FYI from the NHLBI Index
September 2011: Vol. 12, Issue 2
In the News
News from Capitol Hill
News from Capitol Hill
Pulmonary Fibrosis Legislation Introduced
On July 12, 2011, Senator Christopher Coons (D-DE) and Representative Erik Paulsen (R-MN) introduced the Pulmonary
Fibrosis Research Enhancement Act (S. 1350/H.R. 2505) to expand the research, prevention, and awareness activities of
the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) with respect to
pulmonary fibrosis (PF). The companion bills would direct the Secretary of the Department of Health and Human
Services (DHHS), acting through the Director of CDC, to establish a national PF advisory board, the membership of
which would include a representative from the NIH. The bills also would require the CDC to establish a national
PF registry. In addition, the legislation would encourage the Director of the National Heart, Lung, and Blood
Institute (NHLBI) to expand, intensify, and coordinate activities of the Institute with respect to research on PF.
Hereditary Hemorrhagic Telangiectasia Legislation Introduced
On June 3, 2011, Representative Elton Gallegly (R-CA) introduced H.R. 2123, the Hereditary Hemorrhagic Telangiectasia
Diagnosis and Treatment Act of 2011. On June 9, 2011 Senator Tim Johnson (D-SD) introduced a companion measure, S. 1167.
The bills would require the DHHS Secretary to establish and implement, in consultation with the Directors of the NIH and
the CDC, a hereditary hemorrhagic telangiectasia (HHT) initiative to assist in coordinating activities to improve early
detection, screening, and treatment of people who suffer from HHT. The initiative would focus on advancing research and
increasing physician and public awareness of HHT. The bills also would establish an HHT coordinating committee to develop
and coordinate implementation of a plan to advance research and understanding of HHT.
Pulmonary Hypertension Legislation Introduced
On May 10, 2011, Representative Kevin Brady (R-TX) introduced H.R. 1810, the Tom Lantos Pulmonary Hypertension Research
and Education Act of 2011. Among those provisions related to research, H.R. 1810 would direct the DHHS Secretary, through
the NHLBI Director, to continue to encourage basic research on the causes of pulmonary hypertension (PH), including the
relationship between scleroderma and sickle cell anemia and PH, clinical research, and training of new clinicians and
investigators with expertise in PH. The bill would also require the NIH biennial report to include information on the
status of PH research at the NIH. Senator Robert Casey (D-PA) introduced an identical bill, S. 775, on April 8.
Scleroderma Research and Awareness Legislation Introduced
On May 2, 2011, Representative Lois Capps (D-CA) introduced H.R. 1672, the Scleroderma Research and Awareness Act of 2011.
The bill would amend the Public Health Service Act to authorize the Director of the NIH to expand, intensify, and coordinate
the agency’s activities related to scleroderma. The bill also would authorize the DHHS Secretary to carry out a public
awareness education campaign. Senator Kristen Gillibrand (D-NY) introduced similar legislation, S.649, on March 17, 2011.
Please send us your feedback, comments, and questions by using the appropriate link on the page, Contact the NHLBI.
Note to users of screen readers and other assistive technologies: please report your problems here.