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 evaluate changes to the current health system that may affect access and quality of treatment. The 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. The 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 Bills

SB 586

HCC has worked collaboratively with other child health advocates for the past year to ensure protections for our patients would be included in any proposal moving forward –SB 586 is that vehicle.

Key components of SB 586 include:

  • The requirement to use California Children’s Services (CCS) providers, including CCS-paneled specialists, approved hospitals and approved Special Care Centers
  • Continuity of care with current providers for one year with an appeals process, as well as a secondary appeals process with the Director of the California Department of Health Care Services (DHCS)
  • Limit of implementation of the Whole Child Model to the 21 County Organized Health Systems (COHS) only (not any Two Plan Model Counties)
  • The requirement for “meaningful engagement” of families at state and local levels
  • Required evaluation of implementation using CCS-specific metrics
  • Separate CCS-specific rate
  • Extension of existing CCS carve-out elsewhere in the state until 2022 (means business as usual for all counties not utilizing the new COHS model “CCS carve in,” allowing patients to obtain preferred services outside of the “carved in” networks

The clotting factor “carve out” and current reimbursement model for clotting factor in California remains in place and is handled by DHCS Director Jennifer Kent per her administrative authority.

We are appreciative of Director Kent’s willingness to work collaboratively with HCC on the latest provisions of the bill. She worked tirelessly to make improvements to the original proposal and took into account several of our requests including those to add a stronger appeals process for our patients.

SB 586 Support Letter