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2023 ASH Advocacy Efforts to Ensure Patient Access to Care

During 2023, ASH continued to be highly visible in our advocacy on issues that ensure patient access to affordable health care, including blood donor diversity, maternal health and hematology, drug shortage issues, and access to cell and gene therapies. The following is a summary of advocacy efforts that ASH pursued with the Federal Administration and the U.S. Congress throughout 2023.

Blood Donor Diversity Issues

Maternal Health and Hematology Advocacy

  • ASH sent letters of support to members of Congress who have introduced legislation consistent with ASH’s policy statement on the ASH sent letters of support to members of Congress who have introduced legislation consistent with ASH’s policy statement on the ASH sent letters of support to members of Congress who have introduced legislation consistent with ASH’s policy statement on the ASH sent letters of support to members of Congress who have introduced legislation consistent with ASH’s policy statement on the Right to Maternal Health and Hematology. During the last Congressional session, two bills were introduced: The Women’s Health Protection Act, and The Let Doctors Provide Reproductive Health Care Act. Both pieces of legislation would protect the patient–provider relationship and give physicians, including hematologists, freedom to make evidence-based and lifesaving decisions for patients without government interference. In November, ASH sent a letter of support to the cosponsors of the Let Doctors Provide Reproductive Health Care Act, applauding the reintroduction of that legislation. 
  • In April, ASH joined 33 patient and provider groups in a statement regarding the Alliance for Hippocratic Medicine et al. v. FDA et al., which calls into question the FDA’s approval of mifepristone. The joint statement expressed serious concern regarding legal interference with the federal agency’s ability and authority to review and approve drugs that are critical to health care access for all Americans.
  • In response to a proposed rule on reproductive healthcare privacy issued by the U.S. Department of Health and Human Services Office of Civil Rights, ASH submitted comments on June 14, stating its support for the proposal to strengthen patient–provider confidentiality and prohibit the disclosure of protected health information, among other issues.
  • In October, ASH joined another amicus brief to urge the U.S. Supreme Court to accept a case to protect access to FDA-approved drugs for patients (Alliance for Hippocratic Medicine et al. v. FDA).
  • ASH joined the American Cancer Society, the American Society for Clinical Oncology, and the Leukemia and Lymphoma Society in a policy brief focused on medication access for pregnant patients with cancer and fertility preservation in cancer care. ASH is currently drafting a policy statement entitled, Fertility Management in Hematologic Care.
  • ASH, in collaboration with the Centers for Disease Control and Prevention (CDC), the Foundation for Women & Girls with Blood Disorders, and Sickle Cell Reproductive Health Education Directive, released new fact sheets on preconception care, prenatal care, and postpartum care for women living with sickle cell disease.
  • In December, ASH supported the Iron Deficiency Education and Awareness (IDEA) Act (H.R. 6746), introduced by Representative Yadira Caraveo (D-CO), which seeks to raise awareness of iron deficiency among women and young children. A quote from ASH President Dr. Robert Brodsky was included in the statement issued by Representative Caraveo upon introduction of the legislation.

Engaging with FDA to Ensure Access to Safe and Effective Hematologic Therapies

Access to Safe and Effective Drugs and Therapies

  • ASH continues to have discussions with the Centers for Medicare and Medicaid Services (CMS) as it develops its Cell and Gene Therapy Access Model for SCD; ASH learned that the model is on track to be implemented in 2025, a year ahead of schedule. As a follow up to discussions, the Society sent a letter building on ASH’s advocacy for comprehensive care and outlined a thorough and inclusive “Wishlist” for treatment considerations that are crucial to the success of this model.
    • In mid-May, ASH submitted comments to the Institute for Clinical and Economic Review (ICER) on their draft evidence report assessing the comparative clinical effectiveness and value of two gene therapies for SCD.
  • As part of the Coalition to Improve Access to Cancer Care (CIACC), ASH continues to advocate for the Cancer Drug Parity Act (S. 2039/H.R. 6301), which was reintroduced in the Senate in June and in the House in early November. This legislation seeks to ensure that cancer patients have equal insurance coverage and access to all approved anticancer regimens by requiring any health plan that provides coverage for cancer chemotherapy treatment to provide coverage for orally administered and self-injectable anticancer medications at an out-of-pocket cost no less favorable than that of IV, port administered, or injected anticancer medications.
    • ASH also joined several patient and provider organizations to support legislation in the state of Michigan to help address the financial barriers to cancer care that occur when undue cost sharing requirements are imposed upon individuals and families for oral and self-administered anticancer medications. The legislation passed the state legislature and was signed into law in October.
  • In early October, ASH was invited to join a series of Amicus Briefs in support of the Medicare Drug Negotiation Program that is aimed at lowering the cost of Medicare Part D drugs. ASH has joined 5 briefs to date. (Janssen Pharmaceuticals, Inc. v. Becerra et al., Bristol Myers Squibb Co. v. Becerra et al., AstraZeneca Pharmaceuticals LP et al. v. Becerra et al., Dayton Area Chamber of Commerce et al. v Becerra et al., and Boehringer Ingelheim Pharmaceuticals, Inc. v. U.S. Department of Health and Human Services et al.)