Legislative Alerts
HCC Advocacy Alert
HCC Needs your help to support SB971/Pavley, our standards of service bill!
We urgently need letters of support from home care companies to ensure passage of the bill. A sample letter and fact sheet are attached. Please personalize the attached letter, put it on your letterhead, and send it directly to the Governor's office (via fax) at 916-558-3160. Please make sure Senator Pavley also gets a copy: Sen. Pavley's fax is (916) 324-4823.
Please distribute this letter to home care and specialty pharmacies. Thank you for your support!
Robyn Ireland
Hemophilia Council of California
hccassist@aol.com
FACT SHEET -- SB 971/PAVLEY
Standards for Blood Clotting Products for Home Use
Background:
Just a few decades ago, people with severe hemophilia suffered from uncontrollable internal bleeding, crippling orthopedic deformities and a shortened lifespan. More recently, the production of highly purified blood clotting factors have provided people with hemophilia and other bleeding disorders with the opportunity to lead normal lives, free of pain and crippling arthritis. For most people with these bleeding disorders, this necessitates intravenous injection or infusion of prescription blood clotting products several times a week. Many of these patients infuse at home.
SB 971 would:
Establish standards of service for pharmacies that deliver blood clotting products and related equipment, supplies, and services for home use and would promote access to a full range of essential, cost effective, life-saving, blood clotting products and related equipment, supplies for home use for persons with hemophilia and other bleeding disorders.
Need for Bill:
The state will be initiating contracts on July 1, 2010 with pharmacies wishing to provide clotting factor to patients on Medi-Cal, CA Children’s Services (CCS), and Genetically Handicapped Persons Program (GHPP). Those contracts will contain similar standards as outlined in SB 971.We believe it is critical to ensure that standards are codified in statute for future generations for both the public and private pay patients in CA. The State contracts will only apply to public pay patients.
Have There Been Problems?
We have had instances where pharmacies have left clotting factor on patient’s doorsteps to spoil in the heat. Clotting Factor is an expensive biologic. It makes good sense for the patients and from a fiscal standpoint to have standards in place. It is also important for patients to be able to obtain, in a timely fashion, the clotting factor prescribed by their physician, as there are no generics for clotting factor to date, and patients metabolize clotting factor differently.
Who Supports SB 971?:
Hemophilia Council of CA (sponsor), National Hemophilia Foundation, Region IX Hemophilia Treatment Centers, CA Medical Association, Plasma Protein Therapeutic Assoc, several clotting factor manufacturers and individual pharmacies.
Do The Latest Amendments Remove Opposition From Advocacy Groups?
The Hemophilia Council of CA took amendments from the hospital industry and the pharmacists which are reflected in the June 15th version of SB 971/Pavley. The latest amendments further clarify that the bill only applies to pharmacies and hospital pharmacies that dispense clotting factor for home use.
CA Hospital Association, CA Children’s Hospital Association and CA Pharmacist Association have all removed their opposition to the bill.
Contacts: Terri Cowger Hill, Legislative Advocate – Hemophilia Council of CA (952-3431)
Elise Thurau, Legislative Director – Senator Fran Pavley (651-4023)
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Sample Letter
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August 18, 2010
The Honorable Fran Pavley
California Senate
State Capitol, Room 4035
Sacramento, CA 95814
RE: SUPPORT for SB 971 (Pavley)
Dear Senator Pavley:
Thank you for your leadership in carrying SB 971 for the Hemophilia Council of CA (HCC). SB 971 is an important measure that would establish crucial standards of service for health care entities that deliver blood clotting products to people with hemophilia and other life-threatening bleeding disorders in the home setting.
[Insert company name] is currently providing [describe briefly products] to patients with hemophilia. Just a few decades ago, people with severe hemophilia suffered from uncontrollable internal bleeding, crippling orthopedic deformities and a shortened lifespan. More recently, the production of highly purified blood clotting factors have provided people with hemophilia and other bleeding disorders with the opportunity to lead normal lives, free of pain and crippling arthritis.
For most people with these bleeding disorders, this necessitates intravenous injection or infusion of prescription blood clotting products several times a week.
SB 971 would 1) establish standards of service for businesses like ours that deliver blood clotting products and related equipment, supplies, and services for home use; and would 2) promote access to a full range of essential, cost effective, life-saving, blood clotting products and related equipment, supplies, and high-quality services for home use for persons with hemophilia and other bleeding disorders.
[Insert company name] is in strong support of SB 971 (Pavley) because we care about our patients and want to ensure they receive medically appropriate care. While we strongly support competition in the marketplace, this competition must not drop the level of service to an at-risk and medically fragile population. For example, some pharmacies have not been routinely providing sharps containers to their patients. This is essential for patients in our community, particularly for those who have HIV/AIDS and/or Hepatitis C. SB 971 will insure this and other critical standards of service are met.
It is our assessment that competent competitors are already meeting or exceeding these standards of service. [Insert company name] does not believe this will reduce competition, but will provide appropriate accountability to continue guiding appropriate standards of service in the specialty pharmacy industry.
We fully support SB 971 (Pavley) and urge the Governor to sign this important measure.
Sincerely,
Insert CEO Name
Insert Company Name
Cc: Governor Schwarzenegger
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