Senate Study Bill 1294 SENATE FILE BY (PROPOSED COMMITTEE ON HUMAN RESOURCES BILL BY CHAIRPERSON RAGAN) Passed Senate, Date Passed House, Date Vote: Ayes Nays Vote: Ayes Nays Approved A BILL FOR 1 An Act creating a hemophilia advisory committee and providing an 2 effective date. 3 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA: 4 TLSB 2808SC 82 5 jr/es/88 PAG LIN 1 1 Section 1. NEW SECTION. 135N.1 SHORT TITLE. 1 2 This chapter shall be known and may be cited as the 1 3 "Hemophilia Advisory Committee Act". 1 4 Sec. 2. NEW SECTION. 135N.2 LEGISLATIVE INTENT AND 1 5 FINDINGS. 1 6 1. It is the intent of the general assembly to establish 1 7 an advisory committee to provide recommendations on 1 8 cost=effective treatment programs that enhance the quality of 1 9 life of those afflicted with hemophilia and contain the high 1 10 cost of that treatment. 1 11 2. The general assembly finds inherited hemophilia and 1 12 other bleeding and clotting disorders are devastating health 1 13 conditions that can cause serious financial, social, and 1 14 emotional hardships for patients and their families. 1 15 Hemophilia and other bleeding and clotting disorders are 1 16 incurable, so appropriate lifetime care and treatment are 1 17 necessities for maintaining optimum health. Advancements in 1 18 drug therapies are allowing individuals greater latitude in 1 19 managing their conditions, fostering independence, and 1 20 minimizing chronic complications. However, the rarity of 1 21 these disorders coupled with the delicate processes for 1 22 producing factors and administering anticoagulants makes 1 23 treating these disorders extremely costly. 1 24 Sec. 3. NEW SECTION. 135N.3 ESTABLISHMENT AND DUTIES OF 1 25 HEMOPHILIA ADVISORY COMMITTEE. 1 26 1. The director of the department of public health shall 1 27 establish an advisory committee known as the hemophilia 1 28 advisory committee. 1 29 2. The committee shall review and make recommendations to 1 30 the director concerning but not limited to the following: 1 31 a. Proposed legislative or administrative changes to 1 32 policies and programs that are integral to the health and 1 33 wellness of individuals with hemophilia and other bleeding and 1 34 clotting disorders. 1 35 b. Standards of care and treatment for persons living with 2 1 hemophilia and other bleeding and clotting disorders. 2 2 c. The development of community=based initiatives to 2 3 increase awareness of care and treatment for persons living 2 4 with hemophilia and other bleeding and clotting disorders. 2 5 d. Facilitating communication and cooperation between 2 6 persons with hemophilia and other bleeding and clotting 2 7 disorders. 2 8 Sec. 4. NEW SECTION. 135N.4 MEMBERSHIP. 2 9 1. The following persons shall serve as nonvoting members 2 10 of the committee: 2 11 a. The director of public health or a designee. 2 12 b. The director of the department of human services or a 2 13 designee. 2 14 c. The commissioner of insurance or a designee. 2 15 2. The following voting members shall be appointed by the 2 16 director, serving three year terms: 2 17 a. One member who is a board=certified physician licensed, 2 18 practicing, and currently treating individuals with hemophilia 2 19 or other bleeding and clotting disorders. 2 20 b. One member who is a nurse licensed, practicing, and 2 21 currently treating individuals with hemophilia or other 2 22 bleeding and clotting disorders. 2 23 c. One member who is a social worker licensed, practicing, 2 24 and currently treating individuals with hemophilia or other 2 25 bleeding and clotting disorders. 2 26 d. One member who is a representative of a 2 27 federally=funded hemophilia treatment center. 2 28 e. One member who is a representative of an organization 2 29 established under the Iowa insurance code for the purpose of 2 30 providing health insurance. 2 31 f. One member who is a representative of a voluntary 2 32 health organization who currently services the hemophilia and 2 33 other bleeding and clotting disorders community. 2 34 g. One member who is a patient, or caregiver of a patient, 2 35 with hemophilia. 3 1 h. One member who is a patient, or caregiver of a patient, 3 2 with a bleeding disorder other than hemophilia. 3 3 i. One member who is a patient, or caregiver of a patient, 3 4 with a clotting disorder. 3 5 3. The committee appointments may be made not withstanding 3 6 sections 69.16 and 69.16A. 3 7 4. If there is a vacancy on the committee, such position 3 8 shall be filled in the same manner as the original 3 9 appointment. 3 10 Sec. 5. NEW SECTION. 135N.5 MEETINGS. 3 11 1. The committee shall meet no less than four times per 3 12 year and is subject to chapters 20 and 21 relating to open 3 13 meetings and public records. 3 14 2. Members of the committee shall receive no compensation, 3 15 but may be reimbursed for actual expenses incurred in the 3 16 carrying out of their duties. 3 17 Sec. 6. NEW SECTION. 135N.6 REPORT REQUIRED. 3 18 The committee shall, by January 15, 2008, and annually 3 19 thereafter, submit to the governor and the general assembly a 3 20 report with recommendations for maintaining and improving 3 21 access to care for individuals with hemophilia and other 3 22 bleeding and clotting disorders. Subsequent annual reports 3 23 shall report on the status of implementing the recommendations 3 24 as proposed by the committee and on any state and national 3 25 activities with regard to hemophilia and other bleeding and 3 26 clotting disorders. 3 27 Sec. 7. EFFECTIVE DATE. This Act, being deemed of 3 28 immediate importance, takes effect upon enactment. 3 29 EXPLANATION 3 30 This bill creates a hemophilia advisory committee within 3 31 the department of public health. The committee may advise the 3 32 director of public health on a variety of matters, including 3 33 proposed legislative or administrative changes relating to 3 34 hemophilia, standards of care and treatment, the development 3 35 of community=based initiatives to increase awareness of care 4 1 and treatment for persons living with hemophilia and other 4 2 bleeding and clotting disorders, and facilitating linkages for 4 3 persons with hemophilia and other bleeding and clotting 4 4 disorders. 4 5 The committee has 12 members, with the director of public 4 6 health, the director of the department of human services, and 4 7 the commissioner of insurance, or their designees, serving as 4 8 nonvoting members. The director of public health will appoint 4 9 nine voting members representing a variety of stakeholder 4 10 interests. 4 11 The bill has an immediate effective date. 4 12 LSB 2808SC 82 4 13 jr:nh/es/88