[Senate Hearing 114-653]
[From the U.S. Government Publishing Office]
DEPARTMENT OF DEFENSE APPROPRIATIONS FOR FISCAL YEAR 2017
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U.S. Senate,
Subcommittee of the Committee on Appropriations,
Washington, DC.
NONDEPARTMENTAL WITNESSES
[Clerk's note.--The subcommittee was unable to hold
hearings on nondepartmental witnesses. The statements and
letters of those submitting written testimony are as follows:]
Prepared Statement of Crohn's and Colitis Foundation of America
Chairman Thad Cochran, Ranking Member Durbin, and distinguished
members of the Subcommittee, as you begin to craft the fiscal year 2017
Defense appropriations bill, the Crohn's and Colitis Foundation is
pleased to submit this statement for the record asking you to provide
$250 billion for the Department of Defense (DOD) Peer Reviewed Medical
Research Program in addition to listing inflammatory bowel diseases
(IBD) as a condition for study within the program as it has
historically been included since 2008. These actions will ensure
further advancements in understanding the linkage between active
service and IBD and how to prevent or effectively treat these
debilitating diseases.
crohn's and colitis foundation of america
The Crohn's & Colitis Foundation is the only national nonprofit,
voluntary health organization dedicated to the fight against IBD. Its
mission is to cure and prevent Crohn's disease and ulcerative colitis,
and to improve the quality of life of children and adults affected by
these diseases.
The Foundation's Research Program has four major goals:
1) Identity and fund the best peer-reviewed, investigator-
initiated research in IBD;
2) Provide money that allows investigators to generate enough
preliminary data to compete for funding from the National
Institutes of Health (NIH);
3) Encourage outstanding investigators to choose a career in IBD
research; and
4) Discover and support emerging areas of research that enhance
our understanding of the causes and disease course of IBD.
Each year, the Foundation's National Scientific Advisory Committee
(NSAC) which is comprised of thought leaders in IBD, conducts a peer
review--modeled after that of the NIH--of more than 250 grant
applications annually from all over the world. Grants are awarded
strictly on the basis of scientific merit and relevance to Crohn's
disease and ulcerative colitis. Through this process, the Crohn's &
Colitis Foundation is able to fund only the very best IBD research in
the world. The Foundation has played a role in many breakthroughs that
have improved the lives of IBD patients. Of particular mention is the
initial research study that led to the discovery of Remicade, the only
biologic drug available for both Crohn's disease and ulcerative
colitis. The Foundation was also integral in funding work that led to
identifying the first gene linked to Crohn's Disease, NOD/CARD15.
department of defense research activities
CCFA requests that IBD be listed as a condition eligible for study
in the Peer-Reviewed Medical Research Program in the fiscal year 2017
DOD Appropriations Bill.
The Peer Reviewed Medical Research Program (PRMRP), established in
fiscal year 1999, has supported research across the full range of
science and medicine, with an underlying goal of enhancing the health
and well-being of military Service members, Veterans, retirees, and
their family members. Program oversight is provided by a program review
panel with joint military service and interagency representation. IBD
has been listed consistently as a condition in the program since 2008.
Throughout history, military medical personnel have pioneered
breakthroughs in response to war time needs, benefitting service
members and civilians alike. The PRMRP is committed to funding research
with the potential to profoundly impact the development and
implementation of medical devices, drugs, and clinical practice
guidelines that will enhance the precision and efficacy of diagnosis
and treatment across the spectrum of healthcare settings.
ibd prevalence increases in va, uc more common
The prevalence of Crohn's Disease and Ulcerative Colitis
(collectively known as IBD) increased by two to threefold among
veterans from 1998 to 2009. Researchers found nearly 17,000 unique
incident cases of Crohn's Disease and over 26,000 cases of Ulcerative
Colitis within the military population during this time. Due to the
population studied, 94 percent of the cases were in men.\1\ In 2009,
the age and gender standardized prevalence rate of Crohn's Disease was
287 per 100,000 VA users and the prevalence rate for Ulcerative Colitis
was 413 per 100,000 VA users.\1\ Despite having a large population
study, much is yet to be known about etiology or cause of these
diseases, therefore continued research in this area is necessary to
advance knowledge about IBD.
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\1\ Hou JK, Kramer JR, Richardson P, Mei M, El-Serag HB. The
Incidence and Prevalence of Inflammatory Bowel Disease Among U.S.
Veterans: A National Cohort Study. Inflamm Bowel Dis. 2013 Feb 27.
[Epub ahead of print] PubMed PMID: 23448789.
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It is important to recognize that by increasing the Federal
commitment to IBD research, we can improve the health of those brave
Americans who serve in uniform and are suffering from inflammatory and
gastrointestinal disorders. Gulf War illness and IBD have a
disproportionate impact on active-duty U.S. Armed Forces and among
Veterans. Certain environmental stressors are found to trigger an
episode.
In order to identify the etiology of these disease, robust funding
is needed at a level of $250 million in fiscal year 2017 so that
advancements in this area can continue to be made. Thank you for the
opportunity to submit the views of the Crohn's and Colitis community.
Please do not hesitate to contact us should you have any questions or
require additional information.
______
Prepared Statement of Dystonia Advocacy Network
Chairman Cochran and distinguished members of the Subcommittee,
thank you for the opportunity to submit testimony on dystonia. On
behalf of the community of individuals affected by dystonia and the
Dystonia Advocacy Network, we request that ``dystonia'' continue to be
included as a condition eligible for study in the Department of Defense
(DOD) Peer-Reviewed Medical Research Program (PRMRP) in fiscal year
2017.
about dystonia
Dystonia is characterized by persistent or intermittent muscle
contractions causing abnormal, often repetitive, movements, postures,
or both. The movements are usually patterned and twisting, and may
resemble a tremor. Dystonia is often initiated or worsened by voluntary
movements, and symptoms may ``overflow'' into adjacent muscles.
Dystonia is classified by: 1. clinical characteristics (including age
of onset, body distribution, nature of the symptoms, and associated
features such as additional movement disorders or neurological
symptoms) and 2. Cause (which includes changes or damage to the nervous
system and inheritance). Doctors use these classifications to guide
diagnosis and treatment.
about the foundation
The mission of the DMRF is to advance research for more treatments
and ultimately a cure, to promote awareness and education, and to
support the needs and well-being of affected individuals and families.
The membership of the DMRF is comprised of individuals living with all
forms dystonia, their friends and families, donors, healthcare
professionals, and researchers, uniting people of all backgrounds and
abilities to better serve those living with dystonia.
The Patient Perspective
``In 1975 I was in the Tennessee National Guard. I was riding in a
personnel carrier, which is like a small tank. The driver was not
watching where he was going and drove into a 14-foot ditch, straight
down. I had a helmet on which probably saved my life. I got slammed
into the wall, and it knocked the helmet off. My shoulder took most of
the impact but it definitely hurt my neck quite a bit. I didn't have
any use in my right arm for some time. Later on, I noticed my head was
turning to the left. I went to the doctor and of course they didn't
know what it was. Time progressed and it started to get worse. My head
was pulling to the left, which made it very difficult to drive a car.
Sometimes I sat sideways in the seat to do so. I finally went to some
neurologists locally and they diagnosed it as torticollis [cervical
dystonia]. At that time there wasn't a lot of botulinum toxin going
around, so to speak, so they sent me to a center in Nashville. I tried
botulinum toxin injections two or three times and then had a bit of a
reaction and it didn't seem to help a whole lot.''
Johnny McCoy is a U.S. Army Veteran who acquired cervical dystonia
after a service-related injury.
conclusion
Medical literature associates the onset of dystonia with traumatic
injury, particularly traumatic head/brain injuries. Our men and women
in uniform face a disproportionate risk of developing dystonia as a
result of an injury sustained during their military service. Over
recent years, the PRMRP has funded many dystonia research projects that
have been crucial to increasing our scientific understanding of this
condition. In the interest of further improving care for our dystonia-
affected veterans, please once again support the inclusion of dystonia
as a condition eligible for study through the PRMRP during the fiscal
year 2017 appropriations process.
We appreciate that the Defense Appropriations Subcommittee and the
Senate play important roles in crafting the annual eligible conditions
list. The dystonia community urges you to continue inclusion of
``dystonia'' as a condition eligible for study through the PRMRP within
the Committee Report accompanying the fiscal year 2017 Defense
Appropriations Bill.
Thank you again for your time and your consideration of the
dystonia community's requests.
