Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Prevention, Awareness, 
and Research of Autoimmune Diseases Act of 2009’’. 
SEC. 2. FINDINGS. 
The Congress finds as follows: 
(1) The National Institutes of Health estimates 
that between 14 and 23.5 million Americans have an 
autoimmune disease and the prevalence is rising. 
Seventy-five percent of those afflicted are women 
with most cases occurring during the childbearing 
years. 
(2) Researchers have identified more than 100 
autoimmune diseases and suspect at least 40 addi-
tional disorders of having an autoimmune basis. 
(3) Autoimmune diseases are chronic and can 
be life-threatening, ranking in the top 10 causes of 
death in children and women in all age groups up 
to 64 years of age. 
(4) Early diagnosis of and commencement of 
treatment for autoimmune diseases can prevent or 
reduce serious organ damage, disability, and death. 
According to a study conducted by the American 
Autoimmune Related Diseases Association, more 
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than half of those with an autoimmune disease suf-
fered for 4 years and visited 4 doctors before obtain-
ing a diagnosis, and 44.6 percent of women were 
told they were chronic complainers or too concerned 
with their health prior to being diagnosed. 
(5) A close genetic relationship exists among 
autoimmune diseases, explaining clustering in indi-
viduals and families as well as common pathways for 
disease development. 
(6) The rapidly evolving field of epigenetics has 
shown that environmental factors can cause genes to 
be ‘‘turned on’’ or ‘‘turned off’’. Differing exposures 
to environmental factors can result in differing pat-
terns of autoimmune expression. 
(7) Frequently used immunosuppressant treat-
ments lead to devastating long-term side effects. 
Those with autoimmune diseases lack effective treat-
ments. 
(8) The Institute of Medicine reports that the 
United States is behind other countries in research 
into immune system self-recognition, the process in-
volved in autoimmune diseases. 
(9) Understanding how to modulate immune 
system activity will benefit transplant recipients, 
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cancer patients, AIDS patients, and infectious dis-
ease patients. 
(10) The National Institutes of Health esti-
mates that annual direct health care costs for auto-
immune 
disease 
are 
in 
the 
range 
of 
$100,000,000,000. 
(11) Lack of awareness on the part of the pub-
lic and health care professionals contributes to pa-
tients’ extreme difficulty in obtaining a correct diag-
nosis, and lack of effective treatments. Despite the 
prevalence of autoimmune diseases, public awareness 
remains low. According to a Roper study, only 5.5 
percent of Americans can even name an autoimmune 
disease and 29 percent incorrectly identify AIDS as 
an autoimmune disease. Awareness is lowest among 
adults ages 18 to 34, the age group most likely to 
develop an autoimmune disease. 
(12) Examples of autoimmune diseases include 
lupus, 
multiple 
sclerosis, 
rheumatoid 
arthritis, 
Sjo¨gren’s syndrome, polymyositis, pemphigus, myas-
thenia gravis, Wegener’s granulomatosis, psoriasis, 
celiac 
disease, 
autoimmune 
platelet 
disorders, 
scleroderma, alopecia areata, vitiligo, autoimmune 
thyroid disease, and sarcoidosis. 
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(13) Lupus can affect many parts of the body, 
including joints, skin, kidneys, heart, lungs, blood 
vessels, and brain. At least 1,500,000 Americans 
have a form of lupus, 9 out of 10 of these Americans 
are women, and 80 percent of all newly diagnosed 
cases of lupus are among women of childbearing age. 
According to a Lupus Foundation of America sur-
vey, more than half of the people with lupus suffered 
for 4 or more years and visited 3 or more doctors 
before obtaining a diagnosis of lupus. About 1 out 
of 5 lupus sufferers receives disability payments, 
costing the Government several billion dollars each 
year for Social Security disability benefits, lost 
taxes, and medical care provided through Medicare 
and Medicaid. The average annual cost of medical 
treatment for an individual with lupus is $6,000 to 
$10,000; for some people, medical costs may exceed 
several thousand dollars every month. Early diag-
nosis of and commencement of treatment for lupus 
can prevent or reduce serious organ damage, dis-
ability, and death. 
