Title: 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".
Policy area: Health

Summary:
This resolution supports the designation of Rare Disease Day and recognizes the importance of decreasing rare diseases, especially among people of color.

[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

_______________________________________________________________________

                               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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