SEC. 8. RESEARCH AND AWARENESS CAMPAIGNS WITH RE-
SPECT TO RARE DISEASES AND CONDITIONS 
IN MINORITY POPULATIONS. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.) is amended by inserting after sec-
tion 317V (42 U.S.C. 247b–24) the following: 
‘‘SEC. 317W. RESEARCH AND AWARENESS CAMPAIGNS WITH 
RESPECT TO RARE DISEASES AND CONDI-
TIONS IN MINORITY POPULATIONS. 
‘‘(a) RESEARCH.—The Secretary, acting through the 
Director of the Centers for Disease Control and Preven-
tion, shall conduct or support research and carry out pub-
lic health awareness campaigns with respect to rare dis-
eases and conditions in minority populations (as defined 
in section 409K). 
‘‘(b) AWARENESS CAMPAIGN.—The Secretary shall, 
directly or through grants or contracts, establish a public 
education program in cooperation with existing national 
public awareness campaigns to increase awareness about 
rare diseases and conditions in minority populations 
through culturally and linguistically appropriate informa-
tion campaigns about prevention and management of rare 
diseases and conditions.’’. 
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SEC. 9. FDA SURVEY AND REPORT ON CLINICAL TRIAL DI-
VERSITY. 
Not later than 2 years after the date of enactment 
of this Act, the Secretary of Health and Human Services, 
acting through the Commissioner of Food and Drugs, 
shall— 
(1) conduct a survey of policies and programs 
of the Food and Drug Administration to support an 
increase the availability of clinical trial data on mi-
nority populations, with an emphasis on minority 
populations with rare diseases and conditions; and 
(2) submit to Congress a report containing— 
(A) the findings of such survey; 
(B) the Secretary’s recommendations for 
statutory or regulatory changes to increase the 
availability of such data; 
(C) the Secretary’s recommendations for 
strategies to encourage drug manufacturers to 
address racial equity and inclusion in research 
and development of treatments of rare diseases 
or conditions that disproportionately impact mi-
nority populations; and 
(D) the Secretary’s recommendations for 
strategies to address research and development 
of treatments of rare diseases or conditions that 
disproportionately impact minority populations. 
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SEC. 10. TRIBAL EPIDEMIOLOGY CENTER GRANT PRO-
GRAM. 
Title II of the Indian Health Care Improvement Act 
(25 U.S.C. 1621 et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 227. TRIBAL EPIDEMIOLOGY CENTER GRANT PRO-
GRAM. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Service, shall award grants to Tribal Epidemiology 
Centers and Tribal and Urban Indian Health Centers to 
support clinically and culturally appropriate research and 
other activities with respect to rare diseases and condi-
tions in Native American or Tribal communities. 
‘‘(b) PERMISSIBLE ACTIVITIES.—The activities fund-
ed through a grant under subsection (a) may include co-
ordination of data collection on the prevention, diagnosis, 
treatment, and care of rare diseases and conditions by 
health care professionals serving American Indian and 
Alaska Native populations.’’. 
SEC. 11. MEDICARE REVIEW AND REPORT. 
Not later than 180 days after the date of enactment 
of this Act, the Secretary of Health and Human Service 
shall conduct a review of and submit to Congress a report 
on the following: 
(1) Regulatory barriers under the Medicare pro-
gram under title XVIII of the Social Security Act 
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(42 U.S.C. 1395 et seq.) that inhibit access to the 
treatment of rare diseases for Medicare beneficiaries 
of color, including barriers that inhibit health care 
providers from improving care related to such dis-
eases for such beneficiaries. 
(2) Requirements relating to the furnishing of 
telehealth services under such title insofar as such 
services relate to the treatment of rare diseases. 
Such report shall include any recommendations deter-
mined appropriate by the Secretary based on such review. 
Æ 
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