______
Prepared Statement of GBSCIDP Foundation International
Chairman Cochran and distinguished members of the Subcommittee,
thank you for the opportunity to submit testimony on GBS. On behalf of
the community of individuals affected by Guillain-Barre Syndrome (GBS)
and the GBSCIDP Foundation International, we request that
`Guillain-Barre Syndrome (GBS)' be included as a condition eligible for
study in the Department of Defense (DOD) Peer-Reviewed Medical Research
Program (PRMRP) in fiscal year 2017.
about guillain-barre syndrome
GBS is an inflammatory disorder of the peripheral nerves outside
the brain and spinal cord. It is characterized by the rapid onset of
numbness, weakness, and often paralysis of the legs, arms, breathing
muscles, and face. Paralysis is ascending, meaning that it travels up
the limbs from fingers and toes towards the torso. GBS can occur as an
inappropriate immune system response to something as familiar as
stomach flu where the body's immune system ends up attacking the
nervous system. GBS can be life-threatening and hospitalization
followed by prolonged and difficult recovery is often required.
about the foundation
The GBSCIDP Foundation International is the preeminent
global non-profit organization supporting individuals and their
families affected by Guillain-Barre syndrome (GBS), chronic
inflammatory demyelinating polyneuropathy (CIDP), and related syndromes
such as multifocal motor neuropathy (MMN) through a commitment to
support, education, research, and advocacy.
the patient perspective
``My name is Michelle Mahurin and I am a GBS survivor.
I was an active duty member of the United States Air Force for 20
years when I contracted GBS in June of 2013. On June 13th, 2013, I
became violently ill from a bad case of food poisoning. On June 21st, I
began experiencing my first symptoms of GBS. On 24 June, I was finally
admitted to the hospital. By 28 June, I was completely paralyzed and
had gone into respiratory failure. I spent the next 10 days in the ICU
before I was able to breathe on my own and was transferred to the in-
patient rehabilitation wing in the hospital. It was there that I began
to receive intense therapy, (5-6 hours a day, 6 days a week), that
consisted of speech therapy (ST), occupational therapy (OT), and
physical therapy (PT). On August 12th, I was finally discharged from
the hospital and have since continued in various therapy programs for
PT, OT and ST--to include Voice Therapy that I am currently receiving.
During the course of my recovery, I literally had to re-learn how
to take care of myself. From the basics of being able to sit up on the
side of the bed, to feeding and dressing myself, to being able to walk
again and eventually being able to drive again. While I was recovering,
I relied on my family to assist me with day-to-day tasks and to drive
me to my various appointments.
On December 29, 2014 I was medically retired from the Air Force due
to my GBS. Since being retired, I have been fortunate to be able to
return back to working full time. However, it has not been an easy task
for me. Even though I am considered recovered, I am not at the same
level that I was prior to contracting GBS. I still battle through
various residuals: neuropathy pain, fatigue/muscle weakness, occasional
loss of balance, facial palsy, and weakened vocal cords. At one point,
my fatigue was a constant battle; I didn't have any Quality of Life,
(QoL), and honestly had considered quitting work. I expressed my
concerns with my neurologist, who in turn, prescribed me
Methylphenidate to help me with my fatigue. This medication does not
eliminate my fatigue, but does increase my QoL by allowing me to be
able to function in day-to-day activities and enjoy my family.
As you craft the fiscal year 2017 Department of Defense
Appropriations Bill, I ask that you work with your colleagues to
include ``Guillain-Barre Syndrome (GBS)'' as a condition eligible for
study through the PRMRP. On behalf of all Guillain-Barre Syndrome-
affected constituents, thank you for your consideration of my
request.''
-- Excerpt from ``My GBS Story'', Michelle L. Mahurin, GS-09, DAF,
Budget
Analyst, 57th Maintenance Group, Nellis Air Force Base, NV.
``In 2012, I contracted Guillain-Barre Syndrome (GBS), a rare
disease in which the immune system attacks the nerves. Most Doctors
still have no experience with GBS, and in my case in a regional coastal
hospital, they spent valuable days believing it to be end stage cancer.
After finding no cancer, a neurologist was brought in, who diagnosed
GBS, which led to my being flown to a major University Hospital. At the
time, I was paralyzed from the neck down, on a ventilator and feeding
tube, in a coma, and predicted to die.
UNC Hospitals, using IVIg, doubled, brought me out of acute danger,
and I have spent the time since then recovering. While I am 71, and was
perhaps impacted more than a 21 year old, I believe it mistaken for
major medical institutions to state that most make a full recovery. It
would appear the definition of `full recovery' might mean simply being
able to function, at a survival level. I spent 3 years performing
Physical Therapy two to three times per week, and can now walk, if
somewhat awkwardly. Upon finally walking without a cane, I made plans
to enter Nursing School. From January, 2015, until May, 2015, when I
entered Nursing School, my PT and I worked directly on being able to
have the type of physical skills demanded by Nursing. In December,
2015, I am proud to say that I earned a Certificate, and North Carolina
License, as a CNA, the lowest level of Licensed Nursing! I remain in
Nursing, headed to a RN, I hope, but it is very difficult. I love
working with patients, as I am able!
I am now a Veteran's Administration patient, for which I'm happy.
The VA may have the greatest expertise in nerve injuries, and it is my
understanding that the VA was one of the original American institutions
to recognize GBS, decades ago. Little is known about GBS, and the
family of damaged nerve diseases. My own case fits neither the Acute
GBS model, nor the Chronic GBS model, with my having multiple GBS
attacks, while gradually recovering overall. The VA is working with my
unique situation to find the best treatment regimen for me. Any
Research could go a long way in helping Veterans and non-Veterans
alike.''
-- Excerpt from ``My GBS Story'', Tim (Thomas E.) Hubbard, BSE, JD,
CNA USMC 1963-68.
conclusion
Medical literature has found that GBS occurs at a higher rate in
U.S. military personnel than the general population. Military
personnel, particularly deployed personnel, face an elevated risk of
infections, viruses, and other potential triggers for GBS. The PRMRP
has been incredibly successful in supporting meaningful research
projects for other conditions that disproportionately impact military
personnel and occur as a result of military service.
We appreciate that the Defense Appropriations Subcommittee and the
Senate play important roles in crafting the annual eligible conditions
list. The GBS community urges you to include ``Guillain-Barre Syndrome
(GBS)'' as a condition eligible for study through the PRMRP within the
Committee Report accompanying the fiscal year 2017 Defense
Appropriations Bill.
Thank you again for your time and your consideration of the GBS
community's requests.
______
Prepared Statement of Human Factors and Ergonomics Society
On behalf of the Human Factors and Ergonomics Society (HFES), we
are pleased to provide this written testimony to the Senate
Appropriations Subcommittee on Defense and Related Agencies for the
official record. HFES urges the Subcommittee to provide robust funding
levels for Research, Development, Test, and Evaluation (RDT&E) at the
Department of Defense (DOD) in the fiscal year 2017 appropriations
process.
HFES and its members recognize and appreciate the challenging
fiscal environment in which we as a nation currently find ourselves;
however, we believe strongly that investment in scientific research
serves as an important driver for innovation and the economy and for
maintaining American global competitiveness. We thank the Subcommittee
for its longtime recognition of the value of scientific and engineering
research and its contribution to innovation in the U.S.
the value of human factors and ergonomics science
HFES is a multidisciplinary professional association with over
4,500 individual members worldwide, including psychologists and other
scientists, engineers, and designers, all with a common interest in
designing safe and effective systems and equipment that maximize and
adapt to human capabilities.
For over 50 years, the U.S. Federal Government has funded
scientists and engineers to explore and better understand the
relationship between humans, technology, and the environment.
Originally stemming from urgent needs to improve the performance of
humans using complex systems such as aircraft during World War II, the
field of human factors and ergonomics (HF/E) works to develop safe,
effective, and practical human use of technology. HF/E does this by
developing scientific approaches for understanding this complex
interface, also known as ``human-systems integration.'' Today, HF/E is
applied to fields as diverse as transportation, architecture,
environmental design, consumer products, electronics and computers,
energy systems, medical devices, manufacturing, office automation,
organizational design and management, aging, farming, health, sports
and recreation, oil field operations, mining, forensics, and education.
With increasing reliance by Federal agencies and the private sector
on technology-aided decisionmaking, HF/E is vital to effectively
achieving our national objectives. While a large proportion of HF/E
research exists at the intersection of science and practice--that is,
HF/E is often viewed more at the ``applied'' end of the science
continuum--the field also contributes to advancing ``fundamental''
scientific understanding of the interface between human decisionmaking,
engineering, design, technology, and the world around us. The reach of
HF/E is profound, touching nearly all aspects of human life from the
healthcare sector, to the ways we travel, to the hand-held devices we
use every day.
human factors and ergonomics at the department of defense
HFES and its members believe strongly that Federal investment in
DOD will have a direct and positive impact on the U.S. economy,
national security, and the safety and well-being of Americans. It is
for these reasons that HFES supports robust funding for DOD, especially
for the Army Human Factors Engineering Technology applied research
program and the Navy Personnel, Training, Simulation, and Human Factors
program within Engineering and Manufacturing Development to encourage
further advancements in the fields of technology, safety, and human
factors, among others.