(14) In multiple sclerosis (MS), the immune 
system attacks the protective coating around the 
nerves. The damage affects the brain or spinal cord 
and interferes with the nerve pathways, causing 
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muscular weakness, loss of coordination, and visual 
and speech problem. Multiple sclerosis is a chronic 
and often disabling disease of the central nervous 
system which often first appears in people who are 
20 to 50 years of age, with lifelong physical and 
emotional effects. Multiple sclerosis is twice as com-
mon in women as in men. An estimated 400,000 in-
dividuals have multiple sclerosis nationally. Accord-
ing to the Multiple Sclerosis Society, the average an-
nual cost of multiple sclerosis to each affected indi-
vidual is approximately $57,000, and the total cost 
can exceed $3,000,000 over an individual’s lifetime. 
The annual cost of treating all people who suffer 
from multiple sclerosis in the United States is ap-
proximately $20,000,000,000. 
(15) Four million Americans suffer from 
Sjo¨gren’s syndrome, a serious autoimmune disease. 
Ninety percent of those with Sjo¨gren’s syndrome are 
women. Sjo¨gren’s affects all races and ethnic groups. 
Hallmark symptoms of Sjo¨gren’s include dry eyes 
and dry mouth, which can lead to corneal abrasions 
and blindness and loss of teeth if not recognized and 
treated and affect a persons’ ability to eat, swallow, 
and digest food. Sjo¨gren’s syndrome is a systemic 
disease that can affect any body organ or system, 
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cause extreme fatigue and pain, and lead to develop-
ment of non-Hodgkin’s B-cell lymphoma and heart 
block in babies born to mothers with Sjo¨gren’s syn-
drome. 
Sjo¨gren’s 
syndrome 
is 
frequently 
misdiagnosed because of lack of recognition and phy-
sician education. According to the Sjo¨gren’s Syn-
drome Foundation, the average time for those who 
do obtain a correct diagnosis is 6.3 years after the 
onset of symptoms and active attempt to obtain a di-
agnosis. 
(16) In rheumatoid arthritis, the immune sys-
tem attacks the linings of the joints resulting in 
joint pain, stiffness, swelling, and destruction. 
Among the 2,100,000 people with rheumatoid arthri-
tis in the United States, women outnumber men 3 
to 1. According to the Arthritis Foundation, total di-
rect costs of rheumatoid arthritis, including money 
spent on treatments, hospitalizations, medications, 
transportation, and specialist aids, are approxi-
mately $1,200,000,000 each year. The average med-
ical care expenditures over the course of a rheu-
matoid arthritis patient’s lifetime is $225,000 to 
$370,000. 
(17) Systemic sclerosis affects approximately 
240 individuals per million, and an estimated 
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300,000 are affected by all forms of scleroderma in 
the United States. Scleroderma strikes more women 
than men, with an overall ratio of approximately 4 
to 1. Scleroderma is a chronic, often progressive 
autoimmune disease. The disease, which literally 
means ‘‘hard skin’’, can cause thickening and tight-
ening of the skin, as well as fibrosis of the internal 
organs, including the lungs, heart, kidneys, and gas-
trointestinal tract. Scleroderma can be life threat-
ening. The Scleroderma Foundation estimates the 
direct and indirect costs of systematic sclerosis in 
the United States to be $1,500,000,000, the value of 
lifetime earnings lost to be $300,000 per systemic 
sclerosis death, and direct costs at $4,731 per pa-
tient annually. 
(18) Myasthenia gravis is an autoimmune neu-
romuscular disease which affects the skeletal mus-
cles and is characterized by muscular weakness 
which is the result of a disturbance of the neuro-
muscular transmission. Certain muscles are more 
frequently involved, and these include the muscles 
that control eye movement, eyelids, chewing, swal-
lowing, coughing, and facial expression. Muscles that 
control breathing and movement of the arms and 
legs may also be affected. Approximately 40 to 50 
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percent of individuals with myasthenia gravis experi-
ence vision problems at the time of diagnosis, and 
up to 90 percent experience such problems in the 
disease’s lifetime. About 40 to 50 percent of patients 
experience generalized myasthenia gravis affecting 
the muscles of the trunk or limbs, which may result 
in impaired breathing. The prevalence of myasthenia 
gravis in the Untied States is estimated at approxi-
mately 36,000 cases. However, myasthenia gravis is 
probably underdiagnosed, and the prevalence is 
probably higher. Previous studies have shown that 
women are more often affected than men; however, 
now it seems that males over 50 are more often af-
fected. The most common age at onset is before age 
40 in women and after age 50 in men. Treatment 
for myasthenia gravis can cost up to $524 per 
month per prescription. Various surgeries can cost 
up to $6,000. 
