organizations that serve these groups.
Association, Department of Veterans Affairs, Health
Resources and Services Administration, Indian Health
National Hispanic/Latino Diaberes Initiative for
Service, Juvenile Diaberes Foundation International,
Action-This special population initiative develops
National Council of La Raza, National Diaberes
diabetes prevention strategies that are relevant to
Education Program, National Institute of Diaberes and
U.S. Hispanic/Larino communities. CDC is
Digestive and Kidney Diseases of the National
incorporating strategic recommendations from an
Institutes of Health, and the U.S. Department of
expert consultant group into the new 5-year funding
Health and Human Services' Office of Minority
cycle for state diabetes control programs.
Health.
Diabetes and Women's Health Monograph-
CDC is developing a monograph, Diaberes and
Offer International Treatment Options
Women's Health Across the Life Stages: A Public
By 2025, 300 million people worldwide will have
Health Perspective, to highlight the effect of
diabetes. Because most of these cases will be in
diabetes on the life cycle of women The
developing countries and among poorer people, CDC is
monograph will describe the epidemiology of the
helping develop low-cost treatment options. As a World
disease, address community needs, and examine
Health Organization Collaborating Center for Diabetes,
psychosocial issues related to women with
CDC is working with the Pan American Health
diabetes.
Organization to implement the Declaration of the
Project DIRECT-Project DIRECT is a multiyear
Americas, which includes developing guidance
community diabetes demonstration project in a
documents for international diabetes control programs.
For more information or additional copies of this document, please contact the
Centers for Disease Control and Prevention,
National Center for Chronic Disease Prevention and Health Promotion, Mail Stop K-10,
4770 Buford Highway NE, Atlanta, GA 30341-3717.
Toll-free 1-877-CDC-DIAB
[email protected] http://www.cdc.gov/diabetes
6
ID:
JUL 12'00
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001 P.02
inthe coming
202-
months
395
5648
Billing Code: 4163-18-P
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
[Program Announcement 00097]
Uniform Population-Based Approach to Case Ascertainment Typology. Surveillance, and Research
Childhood Diabetes
Notice of Availability of Funds
A. Purpose
The Centers for Disease Control and Prevention (CDC) announces the availability of fiscal year (FY) 20
funds for a cooperative agreement program to develop a multi-center and uniform population-based app
to case ascertainment, typology, surveillance, and research on childhood diabetes (diagnosis before the a
of 20 years). This program addresses the "Healthy People 2010" focus area of Diabetes. For the confere
copy of "Healthy People 2010," visit the internet site: <http://www.healihypeople>. In view of the
importance of racial and ethnic health disparity issues, the purpose of the program is to use a uniform m
center approach in diverse populations for multiple purposes:
1. Using existing data of known prevalent cases of childhood diabetes, develop a uniform typolog
the prevalent cases, obtain type-specific prevalence estimatos, and describe characteristics of the
different types of childhood diabetes;
2. Based on the extensive collection of new cases of childhood diabetes, develop a uniform typolo
of the incident cases, obtain accurate and precise population-based estimates of the type-specific
incidence and secular trends of new cases, and describe the characteristics of the different types 0
childhood diabetes;
3. Develop a uniform approach to follow incident cases of childhood diabetes to ascertain change
typology, characteristics and outcomes, and to maintain a "pool" of incident cases of childhood
diabetes.
Characterization of types of childhood diabetes should include a description of potential risk factors
(including family history, maternal diabetes, race/ethnicity. sex, weight and height, birth-weight, etc), ot
characteristics (including presence of acanthosis nigricans, symptoms and circumstances at or preceding
diagnosis, treatment and response to treatment, HbAlo. lipids. and blood pressure levels, etc), potential
laboratory measurements (C-peptide and insulin levels, immunological markers, etc), potential complica
(including microalbuminuria, hypertension, retinopathy, neuropathy, infections, etc), and quality of med
care (including screening frequencies for HbAlc, lipid profiles, microalbuminuria, retinal and foot
examinations, blood pressure checks, nutrition counseling, rates of hospitalization for complications etc
This collaborative program will consist of two phases. Phase 1 (12 months) - Planning, developing
networks of care providers and other partnerships, and collaboration on the development of the protocol
Institutional Review Board clearances. Phase If (48 months) - - Date collection, monitoring, analyzes, an
collaborative reporting of the results. on a yearly basis.