DOD has openly acknowledged the significance of human factors
research and the potential for interagency collaboration through the
creation of the Department of Defense Human Factors Engineering
Technical Group (DOD HFE TAG). Composed of representatives from DOD,
National Aeronautical and Space Association (NASA), Federal Aviation
Administration (FAA), and the Department of Homeland Security (DHS),
the scope of this working group is broad and its benefits are diverse.
In particular, the goals of DOD HFE TAG are to:
--Provide a mechanism for the timely exchange of technical
information in the development and application of human factors
engineering.
--Enhance coordination among government agencies involved in HF/E
technology research, development, and application.
--Assist in the preparation and coordination of tri-service
documents, and sponsor in-depth interaction, which aids in
identifying HF/E technical issues and technology gaps.
This research undoubtedly affects the safety and well-being of
American citizens and it is for this reason that we request robust
funding levels for human factors research in DOD in fiscal year 2017.
conclusion
Given DOD's critical role in supporting fundamental research and
development across defense and engineering disciplines, HFES supports
robust funding levels for DOD RDT&E programs, especially those that
specifically fund human factors, in fiscal year 2017. These investments
fund important research studies, enabling an evidence base,
methodology, and measurements for improving organizational function,
performance, and design across sectors and disciplines.
On behalf of HFES, we would like to thank you for the opportunity
to provide this testimony. Please do not hesitate to contact us should
you have any questions about HFES or HF/E research. HFES truly
appreciates the Subcommittee's long history of support for scientific
research and innovation.
[This statement was submitted by William S. Marras, Ph.D., CPE,
President and Lynn Strother, Executive Director, Human Factors and
Ergonomics Society.]
______
Prepared Statement of Interstitial Cystitis Association
Chairman Cochran and distinguished members of the Subcommittee,
thank you for the opportunity to submit testimony on interstitial
cystitis. On behalf of the community of individuals affected by
interstitial cystitis (IC) and the Interstitial Cystitis Association,
we request that ``interstitial cystitis (IC)'' continue to be included
as a condition eligible for study in the Department of Defense (DOD)
Peer-Reviewed Medical Research Program (PRMRP) in fiscal year 2017.
about interstitial cystitis
Interstitial Cystitis (IC) is a chronic bladder condition affecting
4 to 12 million people in the U.S. We often say that interstitial
cystitis is as hard to say as it is to live with. It is also called IC,
painful bladder syndrome (PBS), bladder pain syndrome (BPS), and
chronic pelvic pain (CPP).
about the foundation
The Interstitial Cystitis Association (ICA) advocates for research
dedicated to discovery of a cure and better treatments, raises
awareness, and serves as a central hub for the healthcare providers,
researchers and millions of patients who suffer with constant urinary
urgency and frequency and extreme bladder pain called IC, or
interstitial cystitis.
the patient perspective
``I am writing to advocate for the inclusion of Interstitial
Cystitis as a condition eligible for research funding through the
Department of Defense's Peer Reviewed Medical Research Program.
I know I can't speak for all IC patients, but from what I have
read, I believe it to be indicative of what almost all IC patients go
through. I was diagnosed with IC in my early 20's (although the onset
of symptoms can start at any age) and since then my life has been
almost exclusively ruled by this condition. When I was in high school I
dreamed of a career in the military, but by the time I graduated from
the ROTC program, my dreams were over. After going to the ER too many
times to count complaining of abdominal pain and frequent urination
(every hour, 24 or more times a day), I was sent to doctor after doctor
until I was finally diagnosed with IC. This process took almost 2 years
because there is NO definitive test for IC. So they had to rule out
EVERYTHING else, before they could tell me what I had.
Life did not improve after diagnosis because IC has NO CURE!
Instead IC patients like myself have to change their entire WAY of life
in order to achieve any QUALITY of life. The first thing I would like
to address is the unremitting pain that I experience every day. This is
every conscious moment of every single day. This is accompanied by
urgency, frequency of urination, and sometimes incontinence, which
makes traveling even short distances difficult. There are several
things that you take for granted that I can no longer do. Because this
condition affects my bladder lining, I have a very restrictive diet so
I have to be very careful of what restaurants I go to. Going to the
movies is almost impossible because I have to get up at least 3-4 times
during the film. Walking any long distances is jarring for my bladder
and increases pain, so even casual exercise or outdoor excursions are
difficult for me. Even something as simple as visiting my family can be
almost impossible, so they have to come to me. I have a very
understanding husband, but intimacy is painful and I worry about the
long term impact IC will have on my marriage, much less the ability to
start a family. I am lucky because I do not have to work, but if I had
to, I am not sure it would even be possible.
I know you are probably wondering why I am so miserable all the
time? You probably are saying, why doesn't she get treatment for this
condition. The truth is I do, but there really isn't much out there
that helps. Diet, over-the-counter medications, and stress reduction
are first line treatments according to the American Urological
Association, but they barely help. Elmiron is the only FDA approved
medication for IC, but because of recent changes to prescription
coverage brought on by Obamacare, a 1 month supply now costs $600 and
is unaffordable. This medication can take up to 6 months to work, has a
huge side effect profile, and only works for about half the patients
who take it. I am currently under the care of a pain management doctor
for pain, a psychiatrist for depression, and an urologist who does
installations (putting medication directly into my bladder by
cauterization). All this is done just so I have the motivation to wake
up in the morning.
IC does not discriminate on sex, race, or age. It can strike anyone
at any time, including those who have or are currently serving in the
military. If we are to defend this country with as many people as
possible, we need to put this chronic disease behind us. My life, and
those of all IC patients is not one that we chose. However, it is up to
YOU to make the choice to help us find an easier way for doctors to
make a diagnosis, better treatment options so we can be productive
citizens, and if luck is on our side, ultimately find a cure by
allotting funding for IC in the next fiscal year.''
--A Hopeful IC Warrior
conclusion
IC is becoming increasingly prevalent among active personnel and
veterans and is associated with post-traumatic stress disorder. DOD
supports important research on medical conditions that impact military
personnel, their families and veterans through the Peer-Reviewed
Medical Research Program. Congress has historically included IC in the
list of eligible conditions for research under this program and IC
researchers compete successfully each year.
We appreciate that the Defense Appropriations Subcommittee and the
Senate play important roles in crafting the annual eligible conditions
list. The IC community urges you to continue inclusion of
``interstitial cystitis (IC)'' as a condition eligible for study
through the PRMRP within the Committee Report accompanying the fiscal
year 2017 Defense Appropriations Bill.
Thank you again for your time and your consideration of the IC
community's requests.
______
Prepared Statement of NephCure Kidney International
Chairman Cochran and distinguished members of the Subcommittee,
thank you for the opportunity to submit testimony on FSGS. On behalf of
the community of individuals affected by focal segmental
glomerulosclerosis (FSGS) and NephCure Kidney International, we request
that ``focal segmental glomerulosclerosis (FSGS)'' continue to be
included as a condition eligible for study in the Department of Defense
(DOD) Peer-Reviewed Medical Research Program (PRMRP) in fiscal year
2017.
about focal segmental glomerulosclerosis
Focal Segmental Glomerulosclerosis (FSGS) is a disease that attacks
the kidney's filtering system (glomeruli) causing serious scarring.
FSGS is one of the many causes of Nephrotic Syndrome, which occurs when
valuable protein in the blood leaks into the urine (proteinuria). FSGS
can cause end-stage renal disease (ESRD), at which point patients
require dialysis or a kidney transplant. There is no cure and few
treatments for FSGS, and it returns in approximately 30-40 percent of
patients who receive kidney transplants.
about the foundation
NephCure Kidney International is the only organization committed
exclusively to support research seeking the cause of the potentially
debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS)
and the diseases that cause Nephrotic Syndrome, improve treatment, and
find a cure.
the patient perspective
``I was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) in
July 2007 while serving in the U.S. Air Force Reserves. Previously,
from January 2001--2007 (deployed for Operation Enduring Freedom in
2005), I had served on Active Duty with the U.S. Air Force. In 2007,
while a patient at the VA Medical Center Dallas, my GFR was 31, and
they decided to do a biopsy, which led to the diagnoses of FSGS.
Due to the decline of kidney function, I was placed on TDRL in
October 2008 and was medically retired (PDRL) with 100 percent in May
2012 as an Air Force Staff Sergeant (E-5). My plans were to remain in
the Air Force until retirement, however due to FSGS, this was not
possible. It was a change for me to have to put the uniform in the
closet and know that it was going to remain there.
