Medical/Disease Research/Clinical Labs

Childhood cancer research, prevention, and survivorship

FDA requirements

Funding for GME programs and emergency departments

Medical/Disease Research/Clinical Labs

Small molecules 340B issues Pharmacy benefit Managers issues General rural health care concerns

Value of Blood/Reimbursement, laboratory developed tests, infectious disease testing

Prevention of elimination of NIH funding FY'2026 LHHS Appropriations Act Early Hearing Detection Intervention Program

general education and advocacy regarding federal support and research investment. current federal regulatory landscape and costs to conduct federal research.

Life Sciences PA supports a robust NIH budget as well as opportunities for Pennsylvania to maintain its leadership role with continued collaborative grant support including the DOD, EDA and NSF. The NIH is the leading investor worldwide in basic scientific research. This funding supports the crucial first step in life sciences investment through discovery and understanding of human biology and physiology. Pennsylvania research institutions and small companies received more than $2 billion in NIH funding in 2023 and, in many cases, hold contractual agreements with the NIH. This research also leads to spin-out companies and technology transfer that perpetuate the cycle of innovation in the Commonwealth. This cut threatens continued research and development in potential treatments and cures for patients. Life Sciences PA joined Pennsylvania patients and researchers at the Rally for Medical Research encouraging Congress to support the highest possible appropriation increase recommended by the medical research community and to complete the FY2026 appropriations process in a timely manner to avoid additional disruptions to the life sciences ecosystem.

Research for Spina Bifida and related conditions

Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Joined Coalition Comments to U.S. FDA for Feedback on Prescription Drug User Fee Act (PDUFA) VIII Stakeholder Consultation Meetings Joined Coalition Comments to FDA Urging Use of the Accelerated Approval Pathway for LGMD Therapies Advocated for the finalization of the Muscular Dystrophy Coordinating Committee action plan

Issues regarding the Committee on Foreign Investment in the United States

FDA Related Issues

Opposing National Institutes of Health (NIH) research cuts

FY26 Funding for NIH, University-based research programs Indirect Cost Payments for Research Graduate Student Support Hospital Financing Per Capita Caps (House/Senate) State Directed Payment Program (House/Senate/CMS) Medicaid Provider Tax (House/Senate/CMS) Medicaid Disproportionate Share Hospital (DSH) (House/Senate) One Big Beautiful Bill Act (House/Senate) Accreditation of Medical Schools Mental Health Impact of Cannabis Usage mRNA Vaccine Research and Cancer

Issues related to clinical trial design and patients obtaining drugs sooner in the course of the trial

Explore grant opportunities and educate on the work of Chestnut Health Systems.

Support for reauthorization of the Biomedical Advanced Research and Development Authority

Biodefense; Biomedical Advanced Research and Development Authority funding; vaccine research, development, manufacturing and marketing; infectious diseases; PAHPA; Labor-HHS-ED appropriations bills; NDAA

Relief from clinical lab reductions in PAMA.

NIH support, funding, NIOSH

FY26 Funding for NIH, University-based research programs Graduate Student Support Hospital Financing Per Capita Caps (Hosue/Senate) State Directed Payment Program (House/Senate/CMS) Medicaid Provider Tax (House/Senate/CMS) Medicaid Disproportionate Share Hosptial (DSH) (House/Senate) One Big Beautiful Bill Act (House/Senate)

FY26 NIH/NCATS Appropriations Funding

Funding for myotonic dystrophy research as part of the FY26 Congressionally Directed Medical Research Program

Support policies to remove barriers to clinical trials, promote research generally, address issues in childhood cancer research including 1509/ S 752 the Accelerating Kids Access to Care Act and HR 1262 the Give Kids a Chance Act

Childhood cancer research, prevention, and survivorship

Legislative and federal agency activities related to the Stem Cell Act, pediatric research, and appropriations issues

Boston Children's Hospital advocates for medical research funding generally (eg NIH) and to assure an emphasis on pediatric research issues and concerns. In the current Congress, we have sought increases in the overall NIH appropriation level, and worked to assure better coordination across NIH institutes for pediatric initiatives. We opposed early proposals to dramatically reduce F&A rates and have supported the JAG proposal to reform the calculation of indirect rates. We have expressed concern about mid-cycle grant terminations. Our informatics research program has provided information on disease surveillance/pandemic preparedness, health IT and interoperability concerns to Congressional leaders.

Federal funding for emergency medicine research activities

General issues pertaining to Section 301 investigations.