[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 948 Introduced in House (IH)]
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117th CONGRESS
2d Session
H. RES. 948
Recognizing the extraordinary challenges faced by patients of color
with rare diseases and the need to identify and promote evidenced-based
solutions to alleviate the disproportionate burden of rare diseases on
these communities and supporting the recognition of the last day in
February as ``Rare Disease Day''.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
February 28, 2022
Mr. Butterfield submitted the following resolution; which was referred
to the Committee on Energy and Commerce
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RESOLUTION
Recognizing the extraordinary challenges faced by patients of color
with rare diseases and the need to identify and promote evidenced-based
solutions to alleviate the disproportionate burden of rare diseases on
these communities and supporting the recognition of the last day in
February as ``Rare Disease Day''.
Whereas a rare disease is defined as a condition affecting fewer than 200,000
people in the United States, and over 7,000 individual diseases are
represented in the rare disease community;
Whereas 25,000,000 to 30,000,000 individuals in the United States, nearly 1 in
10, suffer from a rare disease, and the majority of rare diseases start
in childhood;
Whereas rare diseases disproportionately affect people of color, and rare
disorders such as sarcoidosis, sickle cell anemia, Kawasaki disease, and
some forms of lupus are known to affect minority populations at higher
rates than the general population;
Whereas a long history of discrimination and socioeconomic inequality has led to
a health crisis for people of color in the United States, and both
social and physical determinants of health, which disproportionately
negatively affect people of color, contribute to this crisis;
Whereas the rare disease community continues to face hurdles generally and
people of color face additional hurdles in their quest for care, and
flaws across the entire system often have deadly consequences and a
compounding effect on the care that Black, Native American, Hispanic,
Asian, and Pacific Islander individuals with rare diseases receive;
Whereas the lack of information and knowledge about rare diseases by most
medical professionals can result in fewer diagnoses, and it takes an
average of 6 years to get a diagnosis of a rare disease, and even longer
for people of color;
Whereas delays in diagnosis and treatment can result in serious disease
progression, and many patients are misdiagnosed multiple times before
receiving an accurate diagnosis;
Whereas over 95 percent of rare diseases lack Food and Drug Administration-
approved treatments, and people of color have less access to specialists
and innovative therapies;
Whereas people of color make up more than 38 percent of the United States
population, but people of color comprise only 16 percent of clinical
research study participants;
Whereas rare disease specialists are limited in number and are geographically
scattered, compounding the challenge of securing a timely diagnosis and
treatment from knowledgeable professionals, and access to these
specialists, advanced diagnostic tests, and to the limited therapies
available can be prohibitively expensive for many families and
geographically out of reach;
Whereas innovative health management strategies and patient-centered care can
improve access to care and treatment for all individuals living with
rare disease, including people of color;
Whereas improving the state of research and clinical trials to address pipeline
and systemic issues that inhibit communities of color from participating
in research and clinical trials, increasing the number of rare disease
researchers and medical students that come from communities of color,
and increasing the participation of communities of color in research and
clinical trials is necessary to improve care for patients of color with
rare diseases;
Whereas 80 percent of rare diseases are genetic, and some genetic disorders such
as sickle cell anemia, thalassemia, and hATTR amyloidosis are more
likely to occur among people who trace their ancestry to a particular
geographic area;
Whereas 80 percent of the participants in genome-wide association studies are of
European descent, which has devastating implications for diverse
populations with rare disease;
Whereas proper understanding of the genomics of diverse ethnic populations is
critical to increasing the speed of diagnosis for rare diseases;
Whereas, relative to the number of diseases and scope of need, very few
therapies for rare diseases, known as ``orphan drugs'', are being
developed due, in part, to the limited prevalence of populations with
rare disease;
Whereas the genesis of many inequities in the United States health care system
stem from a precursor disparity in research and availability of new
treatments;
Whereas patients and caregivers of color are underrepresented in the rare
disease advocacy groups that have been so important in educating and
providing resources to those newly diagnosed with a rare disease;
Whereas groups like the Rare Disease Diversity Coalition, comprised of rare
disease experts, health and diversity advocates, and industry leaders,
are dedicated to developing and implementing strategies to reduce
inequalities and are working to improve the quality and accessibility of
care by identifying the most pressing problems, and most promising
solutions, in areas that include--
(1) delays in the diagnosis and treatment of rare diseases;
(2) research and clinical studies;
(3) education and engagement of providers, patients, and nursing staff;
and
(4) public policy; and
Whereas continued education of policymakers on the importance of addressing
racial disparities is needed: Now, therefore, be it
Resolved, That the House of Representatives--
(1) recognizes the importance of decreasing rare diseases
among all populations, especially among people of color;
(2) recognizes the unique factors that impact people of
color, including racism and historic bias and its lingering
disparate social, economic, and health effects on these
communities;
(3) recognizes the necessity of spreading awareness and
improving patient and provider education and engagement as a
means to reduce delays in rare disease diagnosis and improving
rare disease treatment;
(4) supports continued research and development of drugs
for rare diseases to address unmet medical needs of patients
with rare diseases; and
(5) supports the designation of ``Rare Disease Day''.
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