In May 2009 my kidney function had deteriorated to a GFR of 15, and
at that time I began hemodialysis treatments (in-center) on Mondays,
Wednesdays, & Fridays for 4 hours per session. Due to sepsis,
pericarditis, and other issues from dialysis, I was a frequent patient
at the hospital; one visit lasted 1.5 months, most of which was in the
Intensive Care Unit (ICU).
Luckily, on January 1, 2013, I received a kidney transplant and
have been doing pretty well since. However with FSGS the threat remains
that it could affect my transplanted kidney, thus returning me to
dialysis treatments until I could receive another kidney transplant. I
urge your committee to fund research for FSGS so that other service
members and civilians do not have to go through the illnesses and pains
of being on dialysis and the worries of the families they have caring
for them.''
--Anthony C. Whalen, SSgt, USAF (Ret)
``I volunteered for the draft in 1970 and entered the army on June
22, 1970. At that time I had protein in my urine but did not know what
that meant. After discharge in 1972 my blood pressure was elevated and
I still had protein in my urine. By 1981 my pressures remained high and
I was referred to a nephrologist who did a biopsy confirming a
diagnosis of Focal Glomerulosclerosis which they now call FSGS.
I received a kidney from my brother on April 30, 1987, that puts me
out soon to be 29 years. I returned to work as a VA nurse 3 months
after transplant and continue to work today at Peterson Regional
Medical Center in Kerrville, Texas. I am proud to have served in the
army and thank God for my brother and the opportunity to be
transplanted. Help us fight FSGS--it is an insidious, life taking
illness. A cure can be found. Funding research will help keep people
working, paying taxes and keep them off dialysis.''
--Kent Bressler
conclusion
FSGS is a rare and devastating kidney disease that is a leading
cause of end-stage renal disease (ESRD). Nearly 30,000 veterans suffer
from ESRD and an additional 3,000 veterans are expected to reach ESRD
each year with significant health disparities among African American
due to variants of the APOL1 gene. In addition, researchers suggest
there are new opportunities for investigating FSGS in the military
population with respect to environmental exposures. More needs to be
done to improve our understanding of the impact of FSGS among our
military personnel and veterans.
We appreciate that the Defense Appropriations Subcommittee and the
Senate play important roles in crafting the annual eligible conditions
list. The FSGS community urges you to continued inclusion of ``focal
segmental glomerulosclerosis (FSGS)'' as a condition eligible for study
through the PRMRP within the Committee Report accompanying the fiscal
year 2017 Defense Appropriations Bill.
Thank you again for your time and your consideration of the FSGS
community's requests.
______
Prepared Statement of Kathleen Prout, Military Surviving Spouse
Advocate
This testimony is prepared for the Senate Appropriations Committee,
Subcommittee on Defense, regarding Appropriations for NDAA17, Outside
Public Witness, March 18, 2016.
My name is Kathleen Prout of Coronado, CA. I am an active duty Navy
surviving spouse in receipt of partial payment of SBP due to the DIC
offset and DIC. I also am a volunteer survivor advocate and have been
working on the elimination of the SBP-DIC Offset for 10 years. While my
statement is personal, it is representative of all 63,000 SBP-DIC
Offset surviving spouses. My purpose is to seek successful passage of S
979, a bill sponsored by Senator Bill Nelson, FL and Senator Susan
Collins, ME.
My late husband, Rear Admiral James G. Prout III, USN, was serving
in his 30th year in the Navy as the Battle Group Commander of Cruiser-
Destroyer Group 3 with the USS Carl Vinson, CVN 70 as his flag ship,
when the F-18 in which he was a passenger crashed while on official
business. He was killed, and in a moment, my family's life changed
forever. While family and friends were supportive, my children and I
were left to go through the painful lifelong grief process. I was
saddened and shocked to discover that the Navy, the military and the
Department of Defense were far less supportive.
The Survivor Benefit Plan (SBP), a benefit my late husband earned,
was not paid to me in full. When he died, I was told I would only be
getting a fraction of the benefit he earned by serving his country for
30 years. The Casualty Assistance Officer explained that the Department
of Defense's SBP is offset dollar for dollar by the amount of
Dependency and Indemnity Compensation (DIC) paid by the Veterans
Administration. DIC is paid to surviving spouses of service members who
die on active duty or as a result of a service caused injury or
condition. SBP and DIC, created by Congress are two separate programs
paid for two separate purposes. One is an employer based benefit and
the other is an indemnity compensation due to service to our Nation
causing a premature death. Even stranger, the surviving spouse is the
only beneficiary penalized. Any other insured interest in receipt of
SBP is paid in full. Even in the case of a divorce, where SBP is
considered ``property'', SBP may be paid in full to the former spouse
and DIC paid to the current spouse. Full SBP is unfairly denied only to
the un-remarried surviving spouse under age 57 of he/she who died on
active duty or of causes related to military service after retirement.
This is known as the SBP-DIC offset, and we must fight to end it.
My husband and I served as a team. I was responsible for not only
our own family but the families of all those who served under him in
his command. He worked 14-16 hour days consistently during his career
and spent half of our marriage deployed. He was a hero, shot during a
mission in Vietnam while working with SEAL TEAM Boat Support Unit One,
earning the Purple Heart and Bronze Star with V for valor. During our
long marriage, he missed the birth of one of his children, and made the
birth of our first by only a few hours, having been away on Navy
business, countless birthdays, anniversaries, holidays and summers
while I managed the children, our household, the automobiles, the
moves, (It seems that the unwritten rule is for the service member to
be away during the moving process, returning after the house is
unpacked), the official entertaining at our own personal expense, being
responsible for the well being of the spouses and children in the
command and enabled him to do his job so well. We both served although
I was unofficial and not compensated for my countless hours of
volunteer work.
When I lost my husband, I lost 75 percent of our household income
due to the SBP-DIC Offset and due to DIC being so low. My husband was
retirement eligible and therefore I was eligible for SBP and flat rate
DIC from the VA. DIC was implemented to make things right and to
provide income to those surviving spouses and children of those whose
demise was caused by service to our country. DIC was less than one
eighth of his active duty compensation. I lost 75 percent of the income
he earned. I was appalled to find that the government values the life
and sacrifice of those who gave all at only $1254.19 cents a month. The
value is close to the national poverty level versus what he was paid on
active duty. As a Navy spouse, I was there for countless others who
served our Nation as well as those who experienced loss. I moved 26
times to follow my husband's career at the sacrifice of my own career
as an educator. I was appalled at how indifferent the Military
bureaucracy treats the families who have paid the ultimate price.
These surviving spouses deserve better from their country.
To add insult to injury, as a result of the Sharp Case, SHARP vs.
United States, remarried surviving spouses who are eligible for SBP and
DIC who remarry after age 57, receive concurrent receipt of SBP and
DIC. Un-remarried surviving spouses over age 57 remain offset.
retention of dic with remarriage at age 57 sharp, et al, vs. united
states
The Veterans Benefits Act of 2003 (H.R. 2297, Section 101) provided
for DIC with remarriage after age 57. The Department of Defense failed
to implement this provision informally citing that a retiree is not a
``veteran.'' Rep. Henry E. Brown, Jr, SC, Chr., Subcommittee on
Benefits, House Committee on Veterans Affairs expressed in a letter
dated April 13, 2004, that the intent of Congress was to retain DIC
with Remarriage at age 57 without a ``reduction in other Federal
benefits'' such as SBP. DOD's refusal to implement the fiscal year 2004
law eventually forced the widows to sue in ``SHARP vs. United States.''
The intent of ``The Veterans Benefits Act of 2003'' was affirmed by
Chief Judge Haldane Robert Mayer, Federal Court of Appeals, on August
26, 2009.
``As recognized by the trial court, there are many plausible
explanations for Congress' decision to repeal the DIC-SBP offset only
for surviving spouses who receive DIC by reason of their having
remarried after age 57. Perhaps Congress intended to encourage marriage
for older surviving spouses. Perhaps section 1311(e) simply represents
a first step in an effort to eventually enact full repeal. After all,
the service member paid for both benefits: SBP with premiums; DIC with
his life. Perhaps it was recognition that the political process is the
art of the possible, and that prudence counseled against making the
perfect the enemy of the good. Whatever the reason, the government has
failed to make the ``extraordinary showing of [Congress'] contrary
intentions'' that would permit this court to construe section 1311(e)
in a way that eviscerates its plain language.''
conclusion
``Accordingly, the judgment of the United States Court of Federal
Claims is affirmed.''
Affirmed: 2008-5105 10
1,102 remarried spouses over age 57 (fiscal year 2014) have applied
for and received concurrent receipt of SBP and DIC.
Post 9/11 military surviving spouses are eligible to receive SBP as
of a law change shortly after Sept 11, 2001. However, it is a hollow
benefit as the majority of these surviving spouses' SBP is less than
DIC, resulting in a total offset. The Department of Defense is saving
an average of $1254.19 a month on each death by not having to pay all
of the SBP earned and purchased by the service members who gave all.
