Advocacy Updates

Advocating for Access to Care at the California Capitol

The bleeding disorders community unites each year for HCC’s annual Legislative Day at the California State Capitol.  For updates on this year’s new VIRTUAL event, sign up here.

Check back here for update on Health Care Access issues HCC is currently watching:

  • CCS Whole Child Model managed care pilot program
  • DHCS blood factor reimbursement change
  • Co-pay accumulator adjustment programs
  • Access to Hemophilia Treatment Centers
  • Covered California insurance expansion

HCC Advocacy Overview

The HCC actively seeks the support of the California legislature for measures that will improve the quality of life of members in our community. Our efforts focus on supporting the current programs that exist, such as GHPP and CCS, as well as evaluating changes to the current health system that may affect access and quality of treatment. HCC supports and encourages all patients with bleeding disorders to seek the expert care of trained professionals at the Hemophilia Treatment Centers throughout the state. HCC also supports choice of treatment and providers, and educates the Hemophilia Community on the range of options for treatment.

The Hemophilia Council of California is actively educating our Legislators and the public on the importance of hemophilia care both for the Bleeding Disorders community and the greater community.

    Current Issues

    California State Senate to Declare March Bleeding Disorders Awareness Month

    • As part of the national recognition of March as Bleeding Disorders Awareness Month, HCC has worked with Senator Pan’s office on SCR 84 (Pan) Resolution to declare March Bleeding Disorders Awareness Month.  It will be approved on the floor of the State Senate later this month.  To view the full Resolution, click here.

    Keep SARs Authorizations with CCS and GHPP Programs Instead of Sending Them to Magellan Medicaid

    • HCC is advocating the importance of keeping access to care for GHPP and CCS patients.  At this point in time, HCC recommends continued discussions with DHCS and leaving pharmacy authorizations with CCS and GHPP programs instead of sending those SARs to Magellan Medicaid on January 1, 2021.  For HCC’s full position one pager on this issue, click here.

    Support CCS Program

    • HCC is advocating for full funding for the CCS Program in the State Budget. CCS provides medical care, case management and funding for children with hemophilia and other rare or chronic health conditions. CCS covers infants and children up to age 21 with eligible conditions.

    Support Genetically Handicapped Persons Program (GHPP)

    • HCC is advocating for full funding for the GHPP. GHPP provides medical care, case management and funding for adults age 21 and older with hemophilia and a few other rare genetic conditions.

    National Updates

    Hemophilia SNF Access Act Passed

    • This critical law will improve access to skilled nursing facilities (SNFs) for people with hemophilia and other bleeding disorders who rely on Medicare.  This new law changes the way that Medicare pays for bleeding disorders treatments.
    • As of October 1, 2021, SNFs can now bill separately for hemophilia and other inherited bleeding disorder treatments for their Medicare patients.  Medicare must pay SNFs to properly treat patients with inherited bleeding disorders. Stays can last up to 100 days under certain circumstances, like after a hospital stay.  Skilled nursing facilities can either provide the bleeding disorder treatment(s) themselves or have a HTC or specialty pharmacy provide it.
    • NHF Factsheet about implications of the law for patients and their families
      Link to Medicare factsheet about which products SNFs can bill for separately
      Link to full NHF article: “NHF Applauds the Implementation of the Hemophilia SNF Access Act
      For more information, or if you have any questions about the implementation of the law, please contact NHF’s Marla Feinstein,