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2020 ASH Advocacy Efforts to Ensure Patient Access to Care


The COVID-19 crisis dominated much of 2020 and issues surrounding the public health emergency were a main focus of ASH’s advocacy and practice-related efforts. Below is a list of ASH’s key advocacy and practice-related efforts related to COVID-19.

  • Telehealth: ASH hosted a webinar in April outlining the additional flexibilities granted for telehealth services. The Society advocated for adequate reimbursement for audio-only services and continues this advocacy effort to help ensure that these services remain available to physicians and patients beyond the public health emergency.
  • Convalescent Plasma: In May, the Society hosted a webinar on the use of convalescent plasma to treat patients with COVID-19.
  • Blood Donations: Throughout the pandemic, ASH has consistently collaborated with the Sickle Cell Disease Association of America, Inc. (SCDAA), as well as the organizations representing blood banks and supplies, to highlight the impact that supply challenges are having on individuals with sickle cell disease, and to promote the need for individuals to continue to safely donate blood.
  • Immigration Policy: ASH submitted comments to the Department of Homeland Security regarding the U.S. Immigration and Customs Enforcement’s proposed change to the process for extending the period of authorized stay for certain nonimmigrant visa classifications. The Society expressed its opposition to the proposal to eliminate duration of status as an authorized period of stay for physicians and researchers who hold J-1 visas citing concern that the proposal was duplicative of an already robust vetting, monitoring, and annual visa sponsorship review process, would disrupt medical specialty and subspecialty training, adversely affect academic medical centers, and impact the delivery of health care.
  • Sickle Cell Disease: On November 20, ASH, the American College of Emergency Physicians (ACEP), and the Emergency Department Sickle Cell Care Coalition (EDSC3) co-hosted a Webinar on Sickle Cell Disease (SCD) and COVID-19 Management in the Emergency Department (ED).  The webinar provided education on how to evaluate and treat individuals living with SCD presenting to the ED with SCD-specific considerations.


  • In March 2020, ASH responded to a request for information on Coordinating Care from Out-of-State Providers for Medicaid-Eligible Children with Medically Complex Conditions highlight the specific needs of children with hematologic diseases and disorders and stressing the need for out-of-state referrals to be completed urgently since many times, unfortunately, these diseases are degenerative.
  • In July 2020, ASH submitted a letter to CMS in support of a proposed rule aiming to reduce barriers within the Medicaid program that would make it easier for payers to implement value-based payment (VBP) arrangements. 

Patient Out-of-Pocket Costs

High drug prices are a major issue facing patients with hematologic conditions and ASH continues to identify and advocate for patient access to safe, affordable, and effective hematologic drugs. Updates on the Society’s major advocacy efforts in these areas are included below.

  • Oral Chemotherapy Parity: While oral and patient-administered forms of chemotherapy have become more prevalent and represent the standard of care for many types of cancers for their convenience, efficacy, and low rate of side effects, they are covered differently than IV drugs, leaving many patients responsible for unsustainable high monthly co-payments.
  • Federal Legislation – As part of the Coalition to Improve Access to Cancer Care (CIACC), ASH continues to advocate for legislation to ensure that cancer patients have equal insurance coverage and access to all approved anticancer regimens including, but not limited to oral and intravenous drugs. Reintroduced in the 116th Congress in March 2019, the bipartisan Cancer Drug Parity Act of 2019 (H.R. 1730/S. 741) would require any health plan that covers cancer chemotherapy treatment to provide coverage for orally administered and self-injectable anticancer medications at a cost similar to the cost of IV, port-administered, or injected anticancer medications. The bills have gained a significant number of cosponsors in 2020 and congressional supporters have attempted to include the main provisions of the bill in various stimulus packages. In December 2020, ASH also joined CIACC in sending a letter highlighting the issue to President-elect Biden’s transition team.
  • State Legislation – Although only federal legislation will guarantee coverage for all cancer patients, as of October 2019, 43 states plus the District of Columbia have passed legislation to limit patient out-of-pocket costs for oral anti-cancer medications. In addition to federal legislation, ASH continues to advocate for oral parity at the state level in Michigan. Legislation has been reintroduced and ASH is working with coalition partners in Lansing, MI to monitor and promote the bill. ASH has sent letters of support for the bill and has activated the Grassroots Network in Michigan urging lawmakers to support this legislation.

Palliative Care

In February, ASH member, Dr. Thomas LeBlanc, joined ASH staff to meet with staff on Capitol Hill regarding this issue of access to palliative blood transfusions for individuals with hematologic diseases or disorders seeking the Medicare hospice benefit. ASH continues to work on addressing this issue and has met with staff in the office of Senator Jacky Rosen (D-NV), the founder of the bipartisan Comprehensive Care Caucus, which focuses on palliative care issues, as well as the offices of the other members of the caucus.

Affordable Care Act

The constitutionality of the Affordable Care Act (ACA) was again brought before the U.S. Supreme Court in early November. The court appears poised to uphold the constitutionality of the law even if the individual mandate, which states that everyone must have health insurance, is struck down. A decision in the case is expected later in the term.

Drug Pricing

In late November, the Administration announced a drug payment model, the Most Favored Nation (MFN) Model, designed to test an innovative way for Medicare to pay no more for high cost, physician-administered Medicare Part B drugs than the lowest price charged in other similar countries. ASH staff has analyzed the potential impact the MFN Model could have on hematologists. While the Model is scheduled to start January 1, 2021, it is unclear due to potential legal issues and the changing Administration, if it will go into effect. Lawsuits to prevent implementation of the Model have already been filed by the Association of Community Cancer Centers, the Global Colon Cancer Association, the National Infusion Center Association, and the Pharmaceutical Research and Manufacturers of America as well as by the Biotechnology Innovation Organization (BIO), the California Life Sciences Association (CLSA), and BIOCOM California.