Advocacy Updates

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Advocating for Access to Care at the California Capitol

Health Care Access issues HCC is currently watching include:

  • CCS Whole Child Model managed care pilot program
  • Co-pay accumulator adjustment programs
  • Access to Hemophilia Treatment Centers

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 Declared March Bleeding Disorders Awareness Month

    • As part of the national recognition of March as Bleeding Disorders Awareness Month, HCC worked with Senator Pan’s office on SCR 74 (Pan) Resolution to declare March Bleeding Disorders Awareness Month.  It was approved on the floor of the State Senate on 3/7 with a unanimous vote.  It was then passed in the Assembly on March 31st with 65 co-authors and bipartisan support!!  Thank you to all of the assemblymember co-authors of this very important resolution!  SCR 74 is currently enrolled and on its way to the Secretary of State for signature.
    • To view the full Resolution, click here. To view a video of Senator Pan introducing the Resolution, click here.

      Senator Pan - SCR 74 Presentation

      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

      Many patients with a bleeding disorder rely on financial assistance to pay for their medications.  Now, many ​are finding out from their insurers that the funds must come out of their own pocket before they can receive their medications. Health plan policies called copay accumulator adjustments no longer count copay cards or other financial assistance toward the patient’s annual deductible or their out-of-pocket maximum. 

      Given the multiple negative consequences of these programs, HCC opposes insurance accumulator adjustment programs, copay maximizer programs and similar restrictions that prevent application of funds from pharmaceutical manufacturer copay assistance programs toward patients’ deductibles and OOPM. Furthermore, HCC encourages transparent language for insurance contracts, including programs that limit the use of copay assistance, with clear warnings to employers and patients that such programs increase out-of-pocket costs. 

      Link to NHF video about What is a Copay Accumulator?




      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,