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B. Eligible Applicants
Applications may be submitted by public and private nonprofit organizations and by governments and th
agencies; that is, universities, colleges. research institutions, hospitals, other public and private nonprofi
organizations. State and local governments or their bona fide agents, and federally recognized Indian tri
governments, Indian tribes. or Indian tribal organizations.
Note: Public Law 104-65 states that an organization described in section 501(c)(4) of the Internal Reven
Code of 1986 that engages in lobbying activities is not eligible to receive Federal funds constituting an
award, grant, cooperative agreement, contract, loan, or any other form.
C. Availability of Funds
Approximately $500,000 is available in FY 2000 to fund approximately 2 to 3 awards. It is expected tha
average award will he $200,000 ranging from $150,000 to $250,000. It is anticipated that additional fun
may be available in FY 2001-2004 to increase the average award to approximately $500,000 in Years 2-
ranging from $400,000 to $600,000. It is expected that the awards will begin on or about September 30,
2000, and will be made for a 12-month budget period within a project period of up to S years. Funding
estimates may change.
Continuation awards within an approved project period will be made on the basis of satisfactory progres
evidenced by required reports and the availability of funds.
Use of Funds
Funds are awarded for a specifically defined purpose and must be targeted for implementation and
management of the project. Funds can support personnel, activities directly related to the project, and th
purchase of software for data collection, analysis, and project management and evaluation purposes.
Prohibited Uses: Cooperative agreement funds under this program announcement cannot be used for (1)
construction, (2) renovation, (3) the purchase or lease of passenger vehicles or vans, (4) to supplant non
federal funds that would otherwise be made available for this purpose, or (5) cost of regular patient care
Funding Priority
In making awards, priority consideration will be given as follows. Due to the high prevalence of type 2
diabetes in American Indian children, funding priority will be given to at least one center which will hav
access to American Indian populations. In addition, approved applications may also be ranked and funde
based on populations with racial/ethnic and socio-economic diversity to achieve geographic, socio-econ
and racial/ethnic representation of the U.S. population, and a minimum mix of the different types of
childhood diabetes (at least 20% type 2).
Minimum requirement
Applications for the development of a multi-center and uniform population-based approach to case
ascertainment, typology, surveillance, and research on childhood diabetes in diverse populations require
accoss to information on large numbers of children with diabetes (minimum of 50 incident cases per yea
and their referent populations (minimum of 300,000 children under the age of 20) with racial/ethnic and
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socio-economic diversity, including under-insured.
Institutions may apply as a single entity or in collaborative partnership or network(s). However, only on
institution will be named as the recipient of funds in a partnership/network.
Eligibility characteristics for review must be clearly specified with appropriate documentation in the
Application Requirements section of your application (see Application Content).
D. Program Requirements
In conducting activities to achieve the purpose of this program, the recipient will be responsible for the
activities under 1. (Recipient Activities), and CDC will be responsible for the activities listed under 2. (C
Activities).
1. Recipient Activities
a. Establish and sustain networks or partnerships with health care providers and health care systems
have access to information on cases of childhood diabetes. Collaborate with other health organiza
community groups, State Health Department, Diabetes Control Programs etc., as necessary to
accomplish program activities.
b. Establish a Steering Committee that will be the primary governing body of the study and will be
comprised of each of the Principal Investigators from each center. The Steering Committee will h
primary responsibility for developing manual(s) of operations and common study protocols,
submitting the protocols for CDC and other Institutional Review Boards, and coordinating resolut
of Institutional Review Board issues, facilitating the conduct of the study and on-going data colle
analyses, and reporting of study results.
c. Participate in the methodology and protocol development, on-going data collection and follow-up
quality control, data analysis and interpretation, the preparation of peer-reviewed publications, an
presentation of findings.
d. Work cooperatively with the other Centers, and agree to follow the common protocol(s) and manu
of operations developed in Phase I of the study by the Steering Committee.
0. Maintain an effective and adequate management and staffing plan. Staff should have the educatio
background, and experience to successfully conduct the activities proposed in this application. As
part of the application, the existing staff and all proposed positions should to be included.
