Advocacy Updates

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Advocating for Access to Care at the California Capitol

Health Care Access issues HCC is currently watching include:

  • Co-pay accumulator adjustment programs
  • CCS Whole Child Model managed care pilot program
  • 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

    Protecting Patient Copay Assistance

    • Many patients living with hemophilia rely on copay assistance to afford their medications; however certain health plans are preventing such programs from helping them. 
      • Show your support for protecting patient copay assistance by signing this petition here:
    • Copay Assistance Is a Lifeline for Many
      • With deductibles and out-of-pocket costs soaring, many patients rely on financial assistance from drug companies and non-profits to access their medications. This assistance helps patients with hemophilia and other bleeding disorders afford and adhere to their medications.
    • But Insurers Are Cutting Off This Lifeline
      Unfortunately, many insurers are taking assistance intended for patients. They have stopped counting the amount provided by copay assistance programs toward a patient’s deductible and out-of-pocket maximum. This policy is referred to as a “Copay Accumulator Adjustment” policy.
      • Many employer-sponsored health plans also deem certain critical and life-saving prescription drugs as “non-essential,” because of a loophole in the Affordable Care Act which significantly increases out-of-pocket costs for patients.
      • These policies harm individuals with bleeding disorders, making it difficult or impossible for them to get the medications they need.
        Since many of these policies are hidden, most patients are caught off-guard several months into the plan year when their financial assistance has run out, and they learn that they have not met their annual deductible. When they attempt to refill a prescription or get other health care, they may be faced with a bill for thousands of dollars.

    Show your support for protecting patient copay assistance by sending an email or Tweet to your legislator here:

    Visit our blog on the latest updates about the effort to use legislation to protect patient copay assistance here in California!  To learn more about the issue nationwide, visit the All Copays Count Coalition website.  Or you can download our flyer describing What is a Copay Accumulator?

    We’re excited to announce the introduction of Assembly Bill 874 which will require health care plans to apply the value of patient assistance to a patient’s deductible and out-of-pocket maximum expenses, thus reducing out-of-pocket costs. AB 874 is co-sponsored by the Hemophilia Council of California, the California Rheumatology Alliance (CRA) and the Cystic Fibrosis Research Institute (CFRI).

     Sixteen states and Puerto Rico have already banned the use of copay accumulators.  AB 874 will ensure California is next.

     Thank you to Assemblymember Dr. Akilah Weber for championing this patient-centered effort to ensure that All Copays Count!

    March Declared Bleeding Disorders Awareness Month in CA

    On March 9, 2023 Assemblymember Dr. Akilah Weber introduced a ACR 23, an Assembly Resolution declaring March as Bleeding Disorders Awareness Month in CA.

    We thank the Assemblymember for her amazing support of the bleeding disorders community in California!



    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 NBDF video about What is a Copay Accumulator?

    View the latest on the HELP Copays Act and HCC’s support for this key legislation!


    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,