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AB-1488 Health care: genetic diseases.(2017-2018)

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Date Published: 05/30/2017 02:00 PM
AB1488:v95#DOCUMENT

Amended  IN  Assembly  May 30, 2017
Amended  IN  Assembly  May 02, 2017
Amended  IN  Assembly  April 17, 2017
Amended  IN  Assembly  March 28, 2017

CALIFORNIA LEGISLATURE— 2017–2018 REGULAR SESSION

Assembly Bill No. 1488


Introduced by Assembly Member Thurmond

February 17, 2017


An act to add and repeal Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code, relating to health care, making an appropriation therefor, and declaring the urgency thereof, to take effect immediately.


LEGISLATIVE COUNSEL'S DIGEST


AB 1488, as amended, Thurmond. Health care: genetic diseases.
Existing law requires the State Department of Public Health to create programs for the monitoring and treatment of various diseases, including cancer and cardiovascular disease.
This bill, until January 1, 2024, would require the department to establish up to 4 a Sickle Cell Disease Centers, that are responsible for coordinating care of Center to coordinate care for people with sickle cell disease throughout California and for providing to provide specified training and outreach services for patients with sickle cell disease and health care professionals. The bill would require at least 2 of the centers to be located in southern California, one center to be located in northern California, and one center, if established, the center to be located as determined by the department to best serve the population of state residents with sickle cell disease. The bill would specify the criteria used to establish the centers and the responsibilities of established centers. The bill would appropriate $20,000,000 in fiscal year 2017–18 and $15,0000,000 in each of the fiscal years 2018–19 to 2021–22, inclusive, for the program and would specify the manner in which those moneys are to be allocated. the center. The bill would establish the Sickle Cell Disease Center Program Account and specify purposes for which moneys in the account may be used.
This bill would declare that it is to take effect immediately as an urgency statute.
Vote: 2/3   Appropriation: YESNO   Fiscal Committee: YES   Local Program: NO  

The people of the State of California do enact as follows:


SECTION 1.

 The Legislature finds and declares all of the following:
(a) Sickle cell disease (SCD) is an inherited disease of red blood cells that is a major health problem in California and in the United States.
(b) Approximately 100,000 Americans have SCD and approximately 1,000 babies are born with SCD in the United States each year. SCD is also a global problem, with close to 500,000 babies born annually with this disease.
(c) In the United States, SCD is most common in African Americans and in those of Hispanic, Mediterranean, and Middle Eastern ancestry. Among newborns in the United States, SCD occurs in approximately 1 in 300 African Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
(d) More than three million Americans, mostly African Americans, have the sickle cell trait. These Americans are carriers of the sickle cell gene who have inherited the normal hemoglobin gene from one parent and the sickle cell gene from the other parent. Sickle cell trait is not a disease, but when both parents have the sickle cell trait, there is a one in four chance with each pregnancy that their child will be born with SCD.
(e) Although SCD is not highly prevalent in California, the medical, social, and financial burden of the disease on the 7,000 residents living with SCD is great. Children and adults with SCD have high rates of acute illness and hospital utilization, shortened life expectancy, a high risk of sudden death, episodes of extreme, debilitating pain, and challenges with accessing quality health care. As a result, people with SCD may experience poor quality of life. In 2014, there were 6,667 hospital admissions by 1,964 individuals with SCD in California. The average number of admissions was 3.4 per individual, with the length of admission ranging from one day to 213 inpatient days. The cost of hospitalization and emergency room use in 2014 was approximately 350 million dollars.
(f) Children with SCD may have frequent pain episodes, entrapment of blood within the spleen causing enlargement and life-threatening anemia, acute lung complications (acute chest syndrome), priapism, and brain injury. During episodes of severe pain, life-threatening complications can develop rapidly. Spleen enlargement and acute chest syndrome are both life threatening. Children with SCD are also at risk for septicemia (bacterial infection) and brain injury.
(g) One of the most devastating complications for children with SCD is a stroke: either overt, causing paralysis, or silent, causing learning and other occult neurological and developmental problems. Overt stroke occurs in 10 percent of the children with sickle cell anemia prior to their 18th birthday and occurs in infants as young as 18 months of age. Children with SCD at highest risk for stroke are screened, identified, and treated early with monthly blood transfusions for stroke prevention. Students with SCD who have silent strokes may not have any physical signs or symptoms of overt stroke but may have lower educational attainment when compared to children without SCD due to these silent strokes.
(h) Many adults with SCD have acute problems, including frequent pain episodes and acute chest syndrome, that can result in death or prolonged hospitalization. Adults with SCD can also develop chronic problems, including chronic pulmonary disease, pulmonary hypertension, degenerative bone disease of the shoulder and hip joints (bone necrosis), eye disease, and kidney failure. Adults continue to have neuropsychological problems due to strokes suffered as children. Stroke and intracranial hemorrhage in the adult SCD population commonly result in lifelong mental and physical disabilities.
(i) SCD has a significant effect on mortality. In California, the median age of death for individuals with SCD is 42.8 years, with 30 percent of those deaths among individuals under 35 years of age. Causes of death in children and adults include bacterial infection, stroke, and lung, kidney, heart, or liver failure. Bacterial infections and lung injuries are the leading causes of death in children and adults with SCD.
(j) Children and individuals 20 to 30 years of age who have SCD are among the most vulnerable of this population. Hospital admissions and emergency department visits rise dramatically after childhood as patients are transitioned from comprehensive pediatric SCD care into a general medical community that does not have the expertise, adequate resources, or appropriate reimbursement to care for patients with SCD. In 2014, 82 percent of emergency department visits for patients with SCD in California were made to facilities without demonstrated expertise in SCD care.
(k) As a complex disorder with multisystem manifestations, SCD requires specialized comprehensive and continuous lifetime care to achieve the best possible outcome and to reduce complications and cost to the state. Newborn screening, genetic counseling, and education of individuals with SCD and their family members are critical preventative measures that decrease morbidity and mortality, delay or prevent complications, reduce inpatient hospital stays, and decrease overall costs of care.
(l) Currently, one of the most effective treatments to prevent or treat a stroke for a child with SCD is monthly blood transfusion, throughout childhood for many and throughout life for most. This requires the removal of sickle cell blood and replacement with normal blood (exchange transfusion) or the dilution of the sickle cell blood by simple transfusion.
(m) With acute chest syndrome, blood transfusions are usually required and are often the only therapy demonstrated to prevent premature death.
(n) Hydroxyurea is currently the only medicine approved for treatment of SCD. Although over 80 percent of hematology physicians have reported that they know about the recommendations for the use of hydroxyurea, less than half reported that they prescribed hydroxyurea to eligible patients.
(o) The Legislature intends with this act to develop and establish systemic mechanisms to improve the treatment of sickle cell disease in order to prevent complications, improve patient quality of life, and decrease hospitalizations and morbidity for people with this disease in the State of California.

