[Senate Hearing 114-653]
[From the U.S. Government Publishing Office]




 
       DEPARTMENT OF DEFENSE APPROPRIATIONS FOR FISCAL YEAR 2017

                              ----------                              

                                       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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \3\ The World Health Organization, 2015 Global Tuberculosis Report, 
Executive Summary, Page 1.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \4\ Ibid.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \7\ U.S Army Pacific Readiness and the Strategic Balance https://
www.usarpac.army.mil/pdfs/Pacific%20Pathways%2016%20Tri-fold.pdf.
---------------------------------------------------------------------------
    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.