(19) Wegener’s granulomatosis (WG) strikes 1 
in every 20,000 to 30,000 people. The disease can 
occur at any age, although peak occurrence is in the 
4th or 5th decade of life. Males and females are af-
fected equally. Wegener’s granulomatosis is a rare 
form of vasculitis, a disease characterized by inflam-
mation of blood vessel walls which can damage vital 
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organs by restricting blood flow. Wegener’s granu-
lomatosis primarily affects the respiratory tract 
(sinus, nose, trachea, and lungs) and the kidneys 
and may involve the joints, eyes, and skin. According 
to the Wegener’s Granulomatosus Association, pa-
tients experience a 26 percent reduction in income 
within the first year of diagnosis, or $9,700,000 per 
year in lost income total for all Wegener’s patients. 
A 1998 survey of Wegener’s patients showed costs 
of $33,517 per patient per year. 
(20) In immune thrombocytopenic purpura 
(ITP), the body mounts an autoimmune attack 
against platelets, particles in the blood essential for 
clotting. People with immune thrombocytopenic pur-
pura are prone to spontaneous hemorrhages, poten-
tially in the brain and other vital organs. According 
to the Platelet Disorders Support Association, treat-
ing immune thrombocytopenic purpura costs from 
several thousand to hundreds of thousands of dollars 
per year, depending on the severity of the case and 
response to treatments. Immune thrombocytopenic 
purpura is a diagnosis of exclusion. Many other dis-
eases and conditions present with low platelets and 
can be confused with immune thrombocytopenic pur-
pura. 
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(21) According to the National Alopecia Areata 
Foundation, over 4,500,000 Americans have alopecia 
areata, alopecia totalis, or alopecia universalis, or 
1.7 percent of any given population. While children 
are affected most frequently, alopecia areata occurs 
in all ages and ethnicities and in males and females. 
Alopecia areata results in hair loss, with many peo-
ple losing all hair over their entire body, including 
eyebrows and eyelashes and the hair on their head. 
This leads to loss of self-esteem and filtering protec-
tion from the elements and cold. Denting and strip-
ping of nails can also occur along with complete nail 
loss. Since no approved treatments exist for alopecia 
areata, insurance companies fail to recognize its se-
riousness and do not cover treatments that could af-
fect the disease’s course. Treatments are often paid 
for by patients or not administered. Diagnosis is dif-
ficult because of lack of knowledge, especially among 
pediatricians and general practitioners who would 
refer patients to specialists. The International 
Pemphigus Foundation estimates the incidence of 
pemphigus and pemphigoid as between 1 and 5 peo-
ple per hundred thousand. These diseases affect all 
races and ethnic groups. Pemphigus and pemphigoid 
are a group of chronic, rare autoimmune blistering 
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diseases of the skin or mucous membranes. They are 
characterized by painful, burn-like blisters or lesions 
covering much of the body that do not heal, and 
they can cause serious infection, difficulty swal-
lowing, and, with cicatricial pemphigoid (CP), blind-
ness. If untreated, pemphigus is usually fatal. 
(22) Polymyositis is an autoimmune disease 
that causes inflammation of the small and medium- 
sized arteries and leads to problems in the muscles, 
joints, intestines, nerves, kidney, and skin. Myositis 
is a neuromuscular autoimmune disease affecting 
about 50,000 Americans. Because it is rare and not 
easily detectable, individuals with myositis are often 
misdiagnosed. It is common for those with myositis 
to go either undiagnosed or misdiagnosed for several 
years before getting a correct diagnosis. The efficacy 
of treatment is diminished by delayed diagnoses and 
the resulting medications required and costs in-
curred are substantially higher. 
(23) More than 5,000,000 people in the United 
States have been diagnosed with psoriasis or psori-
atic arthritis, including children. Psoriasis is a life-
long skin disease that occurs when faulty signals in 
the immune system cause skin cells to regenerate too 
quickly. Extra skin cells build up on the skin’s sur-
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face forming red, flaky, scaly lesions that can itch, 
crack, bleed, and be extremely painful. Psoriasis 
generally appears on the joints, limbs, and scalp, but 
it can appear anywhere, covering some people from 
head to toe. The National Psoriasis Foundation esti-
mates the cost of psoriasis care in the United States 
ranges from $650,000,000 a year to $4,300,000,000 
a year. A recent study estimates that Americans 
with psoriasis lose about 56 million hours of work 
and spend $2 to $3 billion to treat the disease each 
year. 
