Download Type 1 Diabetes

The Path to a Cure for
Type 1 Diabetes
My Story
Diabetes is with me
every minute of
every day.
1
My hope for a cure
lies in research.
2
Until there is a cure, I need
good health care to stay healthy.
Please Help Families Like Us:
3
1. C
o-sponsor legislation to renew
the Special Diabetes Program
and prevent a 35% cut in diabetes
research funding.
2. S
upport health reform efforts that
would help kids like me get the
care we need until there is a cure.
Since its creation in 1997, the Special Diabetes Program (SDP) has helped the diabetes research community
make tremendous progress. The landmark program has produced tangible results and real returns on the
federal investment; there are now significant research opportunities that will help improve the lives of those
living with diabetes, prevent onset of the disease in others, and bring us closer to a cure. The benefits we
have already seen and those that we are poised to achieve for individuals with diabetes demand that we
strengthen this successful program. A timely, multi-year renewal of this program is necessary for the National
Institutes of Health (NIH) to ensure continuity of research and plan long-term clinical trials.
NIH Funding for Type 1 Diabetes
A Unique Research Funding Stream
500
Funding (in millions of dollars)
The Special Diabetes Program is special and
unique because it provides a mandatory
funding stream for type 1 diabetes research
to supplement annually-appropriated funds.
Currently, the Special Diabetes Program
provides $150 million in federal funding for
type 1 diabetes research. Failure of
Congress to reauthorize the Special
Diabetes Program would mean a 35% drop
in federal funding for type 1 diabetes, from
approximately $433 million in FY2011 to
approximately $283 million beginning in FY
2012.
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433
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400
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283
200
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2012
What We Stand to Lose
Due to the Special Diabetes Program, the federal government and JDRF have made dramatic strides in type 1
diabetes research. A vigorous and focused research agenda that capitalizes on progress to date and translates
basic science into clinical applications can reduce or ultimately eliminate the burden of type 1 diabetes on
individuals, their families and society. But without congressional reauthorization of the Special Diabetes
Program, we will see much of the promising research delayed or halted completely, such as:
•
•
•
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Type 1 Diabetes Genetics Consortium (T1GDC) and the Environmental Determinants of Diabetes in the
Young (TEDDY) Study: Funded entirely by the SDP, these large, collaborative clinical studies are
answering the fundamental questions of what causes type 1 diabetes.
Clinical Islet Transplantation Consortium: Funded entirely by the SDP, this consortium performs multicenter, phase III trials that will lead to FDA licensure of islet cell transplantation therapy.
Diabetes Research in Children Network (DirecNet): The SDP funds 80 percent of DirecNet, which fills a
critical research gap by testing and validating new diabetes management technologies in children.
Beta Cell Biology Consortium: The SDP provides approximately 65 percent of the funding for this
international collaboration, which focuses on understanding the development and function of the
pancreatic beta cells, with the goal of developing a cell-based therapy for insulin delivery.
The Juvenile Diabetes Research Foundation (JDRF) supports efforts to reform the healthcare system and applauds
Congress and the Administration for prioritizing such efforts. Diabetes places a tremendous burden on the nation’s economy
and the quality of life for individuals with the disease. According to the Centers for Disease Control, an estimated 24 million
children and adults in the U.S. live with diabetes.1 Diabetes expenditures account for $174 billion per year in direct medical
costs and indirect costs such as disability, work loss, and premature mortality.2 Nearly one-third of every Medicare dollar is
spent on people with diabetes.3
The Diabetes Control and Complications Trial conducted by the National Institutes of Health showed that keeping blood
glucose levels as close to normal as possible slows the onset and progression of costly complications such as eye, kidney
and nerve damage caused by diabetes.4 The Federal government and JDRF recognize this and are making dramatic strides
in diabetes research, which is improving the lives of those with diabetes by preventing or delaying the onset of the disease
and complications, as well as moving us closer to our goal of a cure. However, until there is a cure, better management of
diabetes is needed to complement the research effort and mitigate the escalating costs and burden on individuals with
diabetes and the nation’s economy. As part of overall healthcare reform, JDRF strongly supports and will advocate for the
following principles that will help children and adults living with type 1 diabetes:
1. Adequate & Affordable Health Insurance Coverage without Pre-existing Condition Exclusions or Penalties
Health insurance coverage is a critical issue for people of all ages who have type 1 diabetes. Those with private coverage
face the constant threat of being dropped from their carrier or not being able to afford their coverage due to their type 1
diabetes diagnosis. In coverage transitions -- such as young adults aging off of their parents’ policy, people with a break of
63 days or more in coverage, and individuals moving out of Medicaid or State Children’s Health Insurance Program eligibility
-- insurance companies may not cover pre-existing conditions or may restrict their coverage. In addition, health insurance
under COBRA may or may not be available for individuals who lose their job and COBRA may be cost prohibitive for many
people in this situation. To help bridge the gap, people with type 1 diabetes must be able to obtain adequate and affordable
health insurance.
2. Access to Treatment & Technology
Clinical research shows that even vigilant patients who check their blood glucose frequently spent less than 30 percent of the
day in the normal glucose range.5 Improved access to treatments and technologies to better control blood glucose may cost
more initially, but with widespread adoption will over time reduce the risk of diabetes complications and the related burden on
our health care system. At the same time, a regulatory system that continues to protect patients without stifling the
development of life saving technologies is essential to the success of managing diabetes and its costs in the future.
3. Adoption of Health Information Technology with Patient Privacy Protections
Human clinical trials are the final phase of research before a new drug or treatment is approved for the market. The adoption
of health information technologies can help advance human clinical trials by automating the collection of clinical data and
facilitating the reporting of new incidences of type 1 diabetes. In addition, adoption of health information technologies will
improve the quality and coordination of patient care, but it must be done with clear protections to ensure that patient privacy
is maintained.
4. Appropriate Education and Payment for Endocrinologists & Diabetes Care Providers
The healthcare workforce is facing a severe shortage of endocrinologists and other diabetes care providers as the incidence
of diabetes and the therapeutic options are growing rapidly. In the current system, the comprehensive diabetes care
provided for patients on intensive insulin therapy is reimbursed at a level of a routine office visit. However, such care
involves evaluations which far exceed the routine office visit, such as intensive self-management training, continuous glucose
monitor teaching and downloads, individual phone or email consultations, and other services. As expected, the disincentives
which currently exist have created a shortage of diabetes care specialists, which is only expected to increase in the future.
Adequate reimbursement for services provided and funding for professional education, residencies, and fellowships are
needed to encourage students to enter the field of diabetes care.
1
Centers for Disease Control. Number of People with Diabetes Increases to 24 Million. CDC, June 24, 2008.
T. Dall, S. Mann, Y. Zhang, J. Martin, J. Chen, P. Hogan. Economic Costs of Diabetes in the U.S. in 2007. Lewin Group Inc. 2008.
3
Center for Medicare and Medicaid Services” http://www.cms.hhs.gov/CCIP/.
4
http://diabetes.niddk.nih.gov/dm/pubs/control/
5
Bode BW, Schwartz S, Stubbs H, et. al., 2005. Glycemic Characteristics in Continuously Monitored Patients With Type 1 & Type 2 Diabetes, Diabetes Care 28: 2361-66.
2