Advocacy

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.

Federal Healthcare Action Alert

Don’t let up the pressure on the U.S. Senate – make your voice heard on the federal healthcare bill! Find tools, resources, and an issue statement here:

Advocacy Update: CA State Budget and Senate Healthcare Bill

Current Issues

Support CCS Program + Support SB 152 (Hernandez)

  • 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. (SECURED IN STATE BUDGET)
  • HCC supports allowing more time – no sooner than July 2018 – for implementation of CCS kids into Medi-Cal Managed Care Plans per last year’s SB 586 (Hernandez) known as the new CCS Whole Child Model Program. (SECURED IN STATE BUDGET)
  • HCC also supports SB 152 (Hernandez) in 2017. Current law requires an evaluation of the CCS Whole Child Model Program under Medi-Cal Managed Care. It also requires a report to the Legislature. SB 152 would instead require the department to provide that evaluation and report to the Legislature by the later of January 1, 2021 or 3 years from the date when all counties under the statute have implemented their CCS Whole Child Model Program. (Location of SB 152: Assembly Floor)

Issue #2: 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. (SECURED IN STATE BUDGET)

Issue #3: Support AB 613 (Nazarian) – Blood Donations

  • AB 613 would bring California’s laws in line with the majority of other states that allow a total protein test to be administered by trained and qualified plasma donation center employees.
  • The bill ensures that trained professionals are utilized to the highest level of their
    job skills resulting in more efficient donor screening (Location of AB 613: Senate Appropriations Committee: July 10th)

Issue #4: Support SCR 33 (Pan) Declaring March 2017 Bleeding Disorders Awareness Month in California

  • Thanks to Dr. Pan and the Legislature for supporting our efforts and educating
    the broader public about hemophilia and related bleeding disorders.