SEC. 2.

 Part 8 (commencing with Section 106100) is added to Division 103 of the Health and Safety Code, to read:

PART 8. Sickle Cell Disease Centers

106100.
 (a) The State Department of Public Health shall establish a Sickle Cell Disease Center pilot program. The pilot program shall do all of the following:
(1) Create a competitive grant program Award grant funding to establish three or four a Sickle Cell Disease Centers, Center, as provided in Section 106101. Grant funding shall be allocated as provided in subdivision (b).
(2) Enable coordination between the established centers center and community providers to improve the care of people who have sickle cell disease and to establish a seamless sickle cell treatment program in the state.

(3)Evaluate the overall program on a biannual basis.

(3) Collect data on the outcomes for patients treated by the center.
(b) (1) On or before January 1, 2021, the department shall report to the Legislature and the Governor’s office on the efficacy of the program and the effect of the program on the treatment of sickle cell disease in the state, including, but not limited to, improved outcomes for patients and reduced costs to public and private insurers due to the pilot program.
(2) The report required pursuant to this subdivision shall be submitted in accordance with Section 9795 of the Government Code.
(c) (1) There is hereby established in the State Treasury the Sickle Cell Disease Centers Center Program Account, which is continuously appropriated to the State Department of Public Health. Account. The moneys in the account shall be used are available, upon appropriation by the Legislature, to fund the grant program established by this part. The department may use the moneys to pay for the actual and reasonable administrative costs relating to the establishment of the grant program and for any actual and reasonable costs required by this part. Subject to an appropriation, moneys may be used for the following purposes:

(2)In each of the fiscal years 2017–18 to 2021–22, inclusive, the following allocations shall be made:

(A) Each Administration of the established center shall receive one million five hundred thousand dollars ($1,500,000) per fiscal year for participation in the pilot program. center.
(B) One hundred thousand dollars ($100,000) per year shall be used for the The State Sickle Cell Disease Conference, as required by paragraph (11) of subdivision (a) of Section 106102.

(3)The following amounts are allocated to the department in the 2017-18 fiscal year for use at any time prior to January 1, 2023:

(A)One million dollars ($1,000,000), which may be distributed by the department, upon request by the centers, for the acquisition

(C) The acquisition of major purchase items for use at the center, including, but not limited to, specialized medical equipment for the treatment of sickle cell disease.

(B)One million dollars ($1,000,000), which may be distributed by the department, upon request by the centers, to aid in the

(D) The transportation of patients to access the centers. center.