(24) Sarcoidosis results in small growths of 
blood vessels, cells, and connective tissue and leads 
to problems in the skin, lungs, eyes, joints, and mus-
cles. Sarcoidosis is a disease due to inflammation 
that can attack any organ in the body in any loca-
tion. The disease is characterized by the presence of 
granulomas, small areas of inflamed cells. They can 
be either inside the body or on the body’s exterior, 
appearing as sores on the face or shins. Sarcoidosis 
is most frequently found in the lungs. There are 
about 25,000 cases of sarcoidosis in the United 
States. African-Americans have a higher risk for 
sarcoidosis than do other Americans. However, the 
disease occurs in every race in the United States and 
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throughout the world, including in individuals of Eu-
ropean ancestry. Sarcoidosis occurs predominantly 
between the ages of 20 and 40 years of age. 
(25) Vitiligo affects 1 to 2 percent of the popu-
lation, or about 3 to 6 million Americans, and af-
fects every nationality, race, and gender equally. Vit-
iligo is an autoimmune disease in which the immune 
system mistakenly attacks the pigment cells in the 
skin. It appears as milky white patches and can 
occur anywhere on the body. Usually progressive, it 
can have a devastating impact on a patient’s mental 
state, especially in those with darker skin. Cost var-
ies by treatment. Treatment can cost up to $150 a 
month for topical medications, $2,000 to $3,000 for 
a home unit for phototherapy, and up to $30 per 
doctor’s office visit 2 to 3 times per week. Laser 
treatments can cost $100 to $200 per treatment per 
area. Diagnosis can be extremely difficult, as loss of 
pigment occurs in several other conditions, and phy-
sician education is lacking. It can take several 
months or trips to several different dermatologists 
for a definitive diagnosis. 
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SEC. 3. RESEARCH ON ENVIRONMENTAL TRIGGERS OF 
AUTOIMMUNE DISEASES. 
Subpart 12 of part C of title IV of the Public Health 
Service Act (42 U.S.C. 285l et seq.) is amended by adding 
at the end the following: 
‘‘SEC. 463C. RESEARCH ON ENVIRONMENTAL TRIGGERS OF 
AUTOIMMUNE DISEASES. 
‘‘(a) AUTHORITY.—The Secretary, acting through 
the Director of the Institute and in collaboration with the 
directors of such other national research institutes as the 
Secretary deems appropriate, shall award not less than 2 
grants to eligible entities for the conduct or support of 
research on environmental triggers, such as heavy metals, 
fluorescent
lighting, phthalates, post traumatic stress, 
and pharmaceuticals, that can cause the initiation of auto-
immune diseases in genetically predisposed individuals. 
‘‘(b) GRANT PERIOD.—Each grant under this section 
shall be for a period of 5 years. 
‘‘(c) DEFINITION.—In this section, the term ‘eligible 
entity’ means— 
‘‘(1) a nonprofit organization; 
‘‘(2) an institution of higher education (as de-
fined in section 101 of the Higher Education Act of 
1965); or 
‘‘(3) a Federal, State, or local agency. 
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‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 
is authorized to be appropriated to carry out this section 
$10,000,000 for each of fiscal years 2010 and 2011.’’. 
SEC. 4. GRANTS TO INCREASE AWARENESS OF AUTO-
IMMUNE DISEASES. 
(a) PURPOSE.—The purpose of this section is to in-
crease awareness of autoimmune diseases in order to pro-
vide to the public a more complete understanding of these 
diseases, which affect 5 to 10 percent of the people in the 
United States. 
(b) AMENDMENTS.—Title III of the Public Health 
Service Act (42 U.S.C. 241 et seq.) is amended by insert-
ing after section 317T the following: 
‘‘SEC. 317U. GRANTS TO INCREASE AWARENESS OF AUTO-
IMMUNE DISEASES. 
‘‘(a) GRANTS.—The Secretary, acting through the 
Director of the Centers for Disease Control and Preven-
tion, shall award grants to eligible entities to conduct pub-
lic and professional awareness activities regarding auto-
immune diseases. 
‘‘(b) USE OF FUNDS.—In conducting public and pro-
fessional awareness activities with a grant under this sec-
tion, an eligible entity may do any of the following: 
‘‘(1) Promote increased awareness of early 
intervention and treatment so as to significantly im-
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prove the quality of life for people with autoimmune 
diseases. 
‘‘(2) Target minority communities that may be 
underserved or disproportionately affected by auto-
immune diseases. 
‘‘(3) Target women (who are disproportionately 
affected by autoimmune diseases) so as to help re-
duce the amount of time taken for correct diagnosis 
of such diseases, which often takes more than 1 
year. 