DOD is making a windfall profit off these deaths by not paying all of
the purchased and earned SBP, by not refunding all the premiums paid by
the service member with interest, and by charging interest on the
taxable premium refunded to those surviving spouses who do remarry
after age 57. Those surviving spouses who marry again and have their
offset eliminated are asked to refund the premiums back to DOD within
three weeks or they are put on a payment plan with interest. No
interest was refunded at the time of the death and this refund is tax
deductible. This is over kill to say the least and unjust. SBP is
taxable income. The premium refund was paid with pretax dollars so the
refund should be in the same category, not taxable, particularly when
it is not refunded in full.
special survivor indemnity allowance
Congress established SSIA (Special Survivor Indemnity Allowance) in
2008 as an incremental funding towards eliminating the SBP-DIC Offset.
It was a 10 year plan starting at $50 a month, increasing by $10 a
month a year until it reached $90. It then increased to $150, $200,
$275 in 2016 and sunsets at $310 a month in 2017. It is imperative for
SSIA to be extended in the event that the offset is not eliminated or
the impact will result in 63,000 surviving spouses receiving a $3700 a
year reduction in survivor benefits starting Nov 1, 2017. The language
to extend SSIA must be included in the base text of the NDAA17.
Congressman Grayson, FL, has introduced HR 4519, to include in the base
text NDAA17. H.R. 4519 would increase SSIA over 5 years: $400 in 2018;
$475 in 2019; $600 in 2020; $700 in 2021 and $800 in 2022.
petition
I started a petition on www.change.org to bring attention to this
issue. Hopefully, if I can gather enough support, the government will
not ignore us any longer. I have 76,438 signatures as of today and
growing. The American public is in favor of eliminating this unjust
offset. Here is the link to my petition: https://www.change.org/p/stop-
denying-earned-survivor-benefits-to-military-surviving-
spouses?recruiter=
242689561&utm_source=share_petition&utm_medium=copylink.
survivor benefit eligibility
The President and the Congress of the United States, a Government
``of the people, by the people, and for the people,'' have previously
determined eligibility of surviving spouses for the Department of
Defense's (DOD) Survivor Benefit Plan (SBP). When SBP was created in
1972 as a premium-based survivor benefit of military retirement, those
who died on active duty with 20 or more years of military service were
equally recognized as ``retirement eligible,'' and their surviving
spouses were also eligible for SBP.
In 2001,within days of the 9/11 tragedy, Congress swiftly enacted
legislation to expand eligibility for SBP to all surviving spouses of
active duty deaths. Senator Kay Bailey Hutchison, TX, spoke the words
quoted below on September 20, 2001, on the floor of the Senate to
introduce her amendment to the Senate NDAA02.
``On September 11, we were reminded of how real that sacrifice is,
and how critical those contributions are... This is why I introduced
legislation in June [S. 1037] to ensure that all military personnel who
die in the line of duly, like those who died serving their country at
the Pentagon, are able to receive retirement benefits they have earned.
In the military, personnel are not vested in retirement benefits unless
they have served 20 years or more, or unless the services medically
retire them before death. Clearly, someone who dies in the line of duty
cannot fulfill either of these requirements, meaning their families do
not receive their pro rata share of retirement pensions. It is horrible
enough for a family to lose a loved one-it is an even greater hardship
for them to not receive these earned benefits...''
--Senator Hutchison, TX
The Congress realized the injustice of failing to provide the SBP
to all surviving spouses of active duty deaths, and also recognized
that those active duty service members who died the youngest paid the
``highest price'' and made the ``greatest sacrifice.'' These surviving
spouses soon realized that this expanded SBP eligibility was a hollow
benefit to the younger widows because the DIC offset to SBP eliminated
all or most of any benefit they should have received. There are 62,094
surviving spouses (fiscal year 2014) eligible for both SBP and DIC.
About 4,580 surviving spouses are a result of active duty deaths.
Surviving spouses receive an average SBP of $1,099 mo. The flat rate
DIC paid in fiscal year 2015 is $l,254.19 per month. 37,685 of these
62,094 surviving spouses receive an SBP benefit less than DIC, which
appears to profit DOD.The SBP annuity for retirees is a premium based,
voluntary election benefit with the retiree paying 64 percent of the
premium; the government's contribution is 36 percent (fiscal year
2014). In designing the original SBP benefit, Congress concluded
``military surviving spouses should receive the same considerations as
civil service surviving spouses.'' [House Report 99-718, p. 211,
accompanying H. R. 4428, 99th Congress, 2nd Session (1986)] The
Survivor Benefit, created the Federal Civil Service Annuity, was the
first military benefit sold to retirees and provided to ``retirement
eligible'' Active Duty deaths without premiums in order to assure their
surviving spouse a continued portion of retired pay. SBP eligible
children and parents, and insured interest annuitants have no offset
with DIC. The Federal Civil Service annuity has no offset with DIC.
Senator Bill Nelson--SASC Testimony April 13, 2011:
``...So, Mr. Chairman, I had a little bit of experience in
insurance, before I came to the Senate, as the elected insurance
commissioner of Florida. And this offset is troubling when somebody
buys an insurance policy and there's another government program over
here, called Dependency Indemnity. And I know of no purchased annuity
that would deny payment based on the receipt of a different payment''.
the military retirement trust fund
The Military Retirement Trust Fund (MRF) holds and disburses the
Survivor Benefit annuity of $3.78 Billion annually to 274,259 surviving
spouses (fiscal year 2014) included in the total outlay of $56,620
Billion annually from the Trust Fund. The Congressional Budget Office
estimates a cost of $500 Million a year to restore SBP to eligible DIC
surviving spouses which is less than 1 percent of the total outlay of
the MRF. The Trust Fund has absorbed the cost of the elimination of the
SBP/DIC offset for remarried widows over age 57 and other new
categories of active duty SBP eligibility since 9/11/01.
The GAO report [GA0-06-837-R], ``Actuarial Soundness of the DOD
Survivor Benefit Plan,'' dated July 26, 2006, found that the Military
Retirement Trust Fund will maintain actuarial soundness with the
provision of SBP without offset by DIC to all military SBP eligible
widows.''
There has been a great reluctance on the part of Congress and the
Administration to find the funding or to ask the taxpayer to make a
small sacrifice in recognition of the greater sacrifice made by service
members who have died in service to their country. The taxpayer should
bear all funding of a ``Cost of War'' to include equal payment of DOD's
Survivor Benefit Annuity to all military widow(er)s without penalty of
a military service related death.
DOD's Compensation Officials brief the annual public meeting for
the Board of Actuaries (Military Retirement Trust Fund) each year,
--Board of Actuaries meeting, July 22, 2005: the Assistant Director
of Compensation explained a ``Philosophy Shift'' in Congress in
that DOD, VA, and Social Security Systems are becoming
``additive'' [to retired pay replacing the tradition ``double
dipping'' rules.] He further stated that current duplication
does not have a well defined basis and may have inconsistencies
and inequities that need to be addressed.
--Board of Actuaries meeting, August 28, 2009. Assistant Director of
Compensation briefs on NDAAIO, S. 1390, Section 652, Repeal of
requirement of reduction of SBP survivor annuities by DIC
Dependency and Indemnity Compensation. He explains that the
repeal of SBP/DIC is opposed by OSD. The repeal would leave 540
thousand ``second class'' survivors who are not eligible for
both SBP and DIC. How could a survivor feel ``second class'' if
the service member did not die of a military related cause?
``The Eleventh Quadrennial Review of Military Compensation'' (p.
17) defines benefits of military retirement as deferred compensation
earned while on active status. The deferred compensation is officially
estimated at 28 percent of Regular Military Compensation by the
Government Accountability Office (GAO).The Social Security/SBP Offset
at age 62 was repealed in 2004. The cost for the repeal of the SS/SBP
age 62 was a provision included in P. L. 108-375 and cost $14 Billion
over 10 years. Why was the social security offset to SBP eligible
surviving spouses of non-service connected deaths coordinated and
passed with the provision of concurrent receipt for disabled retirees
only instead of also adding surviving spouses of disabled retirees?
SBP/DIC surviving spouses are at least equally deserving of their
Survivor Benefit Annuity. The majority of the DIC eligible surviving
spouses don't even receive the SBP annuity to benefit from the repealed
offset by Social Security.
legislative history--house and senate
Since 1999, Congress has passed about a dozen pieces of legislation
that incrementally restored military retired pay and SBP to those who
were affected by dual compensation laws. In the House of
Representatives, since the 107th Session of Congress, there have been
10 bills, 2 discharge petitions, and one motion to recommit the NDAA07
regarding the elimination of the SBP/DIC offset. The co-sponsors of
these bills have numbered from 44 to 352 in different sessions of
Congress. It is mind boggling to see the inconsistency with which
elected officials support these bills by putting their name on the
bill...so fearful of accusations of spending too much money rather than
making laws based on traditional public policy. Loyal sponsors of the
legislation have been Rep. Henry Brown, SC, Rep. Solomon Ortiz, TX,
Rep. Chet Edwards, TX, Rep. Walter B. Jones, NC; and Rep. Joe Wilson,
SC.