(C)Two hundred fifty thousand dollars ($250,000) to defray the

(E) The actual travel and attendance costs of the quarterly meetings of the advisory committee required pursuant to Section 106104.

(4)In the 2017–18 fiscal year, one million dollars ($1,000,000) shall be allocated for the development of the Internet Web-based information center required pursuant to Section 106103. For fiscal years 2018–19 to 2021–22, inclusive, five hundred thousand dollars ($500,000) shall be allocated each year for the

(F) The development, continued operation operation, and maintenance of the Internet Web-based information center. center required pursuant to Section 106103.

(5)In the 2017–18 fiscal year, five hundred thousand dollars ($500,000) shall be allocated for the

(G) The development of a database to track patients with sickle cell disease, including the location and number of persons with the disease, hospitalization, rehospitalization, and emergency room use by those patients. For fiscal years 2018–19 to 2021–22, inclusive, two hundred fifty thousand dollars ($250,000) shall be allocated each year for this purpose.

(6)

(2) The remaining funds may also be used by the department, in its discretion, for any or all of the following:
(A) Grants to health care providers or clinics that are not affiliated with an the established center but that provide care to patients with sickle cell disease. If grants are awarded pursuant to this subparagraph, the recipients shall do all of the following:
(i) The provider or clinic shall have an affiliation with one ofthe three centers center for consultation.
(ii) A provider or clinic shall demonstrate the ability to refer patients to pediatric or adult subspecialists for sickle cell care.
(iii) A pediatric provider or clinic shall have the ability to perform transcranial Doppler studies on young children 30 months of age and younger or be able to refer patients for that evaluation.
(iv) A provider or clinic that is treating a patient who does not have a confirmed diagnosis of sickle cell disease shall have the diagnosis confirmed at a central hemoglobinopathy laboratory.
(v) A provider or clinic shall have the ability to refer a patient for red cell transfusion for primary or secondary prevention of stroke to a facility that adheres to the standards of care for sickle cell red cell transfusion by simple or automated red cell exchange.
(vi) A provider or clinic shall demonstrate the ability to evaluate, prescribe, and monitor patients who are prescribed hydroxyurea or other medications used to treat sickle cell disease, in consultation with the affiliated center.
(vii) At least one physician from the provider or clinic shall attend at least one teaching seminar or webinar given by a center every year that funding is received. Attendance at the State Sickle Cell Disease Conference shall fulfill this requirement.
(B) Grants for the establishment and maintenance of a telehealth system or an online consultation service to support patients with sickle cell disease and the health care professionals who treat them.
(C) Hemoglobinopathy testing to confirm diagnosis of sickle cell disease in patients in California and parents of children known to have sickle cell disease.
(d) Any moneys remaining in the Sickle Cell Centers Disease Center Program Account that are unencumbered as of January 1, 2024, shall be returned to the General Fund.

106101.
 (a) The department shall provide competitive grants to establish three or four a Sickle Cell Disease Centers. Two centers shall be established in southern California, one center shall be established in northern California, and one center, if established, Center. The center shall be established in a location to be determined by the department to best serve the population of state residents with sickle cell disease.
(b) In order to receive a grant under this part, an applicant shall demonstrate all of the following:
(1) That the applicant has at least 150 current patients who have sickle cell disease, including both adult and pediatric patients.
(2) An affiliation with a health care facility, licensed pursuant to Section 1250, that cares for patients with sickle cell disease. The health care facility shall have the capability for tertiary acute inpatient care, automated red cell exchange transfusion, intensive care, and emergency care.
(3) Access to a genetic counselor and trait counselor, each at least 3/5 time, onsite for adult and pediatric patients.
(4) Full-time employment of a pediatric social worker and an adult social worker that patients can access during the workweek.
(5) The facility is accessible to the community via public transportation or other means, including coordinating with community organizations to provide access to the center.
(6) Access to neuropsychological testing for children and adults who have sickle cell disease and access to a psychologist, at least 3/5 of the time, to serve both pediatric and adult patients.
(7) A program for transitioning sickle cell patients from pediatric care to adult care.
(8) A full-time pediatric hematology physician or pediatrician for pediatric patients and a full-time adult hematologist or internist for adult patients.
(9) Full-time nursing support by either a registered nurse or a nurse practitioner with a focus on pediatric hematology-oncology for pediatric patients and adult hematology for adult patients.
(10) The ability to perform transcranial Doppler studies for children under three years of age to screen for stroke risk and to provide appropriate care and services for children who are at risk for stroke.