‘‘(c) ELIGIBLE ENTITY.—For purposes of this sec-
tion, the term ‘eligible entity’ means a nonprofit organiza-
tion, an institution of higher education (as defined in sec-
tion 101 of the Higher Education Act of 1965), a Federal, 
State, or local governmental agency, or a media organiza-
tion. 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 
is authorized to be appropriated to carry out this section 
$18,000,000 for each of fiscal years 2010 and 2011.’’. 
SEC. 5. GRANTS FOR EDUCATION ON RELATIONSHIP BE-
TWEEN AUTOIMMUNE DISEASES AND MEN-
TAL ILLNESSES. 
Title III of the Public Health Service Act (42 U.S.C. 
241 et seq.), as amended by section 4, is amended by in-
serting after section 317U the following: 
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‘‘SEC. 317V. GRANTS FOR EDUCATION ON RELATIONSHIP 
BETWEEN AUTOIMMUNE DISEASES AND MEN-
TAL ILLNESSES. 
‘‘(a) GRANTS.—The Secretary, acting through the 
Administrator of the Health Resources and Services Ad-
ministration, shall award grants to eligible entities for the 
education of health care providers on potential links be-
tween autoimmune diseases and cognitive and mood dis-
orders, such as depression. 
‘‘(b) ELIGIBLE ENTITY.—For purposes of this sec-
tion, the term ‘eligible entity’ means a nonprofit organiza-
tion, an institution of higher education (as defined in sec-
tion 101 of the Higher Education Act of 1965), a Federal, 
State, or local governmental agency, or a media organiza-
tion. 
‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—There 
is authorized to be appropriated to carry out this section 
$5,000,000 for each of fiscal years 2010 and 2011.’’. 
SEC. 6. LOAN REPAYMENT PROGRAM REGARDING PHYSI-
CIAN RESEARCH ON AUTOIMMUNE DISEASES. 
Title IV of the Public Health Service Act (42 U.S.C. 
281 et seq.) is amended— 
(1) by redesignating the second section 487F as 
section 487G; and 
(2) by inserting after section 487G (as so re-
designated) the following: 
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‘‘SEC. 487H. LOAN REPAYMENT PROGRAM REGARDING PHY-
SICIAN RESEARCH ON AUTOIMMUNE DIS-
EASES. 
‘‘(a) ESTABLISHMENT.—To the extent and in the 
amounts provided in advance in appropriations Acts, the 
Secretary, acting through the Administrator of the Health 
Resources and Services Administration, shall establish a 
program to enter into contracts with qualified physicians 
under which such qualified physicians agree to conduct re-
search for a period of at least 3 years regarding auto-
immune diseases in consideration of the Federal Govern-
ment agreeing to repay, for each year of service con-
ducting such research, not more than $35,000 of the prin-
cipal and interest of the educational loans of such qualified 
physicians. 
‘‘(b) APPLICATION OF PROVISIONS.—Except as in-
consistent with this section, the provisions of sections 
338B, 338C, and 338E shall apply to the program estab-
lished under this section to the same extent and in the 
same manner as such provisions apply to the National 
Health Service Corps Loan Repayment Program estab-
lished in subpart III of part D of title III. 
‘‘(c) QUALIFIED PHYSICIAN.—For purposes of this 
section, the term ‘qualified physician’ means an individual 
who has received, or will have received by the time of the 
research to be conducted under this section, a degree of 
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doctor of medicine or its equivalent and is licensed to prac-
tice medicine in the United States.’’. 
SEC. 7. RESEARCH AND DATABASE ON BIOMARKERS OF 
AUTOIMMUNE DISEASES. 
Subpart 4 of part C of title IV of the Public Health 
Service Act (42 U.S.C. 285d et seq.) is amended by adding 
at the end the following: 
‘‘SEC. 442B. BIOMARKERS OF AUTOIMMUNE DISEASES. 
‘‘(a) RESEARCH.—The Director of the Institute shall 
conduct or support research on biomarkers of autoimmune 
diseases for the purpose of— 
‘‘(1) preventing such diseases; and 
‘‘(2) making dramatic improvements in the di-
agnosis, treatment, and monitoring of such diseases. 
‘‘(b) DATABASE.—The Director of the Institute shall 
establish and maintain a database on biomarkers of auto-
immune diseases for the purpose of facilitating research 
on, and understanding of, the relationship between such 
biomarkers and the development and severity of auto-
immune diseases. 
‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—There 
is authorized to be appropriated to carry out this section 
$10,000,000 for each of fiscal years 2010 and 2011.’’. 
Æ 
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