The NDAA08 included a provision to establish a Special Survivor
Indemnity Allowance (SSIA) with an initial payment of $50/month the
first year increasing $10 a month until the payment reaches $310/month
in 2017. HASC Chairman Ike Skelton, MO, personally negotiated funds to
increase the SSIA to $310/month and extend the time it sunsets to
October, 2017.
In the Senate, Senator Bill Nelson, Fl. has remained a loyal
champion since 2001 and the 107th Congress. He has introduced 8 bills
and several Senate Amendments to the NDAA. It is disappointing to watch
the contradictions with the support of various Senators and
Congressmen. Newly elected Senator Barack Obama, IL, attended the Feb.
3, 2005 hearing before the Senate Veteran Affairs Committee as a Member
of the Committee. Senator Obama attended a Gold Star Wives Memorial Day
reception in 2007 and his remarks recognized the significant sacrifices
surviving families had made. It is so difficult to understand that
President Obama has not adhered to his own beliefs stated at the Senate
Hearing of being inspired to follow through by his sense of our
significant sacrifices. He cosponsored S. 935 (05-24-07) and SA 4979
(06-24-08), bills to eliminate the SBP/DIC offset. He voted for the
Senate Amendment to the NDAA09 even though it wasn't funded. The
elimination of the SBP/DIC offset has never been included in the
President Obama's budget even though the White House staff has convened
meetings on the topic.
conclusion
DEAD and DISABLED service members are a consequence of war. The
surviving families of American Heroes are the long term cost of war.
The payment of SBP assures all surviving military spouses their pro
rata share of earned retired pay (and clearly, someone who dies on
active duty does not have the opportunity to pay SBP premiums).
To sum up, I believe that full SBP should be paid to all recipients
without DIC offset I urge the Members of Congress to be mindful of
their obligation to protect these surviving spouses just as their
deceased service members have protected our Nation. Military Widows are
reluctant to participate in the process of legislative change. Their
lives have been about caring for others. They have made such great
sacrifices all their lives in the tradition of military families. There
is also an expectation that legislative officials will do their job.
Correcting this offset of the DOD's Survivor Benefit is a moral
obligation, which now stands before Congress and the President.
I'm calling on Congress to provide surviving spouses with 100
percent of the Survivor Benefit Plan promised. Our government is
reneging on a voluntarily purchased insurance annuity to assure the
surviving spouse receives a portion of the retired pay the service
member earned. When a service member makes the ultimate sacrifice,
their family shouldn't have to worry about how they will survive.
Please end the SBP-DIC offset for military surviving spouses and
pass HR 1594, (Rep. Joe Wilson, SC) and S 979, (Senators Nelson, FL and
Collins, ME), the bills to change the law and end this unjust offset
and Congressman Grayson, FL, Bill HR 4519 to extend and increase SSIA.
______
Prepared Statement of Pulmonary Hypertension Association
Chairman Cochran and distinguished members of the Subcommittee,
thank you for the opportunity to submit testimony on pulmonary
hypertension. On behalf of the community of individuals affected by
pulmonary hypertension and the Pulmonary Hypertension Association
(PHA), we request that ``respiratory health'' be once again included as
a condition eligible for study in the Department of Defense (DOD) Peer-
Reviewed Medical Research Program (PRMRP) in fiscal year 2017.
about pulmonary hypertension
Pulmonary hypertension (PH) is a disabling and often fatal
condition simply described as high blood pressure in the lungs. It
affects people of all ages, races and ethnic backgrounds. Although
anyone can get PH, there are risk factors that make some people more
susceptible.
Treatment and prognosis vary depending on the type of PH. In one
type, pulmonary arterial hypertension (PAH), the arteries in the lungs
become too narrow to handle the amount of blood that must be pumped
through the lungs. This causes several things to happen: a backup of
blood in the veins returning blood to the heart; an increase in the
pressure that the right side of the heart has to pump against to push
blood through the lungs; and a strain on the right side of the heart
due to the increased work that it has to do. If this increased pressure
is not treated, the right side of the heart can become overworked,
become very weak and may possibly fail. Because blood has difficulty
getting through the lungs to pick up oxygen, blood oxygen level may be
lower than normal. This can put a strain not only on the heart, but
also decrease the amount of oxygen getting to the brain.
There is currently no cure for PAH. Twelve treatment options are
available to help patients manage their disease and feel better day to
day but even with treatment, life expectancy with PAH is limited.
about the association
From simple beginnings--four women who met around a kitchen table
in Florida in 1991--the Pulmonary Hypertension Association has evolved
into an international community of over 16,000 pulmonary hypertension
patients, caregivers, family members and healthcare professionals.
We are now the largest and oldest PH association in the world, and
we are changing the history of an illness. In the 25 years since that
first meeting, the number of FDA-approved PH treatments has grown from
0 to 14, PHA research programs have been supported by commitments of
more than $17 million, and more than two dozen Pulmonary Hypertension
Care Centers have completed PHA's accreditation process.
PHA is a 501(c)(3) nonprofit organization that relies on donations
to fund its many programs, including the nation's largest PH patient
and caregiver support group network, lifesaving early diagnosis
awareness and education programs, specialty care resources, and
research to find ways to prevent and cure PH. For 12 consecutive years,
PHA has received the highest rating--four stars--for fiscal
accountability and transparency from Charity Navigator, placing it in
the top half of 1 percent of all rated charities.
We continue to work every day to end isolation, provide education,
involve our constituents in everything we do, and find a cure for
pulmonary hypertension.
the patient perspective
The Hicks Family
Carl Hicks is a former Army Ranger and a retired Colonel who led
the first battalion into Iraq during the first Iraq war. Every member
of his family was touched by pulmonary hypertension after the diagnosis
of his daughter Meghan in 1994. We share their story here, in Carl's
own words:
We're sorry Colonel Hicks, your daughter Meaghan has contracted
primary pulmonary hypertension. She likely has less than a year to live
and there is nothing we can do for her.
``Those words were spoken in the spring of 1994 at Walter Reed Army
Medical Center. They marked the start down the trail of tears for a
young military family that, only hours before, had been in Germany. My
family's journey down this trail hasn't ended yet, even though
Meaghan's fight came to an end with her death on January 30, 2009. She
was 27.
Pulmonary hypertension (PH) struck our family, as it so often does,
without warning. One day, we had a beautiful, healthy, energetic 12-
year old gymnast, the next, a child with a death sentence being robbed
of every breath by this heinous disease. The toll of this fight was
far-reaching. Over the years, every decision of any consequence in the
family was considered first with regards to its impact on Meaghan and
her struggle for breath.
The investment made by our country in my career was lost, as I left
the service to stay nearer my family. The costs for Meaghan's medical
care, spread over the nearly 14 years of our fight, ran well into the
seven figures. Meghan even underwent a heart and dual-lung transplant.
These challenges, though, were nothing compared to the psychological
toll of losing Meaghan who had fought so hard for something we all take
for granted, a breath of air.''
Jessica Armstrong
In 2011, at the age of 29, GS12 Human Terrain Analyst Jessica
(Puglisi) Armstrong who was serving in Afghanistan as Department of the
Army Civilian began experiencing progressive shortness of breath
dizziness, and exercise intolerance. Jessica reported her symptoms
multiple times. The first time she was told that she needed to eat
more, then she was diagnosed with dehydration. As her symptoms
continued to progress, as is the case with many PH patients, she was
told she had asthma and given a series of inhalers. Two months later,
she fainted for no apparent reason. A CT scan revealed blood clots in
her lungs and Jessica was medically evacuated to Germany and then to
the U.S. Six months after her fist symptoms, she was given a clean bill
of health and orders to return to Afghanistan. Not feeling better she
sought a second opinion at a civilian hospital where she was finally
given a complete work up and diagnosed with chronic thromboembolic
pulmonary hypertension.
Jessica had a unique form of PH due to blood clots that can be
mitigated with a pulmonary thromboendarterectomy (PTE)--a complex
surgery that involves opening the chest cavity and stopping circulation
for up to twenty minutes. She describes the surgery, which she
underwent at the University of California San Diego, as ``more painful
than I could ever imagine.'' She notes that UCSD's PTE program did not
begin until 1990 and even now, despite being recognized as the global
leaders on this procedure, UCSD has only completed about 3,000
surgeries. The procedure that saved Jessica's life was developed in her
lifetime.
