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.

Healthcare Action Alert!

We need your help to support continued access to Hemophilia Treatment Centers in California. Read on to learn about the issue and how you can help!

HCC Overview: 340B Federal Drug Pricing Program Issue for 2018

Issue: The Governor’s State Budget proposes to eliminate or limit the use of 340B federal Drug Pricing Program reimbursements within the Medi-Cal Program effective July 1, 2019. The administration has cited the difficulty of overseeing and administering the program and wants to end 340B participation under Medi-Cal. While the budget item has not singled out Hemophilia Treatment Centers, HTCs would be included in this proposal.

The 340B Program allows certain qualified entities, of which HTC’s are included,to buy drugs from pharmaceutical manufacturers at a federally-mandated discount of 17.1%. Without 340B, HTCs would still be able to operate pharmacies and sell blood clotting factor, but they may no longer have the additional revenue provided by the program’s mandated discount to support additional care and services for patients that improve quality of life and health outcomes.

HCC’s Position: HCC opposes the Governor’s 340(b) state budget proposal to the extent that it could limit access to HTCs. HCC strongly supports maintaining patient access to HTCs and the importance of comprehensive care for  those with bleeding disorders. HCC will advocate for patient access while encouraging the HTCs to take the lead in articulating the financing component on this issue.

As a patient advocacy organization, HCC can articulate the patient message but can not comment on specific financing for HTCs. While HCC’s lobbyist is prohibited from setting up direct meetings for the HTCs on this issue per CA law, she can help guide the HTCs and give them strategic advice on what does and does not work in the State Capitol and at Dept. of Health Care Services. HCC’s lobbyist has already begun this process.

HCC represents one unified voice for bleeding disorders patients in California. Your help is essential – we can’t do this without you!

HCC Action Plan: Time is very short to work on this issue. Key hearings will occur in March and April and the budget proposal will be finalized by June. HCC and the HTCs must act quickly! HTCs being active and taking a lead role in this process is crucial to success. To take action on this issue, HCC will:

  1. Brief HTC leadership on our position and next steps. HCC will reach out to NHF to get their position.
  2. Communicate the issue and ways the community can support the HCC’s efforts to chapters and national patient organizations in simple language.
  3. Articulate the patient message and testify at hearings in support of the importance of access to HTCs in improving patient outcomes and quality of life.
  4. Develop an HCC letter to the Assembly and Senate Budget Subcommittees on Health on this issue (cc DHCS Director and Medi-Cal Director).
  5. Actively express HCC’s position of opposing the Governor’s 340B proposal as far as it could reduce patient access to HTCs in the State Capitol via our lobbyist and volunteers
  6. Advocate on this issue through Future Leaders and Legislative Day May 2.
  7. Suggest a list of key people the HTCs should see on this issue along with key time frames.
  8. Use in-person meetings, regular calls, and email communication to coordinate with the HTCs on this issue.
  9. Collect patient stories in support of HTC access. 

What You Can Do:

  1. Share your patient story in support of HTC access. (Download sample letters below)
  2. Come to Legislative Day on May 2 in Sacramento. 
  3. Between the ages of 14 and 22 with a bleeding disorder or a relative? Sign up for Future Leaders April 30 – May 2.
  4. Help share this information throughout the bleeding disorders community.
  5. Utilize Facebook, Twitter and other social media to get the message out.

HTC Access Sample Letters

– Download, personalize, and mail!

Download a Word file here: HCCSampleLetteron340bBudgetIssue_2018_COMBINED

 


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.