106102.
 (a) Each The established center shall do all of the following:
(1) Provide primary care for patients with sickle cell disease. Primary care includes either performing any services required or the ability to refer the patient to a specialist, if needed.
(2) Perform outreach to the community to improve access to care and educate people who have sickle cell disease and sickle cell trait, including health care navigation and patient education. The center shall engage in and support community programs relative to sickle cell disease treatment and education.
(3) Identify people who have sickle cell disease in its catchment area and collaborate with the other centers to support a statewide database of people who have sickle cell disease.
(4) Provide sickle cell disease and trait counseling for children and adults adults, and make these services available to the community.
(5) Provide transfusion services for chronic transfusion therapy at least five days a week, including automated red cell exchange transfusion. Transfusion services shall have the ability to monitor iron in transfused patients, provide iron chelation therapy, and have the capability for red cell genotyping or phenotyping. The center shall have access to a blood center with the ability to provide phenotypically matched red cells for transfusion.
(6) Provide outpatient pain management for persons with sickle cell disease in a day treatment or outpatient facility.
(7) Collaborate with the other centers to establish Establish state guidelines for the best standards of care for people who have sickle cell disease. The standards shall be made available to all health care practitioners and health care facilities in the state.
(8) Provide outreach to, and training of, health care and social service professionals at all levels who provide care and services for people with sickle cell disease.
(9) Provide collaborative support to practitioners who care for adult and pediatric patients who have sickle cell disease through an online consultation system, seminars, and webinars.
(10) Collaborate with the other centers, the department, department and the sickle cell community to develop and maintain the Internet Web-based information center, as specified in Section 106103.
(11) Collaborate with the other centers to coordinate Coordinate and fund the annual State Sickle Cell Disease Conference, hosted at each of the centers in rotation. Conference. The conference shall be open to all health care practitioners and shall provide continuing education units for physicians, nurses, and other health care professionals.
(12) Establish a telehealth system or an online consultation service to serve patients and consult with medical providers at remote sites.
(b) The center shall have an identified medical director who oversees the center and is responsible for teaching and training programs for health care professionals in the center. The medical director shall assess the quality and performance of the center on a biannual basis and the staff on an annual basis and shall formally report the progress to the department.

106103.
 The department, with the assistance of the established centers, center, shall establish and maintain an Internet Web-based information center that has all of the following capabilities:
(a) Provide information on sickle cell disease and sickle cell trait to the public, including options for diagnosis, treatment, and counseling.
(b) Provide information about the centers, center, including contact information, services, and outreach and education programs for patients and health care professionals.
(c) Provide a portal for health care providers to access information and resources relating to the treatment of adult and pediatric patients with sickle cell disease. The provider portal shall include a way for health care professionals who are not near a the center to communicate with a health care professional in one or more centers on a real-time or similar basis through an online consultation service.
(d) Provide a portal for patients to access information and resources relating to treatment and counseling. The patient portal shall include a way for patients to communicate with a health care or counseling professional in one or more centers on a real-time or similar basis.

106104.
 (a) The department shall convene an advisory committee consisting of the following:
(1) One individual who has sickle cell disease.
(2) One parent of a child who has sickle cell disease.
(3) One nurse practitioner or registered nurse with a minimum of five years of experience caring for patients with sickle cell disease.
(4) One social worker with a minimum of five years of experience providing client services to people who have sickle cell disease.
(5) One representative from a community outreach program or community-based organization with five years of experience working with the sickle cell community.
(6) One adult-focused hematologist or a pediatric hematologist-oncologist with a minimum of 10 years of experience in caring for patients with sickle cell disease.
(7) One primary care physician with a minimum of 10 years of experience in caring for patients with sickle cell disease.
(8) One individual from the department with experience in developing, implementing, monitoring, and evaluating state medical institutions.
(b) The advisory group shall review the implementation of this part by the department and the established centers center and shall provide recommendations to the department to improve services and supports for the sickle cell patient and health care community.

106105.
 This part shall remain in effect only until January 1, 2024, and as of that date is repealed.

SEC. 3.

(a)For the 2017–18 fiscal year, the sum of twenty million dollars ($20,000,000) is hereby appropriated from the General Fund to the Sickle Cell Centers Program Account, to be used by the State Department of Public Health for the implementation of the Sickle Cell Disease Center pilot program (Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code).

(b)For each of the 2018–19 to 2021–22 fiscal years, inclusive, the sum of fifteen million dollars ($15,000,000) is hereby appropriated from the General Fund to the Sickle Cell Centers Program Account, to be used by the State Department of Public Health for the implementation of the Sickle Cell Disease Center pilot program (Part 8 (commencing with Section 106100) of Division 103 of the Health and Safety Code).

SEC. 4.SEC. 3.

 This act is an urgency statute necessary for the immediate preservation of the public peace, health, or safety within the meaning of Article IV of the California Constitution and shall go into immediate effect. The facts constituting the necessity are:
In order to provide critical and potentially life-altering services to individuals living with sickle cell disease, it is necessary that this act take effect immediately.