Jessica was terminated from Army employment and spent more than
$60,000 out of pocket on medical expenses which she has not been able
to recoup. She was forced to begin a civilian job just two weeks after
her PTE in order to obtain health insurance. Despite this, Jessica is,
in many ways, one of the lucky ones. I am glad to report that she is
now doing well and serving an integral role at PHA as the Senior
Manager of our Early Diagnosis Campaign.
conclusion
For many years ``pulmonary hypertension'' was recognized as a
condition eligible for study and more recently the category
``respiratory health'' has allowed PH researchers to continue to
compete for research funding through the PRMRP. Absent PH's inclusion
in the PRMRP, please once again recognize ``respiratory health'' as a
category of study in fiscal year 2017 so critical research can continue
to move forward (see below).
We appreciate that the Defense Appropriations Subcommittee and the
Senate play important roles in crafting the annual eligible conditions
list. For many years ``pulmonary hypertension'' was recognized as a
condition eligible for study and more recently the category
``respiratory health'' has allowed PH researchers to continue to
compete for research funding through the PRMRP. Absent PH's inclusion
in the PRMRP, please once again recognize ``respiratory health'' as a
category of study in fiscal year 2017 so critical research can continue
to move forward (see below).
Thank you again for your time and your consideration of the PH
community's requests.
______
Prepared Statement of Scleroderma Foundation
Chairman Cochran and distinguished members of the Subcommittee,
thank you for the opportunity to submit testimony on scleroderma. On
behalf of the community of individuals affected by scleroderma and the
Scleroderma Foundation, we request that `scleroderma' be once again
included as a condition eligible for study in the Department of Defense
(DOD) Peer-Reviewed Medical Research Program (PRMRP) in fiscal year
2017.
about scleroderma
Scleroderma, or systemic sclerosis, is a chronic connective tissue
disease generally classified as one of the autoimmune rheumatic
diseases. The word ``scleroderma'' comes from two Greek words:
``sclero'' meaning hard, and ``derma'' meaning skin. Hardening of the
skin is one of the most visible manifestations of the disease. The
disease has been called ``progressive systemic sclerosis,'' but the use
of that term has been discouraged since it has been found that
scleroderma is not necessarily progressive. The disease varies from
patient-to-patient. It is estimated that about 300,000 Americans have
scleroderma. About one third of those people have the systemic form of
scleroderma. Since scleroderma presents with symptoms similar to other
autoimmune diseases, diagnosis is difficult. There may be many
misdiagnosed or undiagnosed cases. Currently, there is no cure for
scleroderma.
about the foundation
The Scleroderma Foundation is dedicated to the concerns of people
whose lives have been impacted by the autoimmune disease scleroderma,
also known as systemic sclerosis, and related conditions. Its threefold
mission of support, education, and research guides the Foundation's
work in providing education programs for patients and their families,
peer-to-peer support through its nationwide network of chapters and
support groups, advocacy efforts to increase awareness of the disease
among the general public and the medical community. The Foundation also
has a research program that funds clinical research to find the cause
and cure for scleroderma and related conditions.
the patient perspective
``My constantly aching hands begged for mercy of just one day
without pain. My joints started to feel like they were being torn away
from my body. Anytime I touched something cold, my hands would tingle
and burn. Painful sores started appearing on my knuckles. You stole my
skin color and with that went my confidence. It was like I was turning
into a mummy as my skin tightened with collagen, day by day. I was
beginning to need help performing small tasks. Opening a water bottle
or turning a key in the door started to become difficult. Standing for
long periods of time made my hips radiate with pain. In 2012 I had to
stop working, at 24 years old. The definition of normal as I knew it
was being torn down and built into something completely new. And so was
my soul.
I now need help with everything! Getting dressed, washing my hair,
cleaning, doing laundry; pretty much anything I have to use my hands
for. You stole my independence. I had to learn to swallow my pride and
ask for help. It's a tough thing to do, especially when you're at an
age that's supposed to be your prime. Friends and family around me have
blossomed into caregivers and helping me has become second nature to
them. It's a beautiful thing when those surrounding you automatically
adapt to your disability. Support is the lifeboat that keeps me
afloat.''
-- Excerpt from ``My Letter to Scleroderma'', Jessica Messingale,
Coconut Creek, Florida
conclusion
For over 10 years, scleroderma has been listed as a condition
eligible for study through the DOD PRMRP. Since fiscal year 2005, the
opportunity for scleroderma researchers to compete for funding through
this mechanism led to over $10 million in scleroderma research funding
(see below) as well as the initiation of meaningful research projects.
Research on the underlying mechanisms of scleroderma is showing
relevance to all fibrosis, which occurs at higher rates among
individuals who served in the military and our veterans. Further,
military service-associated environmental triggers, particularly
silica, solvent, and radiation exposure, are believed to be potential
triggers for scleroderma in individuals that are genetically
predisposed to it.
We appreciate that the Defense Appropriations Subcommittee and the
Senate play important roles in crafting the annual eligible conditions
list. The scleroderma community urges you to include ``scleroderma'' as
a condition eligible for study through the PRMRP within the Committee
Report accompanying the fiscal year 2017 Defense Appropriations Bill.
Thank you again for your time and your consideration of the
scleroderma community's requests.
______
Prepared Statement of Sleep Research Society
Chairman Thad Cochran, Ranking Member Durbin, and distinguished
members of the Subcommittee, as you begin to craft the fiscal year 2017
Defense appropriations bill, the Sleep Research Society is pleased to
submit this statement for the record asking you to provide $250 billion
for the Department of Defense (DOD) Peer Reviewed Medical Research
Program in addition to listing sleep disorders as a condition for study
within the program as it has historically been included since 2013.
These actions will ensure further advancements in understanding the
linkage between active service and sleep disorders such as sleep apnea,
insomnia, and PTSD, and how to prevent or effectively treat them.
sleep research society
SRS was established in 1961 by a group of scientists who shared a
common goal to foster scientific investigations on all aspects of sleep
and sleep disorders. Since that time, SRS has grown into a professional
society comprising over 1,100 researchers nationwide. From promising
trainees to accomplished senior level investigators, sleep research has
expanded into areas such as psychology, neuroanatomy, pharmacology,
cardiology, immunology, metabolism, genomics, and healthy living. SRS
recognizes the importance of educating the public about the connection
between sleep and health outcomes. We promote training and education in
sleep research, public awareness, and evidence-based policy, in
addition to hosting forums for the exchange of scientific knowledge
pertaining to sleep and circadian rhythms.
According to an Institute of Medicine's report entitled, ``Sleep
Disorder and Sleep Deprivation: An Unmet Public Health Problem''
(2006), chronic sleep and circadian disturbances and disorders are a
very real and relevant issue in today's society as they affect 50-70
million Americans across all demographic groups. Sleep deprivation is a
major safety issue, particular in reference to drowsy driving, where it
is a factor in 20 percent of motor vehicle injuries. The widespread
effect of sleep disorders on every age group poses a public health
risk, extending from the ability to learn to maintain a healthy
lifestyle. Furthermore, it is important to recognize that sleep
disorders and circadian disturbances are often an indicator of, or a
precursor to other major diseases and disorders including; obesity,
diabetes, hypertension, cardiovascular disease, stroke, depression,
bipolar disorder, and substance abuse. Another increasingly detrimental
condition affecting 15 percent of the population is sleep-disordered
breathing, including obstructive sleep apnea. Sleep apnea results in
excessive daytime somnolence, poor performance, increased frequency of
road traffic accidents, and arterial hypertension. Studies show that 85
percent of 725 troops returning home from Afghanistan and Iraq had a
sleep disorder and the most common was obstructive sleep apnea (51
percent). If left untreated, obstructive sleep apnea has significant
negative impacts on health, including early mortality.
Sleep and circadian rhythm scientists engage in sleep research and
public health awareness activities through DOD. The language proposed
above helps to foster the research advancements that the DOD has been
making towards treatments and prevention measures for sleep disorders
and improving sleep quality, as this is an area that disproportionately
affects the health of armed military members in California and
nationwide. Additional funding is needed in the overall Peer reviewed
medical research program to ensure a robust competition for grant
funding, given the prevalence of sleep disorders and poor sleep quality
among armed servicemen.
A new study found a high prevalence of sleep disorders and a
startlingly high rate of short sleep duration among active duty
military personnel. The study suggests the need for a cultural change
toward appropriate sleep practices throughout the military. Results
show that the majority of participants (85.1 percent) had a clinically
relevant sleep disorder. Obstructive sleep apnea (OSA) was the most
frequent diagnosis (51.2 percent), followed by insomnia (24.7 percent).
