Why It Matters

Orchard Therapeutics North America Inc. filed an amended lobbying disclosure filing for the first quarter of 2026, reporting $470,000 in in-house lobbying activity. The gene therapy company, a subsidiary of Japan's Kyowa Kirin, has been a consistent presence in federal lobbying activity since 2024, focused on pediatric rare disease policy and Medicaid reimbursement.

Orchard's flagship U.S. product, Lenmeldy, is a gene therapy for metachromatic leukodystrophy, a rare and fatal disease affecting young children. It carries a price tag of approximately $4.25 million, making Medicaid reimbursement policy a central concern for the company. State Medicaid programs are expected to be a significant part of the payer mix for patients who qualify.

The company's lobbying activity has consistently targeted legislative pathways that would improve access and reimbursement for high-cost gene therapies and strengthen incentives for rare pediatric drug development.

By the Numbers

The first quarter 2026 amended filing reports $470,000 in lobbying expenditures. This is the second first-quarter 2026 disclosure filed by Orchard. A separate first quarter 2026 report, filed April 13, 2026, reported $350,000. Combined, the two first quarter filings total $820,000.

Orchard conducts all lobbying in-house. There are no outside lobbying firms on record.

The lobbying team for this amended filing includes two lobbyists:

  • Christina Hartman, who has been the primary in-house lobbyist for Orchard since at least mid-2024. Across 10 filings for Orchard, she has been associated with $2,410,000 in total disclosed lobbying expenditures. She previously lobbied for Genetix Biotherapeutics Inc., where she worked on the Medicaid Value-Based Purchasing for Patients (MVP) Act and Medicaid drug rebate program rules.
  • A second lobbyist (ID: 386578) who appears to have joined Orchard's lobbying team recently. Their earliest appearance in Orchard disclosures is April 2026, across two first quarter filings totaling $820,000.

Neither lobbyist has a congressional staff record on file.

Looking at the prior year of lobbying activity, Orchard filed six disclosures between April 29, 2025 and April 29, 2026, totaling $1,950,000 in reported in-house spending. Quarter over quarter, the disclosed amounts have been rising. The fourth quarter 2025 report listed $260,000. The third quarter 2025 report reported $220,000. The second quarter 2025 report also reported $220,000. A later-filed amendment to the second quarter 2025 disclosure reported $430,000.

The Agenda

This amended filing lists no specific issues lobbied and cites no legislation. However, Orchard's prior disclosures provide a clear picture of the issues the company has been engaged on. Across multiple filings going back to mid-2024, Orchard has consistently lobbied on:

  • S. 932 / H.R. 1262, the Give Kids a Chance Act of 2025, which would reauthorize the FDA's Rare Pediatric Disease Priority Review Voucher program.
  • S. 752, the Accelerating Kids' Access to Care Act, which addresses Medicaid access for pediatric patients.
  • H.R. 7871, the MVP Act, which would allow Medicaid to structure payments for high-cost therapies based on patient outcomes.
  • Appropriations for Newborn Screening, which could expand the identification of children eligible for early intervention with therapies like Lenmeldy.

The companion first quarter 2026 report, filed April 13, 2026, lists the Accelerating Kids' Access to Care Act, the Give Kids a Chance Act, and the MVP Act as active lobbying priorities.

Broader Context

Congressional activity on several of these issues has been notable in the past year.

On December 2, 2025, Rep. Gus Bilirakis (R-FL-12) announced House passage of the Give Kids a Chance Act, calling it "a bipartisan effort to give children battling cancer and rare diseases a real chance at life." The legislation would restore the Rare Pediatric Disease Priority Review Voucher program, which provides a financial incentive for companies developing treatments for rare pediatric conditions.

In March 2026, Sen. Tim Scott (R-SC) urged the FDA to reconsider a decision denying a Priority Review Voucher for a gene therapy for sickle cell disease, citing the need for policies that "encourage innovation and give patients access to life-saving treatments." Earlier, Scott and Sen. Cory Booker (D-NJ) introduced a bipartisan resolution recognizing gene therapies as curative treatments for sickle cell disease.

In September 2025, Rep. Doris Matsui (D-CA-7) and a bipartisan group reintroduced the Stem Cell Therapeutic and Research Reauthorization Act, focused on bone marrow and cord blood transplants for patients with blood cancers and rare blood disorders.

At the federal payment level, the Centers for Medicare & Medicaid Services (CMS) launched its Cell and Gene Therapy Access Model in January 2025, under which states and manufacturers negotiate outcome-based pricing for gene therapies. The model is directly relevant to how a product like Lenmeldy would be reimbursed under Medicaid.

The Bottom Line

Orchard Therapeutics has been a consistent and growing presence in federal lobbying since late 2024. The company's in-house operation is focused on a narrow but consequential set of issues, namely pediatric rare disease incentives, Medicaid access, and outcome-based payment structures for gene therapies. The amended first quarter 2026 filing discloses no specific issues, but the broader pattern of the company's lobbying activity is well-documented across prior disclosures.

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