DISCLAIMER: As part of our ongoing support for our community, the Hemophilia Federation of America through our office of Public Policy, have established a Legislative Clearinghouse. The clearinghouse will serve as a resource, complete with model bills and supporting documents. By assembling in one-place, we hope to simplify our affiliate’s advocacy efforts.
All of the legislation provided here has been reviewed by the HFA Public Policy team and members of the organization’s Advocacy Committee and have been deemed to be generally consistent with HFA’s mission statement and core principles. The legislation provided here are all model bills. Chapter staff and volunteers are encouraged to consult with local lawmakers to discuss the appropriateness of a given bill in your community. It is possible that legislation similar to a bill you might be considering may have been enacted where you live. Should you choose to utilize one (or more) of the model bills made available through this space, remember that legislation must be tailored to the jurisdiction in which you live. Again, these bills provided below are intended to serve as a resource to guide your conversations locally with respect to political action at the chapter level.
NATIONAL PRIORITIES
Tier IV Pricing Bill – Senate Bill 5000/Valesky (New York Legislature)
SUMMARY: An act to amend the public health law and the insurance law, in relation to cost-sharing, deductible or co-insurance for tier IV prescription drugs; and to amend the executive law, in relation to unlawful discriminatory practice in relation to tier IV prescription drugs.
Treatment Standards bill – House Bill 915/ Gobi (Massachusetts General Court)
SUMMARY: The purpose of this act is to establish qualifications and standards for specialty pharmacies from whom persons with bleeding disorders receive care, institute measures to detect undiagnosed cases of vonWillebrand disease, ensure access to comprehensive hemophilia treatment facilities and specialized diagnostic labs, and guarantee coverage of needed services by third party payers.
OTHER MODEL LEGISLATION
Data Mining Bill PEW CHARITABLE TRUST (The Pharmaceutical Project)
SUMMARY: This act protects the confidentiality of prescription records identifying a doctor or other health care professional licensed to prescribe medications by prohibiting the use of such information for marketing purposes. The act also includes sections on maintaining the confidentiality of prescription data held by state health care programs and ensures that the state is complying with federal restrictions on the transfer and use of Medicaid data.
EMT Treatment Protocol Statewide Basic Life Support Adult & Pediatric Treatment Protocols for EMT-B & AEMT (2008) (New York State Department of Public Health)
SUMMARY: This is an administrative rule adopted by the New York Department of Public Health in 1997 addressing the conduct of EMTs and other emergency personnel for dealing with hemophiliacs in a medical crisis
Extension of HealthCoverage to Dependent Children & Young Adults (COBRA) – House Bill 1/Eachus (Pennsylvania Legislature)
SUMMARY: Establishing the Expanded Adult Basic Coverage Insurance Program. Extends health insurance coverage, at the expense of policyholders, to adult dependent children up to the age of 30.
Extension of Health Coverage to Dependent Children & Young Adults (Insurance) - Assembly bill 3759/Cohen [2004] (New Jersey Legislature)
SUMMARY: This bill, as amended by the committee, requires health insurers to provide for an election of continued coverage by certain dependents, following the termination of dependent coverage at the time the dependents “age-out” of coverage, until their 30th birthday, under health benefits plans issued by health insurers, including hospital service corporations, medical service corporations, health service corporations, commercial insurers, health maintenance organizations and health benefits plans issued pursuant to the New Jersey Small Employer Health Benefits Program, and the New Jersey State Health Benefits Program. Nothing within the provisions of the bill would require an employer to pay all or part of the cost of coverage for any election of this continued coverage.
In order to qualify as a “dependent” for purposes of electing coverage pursuant to the bill, the individual must be: (1) less than 30 years of age; (2) unmarried; (3) without a dependent of his own; (4) a resident of this State or enrolled as a full-time student at an accredited institution of higher education; and (5) not actually provided coverage as a named subscriber, insured, enrollee, or covered person under any other group or individual health benefits plan, group health plan, church plan or health benefits plan, or entitled to benefits under Title XVIII of the Social Security Act.
Genetic Counselor Licensing Act – Illinois Compiled Statutes [225 ILCS 135] (Illinois Legislature)
SUMMARY: The mapping of the human genome continues to result in the rapid expansion of genetic knowledge and a proliferation of testing for genetic conditions. This has created a need for qualified genetics professionals, including genetic counselors, to coordinate an assessment, to deliver acurage informaiton to families, to assist the families in adjusting to the implications of thier diagnoses, and to help ensure that genetic information is used appropriately in the delivery of medical care.
Genetically Handicapped People’s Program – California Code of Regulations, Title 17, Sections 2931-2932
SUMMARY: Genetically Handicapped Persons Program (GHPP) is a health care program for adults with certain genetic diseases The GHPP helps people who are on GHPP with their health care needs. The mission of GHPP is to promote high quality, coordinated medical care through case management services that assure partnership among the Special Care Center team and the client’s community health care providers.
Palliative Care Legislation – House Bill 435/ Special Select Cmt’e on Palliative Care (Vermont General Assembly)
SUMMARY: It is the purpose of this act to improve the quality of palliative care and pain management available to all Vermonters, to ensure that Vermonters are aware of their rights and of the care options available to them, and to expand access to palliative care services for children and adults in this state. The act creates a palliative care and pain management task force to coordinate initiatives in Vermont, help people gain access to services, and propose solutions for addressing gaps in services and educating consumers about their rights under the patients’ bill of rights for palliative care and pain management. And the act directs the board of medical practice and the board of nursing to report by January 15, 2010 regarding their recommendations for improving the knowledge and practice of health care professionals in Vermont with respect to palliative care and pain management, including their consideration of the role of continuing education requirements, strategies for changing health care professionals’ behavior in treating patients with palliative care and pain management needs, methods of improving integration of palliative care and hospice referrals into physician and nurse practices, and ways to inform the public of the training that health care professionals have received in palliative care and pain management.
Presumed Consent for Organ Donation – Bill 61, Trillium Gift of Life Network Amendment Act [2006] (Legislative Assembly of Ontario)
SUMMARY: The purpose of the Bill is to ensure that upon the death of a person, tissue from the person’s body may be removed and made available for transplant into another person’s body and that this may be done without the consent of the person from whom the tissue is removed. Currently, the Act requires that consent be obtained before tissue can be removed from a human body. Under the proposed amendments, consent is no longer required, but a person may object to the removal of the tissue prior to his or her death or a substitute may object on his or her behalf after the death has occurred. If an objection is made, no tissue shall be removed from the body. Part II of the Act sets out the manner and circumstances in which an objection may be made by or on behalf of a person.