Participants' mean self-reported home sleep duration was only 5.74
hours per night, and 41.8 percent reported sleeping five hours or less
per night
Sleep disorders are one of the most common symptoms of military
personnel who return from deployment. Comorbid insomnia and OSA is a
frequent diagnosis in military personnel referred for evaluation of
sleep disturbances after deployment.
Sleep apnea is difficult to treat and may explain the refractory
nature of many service-related diagnoses.\2\
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\2\ Mysliwiec, Vincent et al. ``Sleep Disorders in U.S. Military
Personnel: A High Rate of Comorbid Insomnia and Obstructive Sleep
Apnea.'' Chest 144.2 (2013): 549--557. PMC. Web. 26 Feb. 2016.
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Thank you for the opportunity to submit the views of the sleep
research community. Please do not hesitate to contact us should you
have any questions or require additional information.
______
Prepared Statement of Tuberculosis Roundtable
The TB Roundtable, a coalition of over 15 research, public health
and health professional associations working to support global and
domestic tuberculosis (TB) control and research, thanks Chairman
Cochran and Ranking Member Durbin and fellow members of the committee
for this opportunity to provide written testimony to discuss important
health threats to our military, including TB. Our testimony will
outline the importance of TB research and development dollars to our
Nation's military. We are writing to request that you maintain TB, a
deadly airborne infectious disease, in the Congressionally Directed
Medical Research Program (CDMRP) Peer Reviewed Medical Research Program
(PRMRP) disease list in fiscal year 2017 DOD appropriations
legislation.
As you know, the men and women in our Armed Forces are responsible
for protecting our Nation from threats domestically and abroad. A
critical element of DOD's mission is supporting infectious disease
research, which it conducts at various facilities such as the Walter
Reed Army Institute of Research and the Naval Medical Research Center.
Since DOD cannot programmatically fund every disease that could
cause harm to our Nation's military personnel, Congress fills this gap
in research through the CDMRP, which presents a critical opportunity
for Congress to directly influence research funding by providing a list
of approved diseases eligible for competitive grant opportunities via
the PRMRP. TB was placed on this list in fiscal year 2016 after a 4-
year absence, and it is important to maintain its position on the list
now that it is recognized by the World Health Organization (WHO) as
causing more deaths than any other single infectious disease agent.\3\
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\3\ The World Health Organization, 2015 Global Tuberculosis Report,
Executive Summary, Page 1.
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TB killed approximately 1.5 million people in 2014. Additionally,
9.6 million people developed active TB in 2014, with an estimated
480,000 of those cases being multidrug-resistant (MDR) including 9.7
percent that were extensively drug-resistant (XDR), which is even more
deadly and costly to treat.\4\ While these statistics are alarming,
more concerning is the lack of research funding going towards new tools
and treatments for one of humanity's oldest diseases. The only
available vaccine for TB, Bacille Calmette-Guerin (BCG), is only
moderately effective in preventing TB in infants and young children--
and it doesn't adequately protect teens and adults. Current treatment
regimens are long, expensive, and difficult to implement in many parts
of the world. Treatment side effects are painful and long-lasting,
including permanent hearing loss. Accurately diagnosing TB, and in
particular detecting drug resistance, is still lengthy, complex, and
costly.
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\4\ Ibid.
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Our military's global footprint means that American military men
and women are posted in countries or regions that experience high rates
of TB infection. For instance, in Europe where 80,000 troops and
dependents are stationed, there were 320,000 cases of TB and 72,000
cases of MDR-TB in 2014. In the Western Pacific region, 61,000 troops
and dependents live amidst 1.4 million cases of TB and 71,000 cases of
MDR-TB, according to the most recent WHO estimates.\5, 6\
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\5\ Defense Manpower Center, Total Military Personnel and Dependent
End Strength By Service, Regional Area, and Country, Sept. 30. 2015,
https://www.dmdc.osd.mil/appj/dwp/rest/
download?fileName=DRS_54601_309_Report_P1509.xlsx&groupName=milRegionCou
ntry.
\6\ The World Health Organization, 2015 Global Tuberculosis Report,
Regional Profiles Annex, http://www.who.int/tb/publications/
global_report/gtbr15_annex03.pdf?ua=1.
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Pacific Pathways, an Army short rotation program, puts American
forces directly in countries with high TB burdens such as the
Philippines, Indonesia, and Thailand, and cycles them back to American
bases in the Pacific and the U.S.\7\ This program could potentially
create a migration pattern for TB from high-burden East Asia and
Pacific countries directly back to the United States. Worse still,
drug-resistant TB is contagious and poses a serious threat to public
health in the U.S. if no new interventions are created, according to
the U.S. Centers for Disease Control and Prevention.
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\7\ U.S Army Pacific Readiness and the Strategic Balance https://
www.usarpac.army.mil/pdfs/Pacific%20Pathways%2016%20Tri-fold.pdf.
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In addition to threatening our military, TB poses tremendous
difficulties for many of our allies abroad. Outbreaks of MDR-TB around
the world could cause drug shortages, severe economic consequences and
possibly extensive fatalities. Funding research and development now can
make this scenario less likely in the future.
For these reasons, more research into TB and related vaccine
technologies, treatments, and diagnostics is imperative if we want to
avoid tragic scenarios of MDR- and XDR-TB outbreaks in the future. TB
was included on the approved disease list in the fiscal year 2016 CDMRP
PRMRP, and we must continue to recognize the threat TB poses to our
military and the American public. We therefore strongly encourage you
to include the disease again in the fiscal year 2017 CDMRP PRMRP.
______
Prepared Statement of U.S. Hereditary Angioedema Association
Chairman Cochran and distinguished members of the Subcommittee,
thank you for the opportunity to submit testimony on Hereditary
Angioedema (HAE). On behalf of the community of individuals affected by
HAE and the U.S. Hereditary Angioedema Association (U.S. HAEA), we
request that `hereditary angioedema' be once again included as a
condition eligible for study in the Department of Defense (DOD) Peer-
Reviewed Medical Research Program (PRMRP) in fiscal year 2017.
about hae
HAE is a rare and potentially life-threatening condition that
occurs in about 1 in 10,000 to 1 in 50,000 people. HAE symptoms include
episodes of edema (swelling) in various body parts including the hands,
feet, face and airway. In addition, patients often have bouts of
excruciating abdominal pain, nausea and vomiting that is caused by
swelling in the intestinal wall. Airway swelling is particularly
dangerous because it can lead to death by asphyxiation.
about u.s. haea
U.S. HAEA is a non-profit patient advocacy organization dedicated
to serving the estimated 6,000 HAE sufferers in the U.S. We provide a
support network and a wide range of personalized services for patients
and their families. We are also committed to advancing clinical
research designed to improve the lives of HAE patients and ultimately
find a cure.
patient stories
``I was medically retired from the Air Force in 1981 with almost
10-years of service from Angioedema, as it was called back then and
Delayed Pressure Urticaria, both, which are very painful and
deliberating. It wasn't until 2007 that I became aware that there was a
blood test to prove without a doubt that I suffered from Hereditary
Angioedema where medicines were available to me through the efforts of
the U.S. HAEA and their medical contributors/Doctors. To this day, the
VA has done nothing to assist me with treatment or medications
necessary to treat HAE. Please Senators, help change this.''
--S/Sgt Mark Clark, Wood Village, Oregon
``I was first diagnosed with Hereditary Angioedema when serving our
great country in the USAF in 1960 while on temporary duty at Walter
Reed Hospital. However, there was no treatment at that time to help
control the swelling and extreme vomiting during the episodes other
than using epinephrine when the swelling was in my throat. Our daughter
is also afflicted with this condition since birth and was intubated to
save her life at the University Hospital (Minneapolis) a couple of
years ago. Today there is some help, but more needs to be done.''
--Don Anderson, East Bethel, Mississippi
``I have been suffering with this disease since birth. I have
several episodes a year, but lately it has been very month. I suffer
from chronic pain in my abdomen with the nausea and vomiting regularly
and also swelling of my face, hands, and feet. I am an educator and
work around children so therefore, if I have swelling I am unable to
attend school. I sometimes end up going close to the end of the
breakout. It would really be a blessing to find a cure for it or some
type of treatment. There is none now.''
--Sharron Crowner, Marion, South Carolina
conclusion
On behalf of the community of individuals affected by HAE,
especially those who serve or have served in the Armed Forces, we thank
the Subcommittee for including HAE in the Peer-Reviewed Medical
Research Program every year since fiscal year 2012. The HAE scientific
community has shown great interest in the program and has competed
successfully for over $1 million in research awards to help find
innovative therapies and a cure. We urge the Subcommittee to continue
to include `hereditary angioedema' as an eligible condition for study
in the DOD PRMRP in fiscal year 2017.
Thank you for the opportunity to submit the views of the HAE
patient community.