2. CDC Activities
a. Support the recipients' activities by collaborating and providing scientific and public health
consultation and assistance in the development of activities related to the cooperative agreement a
coordination sharing.
b. Assist in facilitating communication among recipients development of common multi-center proto
(s), quality control, interim data monitoring. data analysis, interpretation, reporting, and coordinat
c. Assist in the development of a research protocol for IRB review by all cooperating institutions
participating in the research project, including CDC IRB.
d. Serve as a consultant to the Steering Committee.
E. Application Content
Competing Applications
Use the information in the Program Requirements, Other Requirements, and Evaluation Criteria section
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the announcement and the Brrata Sheet in the application to develop the application content. Your
application will be evaluated on the uriteria listed, 60 it is important to follow them in laying out your
program plan.
The outcome of this program should provide reliable estimates of the prevalence, incidence and scoular
trends of the different types of childhood diabetes, and should enable the development of caso definition
characterization at diagnosis and follow-up of the different types of childhood diabetes. More specifical
the following questions should be answered:
1. Using existing data of known prevalent cases of childhood diabetes, how could prevalent cases be
classified, and what are the type-specific prevalence estimates and the characteristics (including
medical care received) of the different types of childhood diabetes?
2. Based on the extensive collection of new data, how could incident cases of childhood diabetes be
classified, and what are the accurate and precise population-based estimates of the type-specific
incidence and secular trends, and the characteristics (including medical care received) of the diffe
types of diabetes.
3. How could incident cases of childhood diabetes be followed in a uniform approach, and what are
characteristics, outcomes and quality of care at follow-up? How could a "pool" of incident cases
maintained for studying secular trends in incidence and factors associated with causation?
Emphasis should be on rigorous scientific approaches and methodologies that should yield access to
populations of diverse ethnicity, socioeconomic status and insurance coverage, produce reliable populat
based estimates that should adequately address ascertainment biases, and should assure sustainability to
provide data for secular trend assessment and follow-up for the different types of childhood diabetes.
Each applicant must describe the proposed populations, the methodology and study designs that best ad
the objectives of this program. as well as the networks and partnerships that should help achieve these
objectives. Applications should propose a uniform and multi-center approach, which considers the prob
of racial/ethnic health disparities.
Collaborative protocol(s) to study the above questions should be developed by a Steering Committee
composed of the recipients. The collaborative study protocol(s) should move into the implementation st
with the concurrence of the Steering Committee. It is not the intent of this Program Announcement to SO
elaborately detailed research plans for the above proposed collaborative project because the final protoc
should be collaboratively developed by the investigators during the planning phase (Phase n.
Eligibility characteristics must be clearly specified with appropriate documentation in the Application
Requirements section of your application.
The application narrative must include the following sections in the order presented below:
a. Description and rationale of (a) the population source (including size, age, ethnicity, medical insuranc
status, socio-economic status, geographic), and
b. The partnership/network(s) which will provide access to information on the cases within this populati
source (not to exceed 5 pages).
(1) When describing the population source, indicate the degree to which racial and ethnic minority
socio-economically disadvantaged populations are included, and how the population is sufficientl
typical of children with diabetes around the country or accurately represents special groups of chi
with the discase.
(2) When describing the partnership/network(s), detail the various types of providers which are
included.
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Withdrawal/Redaction Marker
Clinton Library
DOCUMENT NO.
SUBJECT/TITLE
DATE
RESTRICTION
AND TYPE
003. fact sheet
re: Type 1 Diabetes (partial) (1 page)
10/1999
P6/b(6)
COLLECTION:
Clinton Presidential Records
Domestic Policy Council
Devorah Adler
OA/Box Number: 20463
FOLDER TITLE:
Diabetes [Folder 2]
2012-0463-S
rc740
RESTRICTION CODES
Presidential Records Act - [44 U.S.C. 2204(a)]
Freedom of Information Act [5 U.S.C. 552(b)]
P1 National Security Classified Information [(a)(1) of the PRA]
b(1) National security classified information [(b)(1) of the FOIA]
P2 Relating to the appointment to Federal office [(a)(2) of the PRA|
b(2) Release would disclose internal personnel rules and practices of
P3 Release would violate a Federal statute [(a)(3) of the PRA|
an agency [(b)(2) of the FOIA]
P4 Release would disclose trade secrets or confidential commercial or
b(3) Release would violate a Federal statute [(b)(3) of the FOIA]
financial information |(a)(4) of the PRA]
b(4) Release would disclose trade secrets or confidential or financial
P5 Release would disclose confidential advice between the President
information [(b)(4) of the FOIA]
and his advisors, or between such advisors |a)(5) of the PRA]
b(6) Release would constitute a clearly unwarranted invasion of
P6 Release would constitute a clearly unwarranted invasion of
personal privacy [(b)(6) of the FOIA]
personal privacy |(a)(6) of the PRA]
b(7) Release would disclose information compiled for law enforcement
purposes |(b)(7) of the FOIA]
C. Closed in accordance with restrictions contained in donor's deed
b(8) Release would disclose information concerning the regulation of
of gift.
financial institutions |(b)(8) of the FOIA]
PRM. Personal record misfile defined in accordance with 44 U.S.C.
b(9) Release would disclose geological or geophysical information
2201(3).
concerning wells |(b)(9) of the FOIA]
RR. Document will be reviewed upon request.
Type 1 Diabetes Fact Sheet
More than one million Americans have Type 1 (juvenile) diabetes. It can occur at any age, but is most commonly diagnosed
in childhood. In Type I diabetes, a person's pancreas produces little or no insulin. Although the causes are not entirely
known, scientists believe the body's own immune system attacks and destroys insulin-producing cells in the pancreas.
Because insulin is necessary for life, people with Type 1 diabetes must take several insulin injections a day for the rest of
their lives.
The Truth About Type 1 Diabetes
AFFECTS YOUNG CHILDREN: It's one of the most costly, chronic diseases of childhood and one you never
outgrow.
INSULIN IS NOT A CURE: While insulin allows a person to stay alive, it does not prevent the complications of
diabetes, including blindness, heart attack, kidney failure, stroke, nerve damage, and amputations.
NEEDS CONSTANT ATTENTION: To survive, people with Type 1 diabetes must take multiple insulin injections
daily and test their blood sugar by pricking their fingers for blood six or more times per day. While trying to balance
insulin injections with their amount of food intake, people with Type 1 diabetes must constantly be prepared for
potential hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions which are life threatening.
OTHER FACTORS AFFECTING CONTROL: Despite rigorous attention to maintaining a healthy diet, exercise
regimen, and always injecting the proper' amount of insulin, many other factors can adversely affect a person's blood-
sugar control including: stress, hormonal changes, periods of growth, illness or infection and fatigue.
Statistics and Warning Signs
Life expectancy of people with diabetes averages 15 years less than people who don't have it.
Each year 30,000 Americans are diagnosed with Type 1, over 13,000 of whom are children. That's 35 children each
and every day.
Common symptoms of Type 1 diabetes include: excessive thirst, constant hunger, excessive urination; sudden weight
loss for no reason; rapid, hard breathing; sudden vision changes or blurry vision, drowsiness or exhaustion; fruity
odor on breath. These symptoms may occur suddenly.
What is it like to have Type 1 Diabetes?
Ask people who have Type 1 diabetes. It's difficult. It's upsetting. It's life threatening. It doesn't go away.
- Actress Mary Tyler Moore, JDF's International Chairman
"I've had Type 1 diabetes for over 30 years. It changes everything about a child's and a family's life. And to add
to the day-in, day-out hassles of living with diabetes - the balancing of diet, exercise, and insulin, the shots, the
terrible episodes of low blood sugar, the weird feelings of high blood sugar - is the knowledge that even if you do
all you can to be as normal as possible, you're not, you're different, and you face the uncertainty of an adulthood
visited upon by early blindness, kidney failure, amputation, heart attack or stroke."
P6/(b)(6)
[003]
My grandmother died, along with many other family members who had diabetes. I am terrified of dying from
diabetes.
P6/(b)(6)
I could become blind, have a heart attack or kidney disease. When I get old, I might even have to get an
amputation. If there's a cure, then I don't have to worry."
P6/(b)(6)
"Even though I work really hard at controlling my blood sugar, I can't do it perfectly and when I am high I feel
lousy and when I am low I feel terrible and can't think straight or concentrate."
JDF is the world's leading nonprofit, nongovernmental funder of diabetes research. It was founded in 1970 by parents of
children with diabetes. JDF's mission is to find a cure for diabetes and its complications through the support of research, and
since its inception has given more than $326 million to diabetes research worldwide. For more information visit our website
at www.jdf.org or call 800-JDF-CURE.
Revised October 1999