Call to Order and Roll Call
Thefourth meeting of the Interim Joint Committee on Health and Welfare was held on Wednesday, September 17, 2014, at 10:00 a.m., at the Foundation for a Healthy Kentucky, 1640 Lyndon Farm Court, Suite 100, Louisville, Kentucky. Senator Julie Denton, Co-Chair, called the meeting to order at 10:06 a.m., and the secretary called the roll.
Members:Senator Julie Denton, Co-Chair; Representative Tom Burch, Co-Chair; Senators Joe Bowen, Tom Buford, Perry B. Clark, David P. Givens, Denise Harper Angel, Jimmy Higdon, and Reginald Thomas; Representatives Julie Raque Adams, Robert Benvenuti III, Bob M. DeWeese, Kelly Flood, Tim Moore, Darryl T. Owens, David Watkins, Russell Webber, and Susan Westrom.
Guests: Susan Zepeda, PhD, CEO, and Doug Hogan, Foundation for a Healthy Kentucky; Rick Clewett; Maria Koetter, Director of Sustainability, Louisville Metro Government; Susan Bush, Head of Environmental Planning, Lexington; Jamie Ennis Bloyd, mother of child with Burkitt’s Lymphoma; Dr. John Perentesis, MD, Cincinnati Children’s Hospital Medical Center; Dr. John A. D’Orazio, MD, PhD, University of Kentucky; Dr. Ken Lucas, MD, Norton/Kosair/University of Louisville; Kraig E. Humbaugh, MD, MPH, Senior Deputy Commissioner, Department for Public Health, and Colleen Hagan, Legislative Director, Cabinet for Health and Family Services; Jackie Richardson, Executive Director, Commission for Children with Special Health Care Needs; Michelle Sanborn, Children’s Alliance; Beverly and Larry Ennis; Cindy Murray, Jeff Schnobrich, Sheila Hardy, and Jay Hartz, Legislative Research Commission; Bryan Sunderland and Ashli Watts, Kentucky Chamber of Commerce; Steve Houghland and Shane Hall, Passport Health Plan; Ellen Kershaw and Heathe Wehreim, American Lung Association; Donna Mullins, Office of Health Policy, Cabinet for Health and Family Services; Marie Cull, Cull & Hayden; Mary Corbett and Talley Russell, Norton Healthcare; Tonya Chang, American Heart Association; Debby Phillips and Shane Stuber, Leukemia & Lymphoma Society; Eric Clark, Kentucky Association for Health Care Facilities; Max Wise and Carter Wise; Betsy Jones, Smoke-free Kentucky; Jill Lee and John McGuire, Kentucky Inspector General’s Office; Justine O’Flynn; Kosair Children’s Hospital; Bart Baldwin; Steve Bing, Kentucky Local Health Department Association; Jackie Richardson, Commission for Children with Special Health Care Needs; Allyson Taylor; Sheila Schuster, Kentucky Mental Health Coalition; Sarah S. Nicholson, Kentucky Hospital Association; David Bolt; Cara Stewart, Kentucky Equal Justice Center; Pam Jenkins, Baptist Health/Kentucky Blood Center; and Bob Babbage.
Approval of the Minutes
A motion to adopt the minutes of the August 4, 2014 meeting was made by Senator Harper Angel, seconded by Representative Burch, and adopted by voice vote.
Legislative Hearing on Executive Order 2014-618 relating to Advisory Council on Autism
A motion to accept Executive Order 2014-560 was made by Senator Clark, seconded by Representative Burch, and approved by voice vote.
Consideration of Referred Administrative Regulations
The following administrative regulation were available for consideration and placed on the agenda, having been referred to the Committee on September 3, 2014, pursuant to KRS 13A.290(6): 900 KAR 6:030 – provides for the adjustment of expenditure minimums for capital expenditures and major medical equipment; 900 KAR 6:125 – establishes the requirements for submission of annual survey data to the Cabinet for publication of the orderly administration of the Certificate of Need (CON) Program; 902 KAR 55:045 – exempts prescription products from the licensing, distribution, recordkeeping, and reporting provisions of KRS Chapter 218A if the products have received approval as an exempt prescription product pursuant to 21 C.F.R. 1308.32; 902 KAR 55:090 – exempts certain anabolic steroid products from the licensing, distribution, recordkeeping, and reporting provisions of KRS Chapter 218A if the products have received approval as an exempt anabolic steroid product pursuant to 21 C.F.R. 1308.34; and 902 KAR 95:040 – establishes general requirements for the certification of individuals who perform radon measurement, radon mitigation, or laboratory analysis. A motion to adopt the administrative regulations as amended was made by Senator Clark, seconded by Representative Burch, and adopted by voice vote.
Pediatric Cancer Awareness
Jamie Ennis Bloyd, mother of child with Burkitt’s Lymphoma, stated that on March 3, 2014, her son, Paxton, was diagnosed with stage 4 Burkitt’s lymphoma, but with treatment, is now a cancer survivor. Children should not have to think about death. There is a need for more awareness of childhood cancer. The Kentucky budget reflects priorities by spending $10 million for inmates’ dental care, but none for pediatric cancer. Funds need to be allotted for pediatric cancer in the budget. Everyone needs to work in collaboration to find a cure for pediatric cancer.
Dr. John Perentesis, MD FAAP, Professor & Kleisinger Chair for New Cancer Treatments, Chief of Oncology, Cincinnati Children’s Hospital Medical Center, stated that cancer is the leading cause of disease-related death in children. The impact of curing childhood cancer has dramatic effects. The average age of a child diagnosed with cancer is six years old, and the average number of years lost to cancer is 71. The average age for an adult diagnosed with cancer is 67, and the average number of years of life lost to cancer is 15. Progress in childhood cancer has been the result of federal funding and a collaborative national network between the National Cancer Institute Consortium and the Children’s Oncology Group. Federal funding for cancer research and new treatments is 4 percent for pediatric cancer, and 96 percent for adult cancer. Progress in curing childhood cancer has stalled and funding has been cut. Even when therapy works well, it is not easy on the patient. There needs to be a better approach to research. Regional children’s hospitals strive to advance a new model for collaboration and research advances.
The Cincinnati Children’s Hospital is one of the largest pediatric health systems with approximately 600 registered beds and more than 1.1 million patients in 2013. The hospital is a high technological research and development non-profit focused on improving child health. There are 3,740 research employees employed at the hospital and over 2,200 Kentuckians. The Cincinnati Children’s Hospital and the Cancer/Blood Institute (CBDI) are two institutions working as one. CBDI has a $500 million budget, 900 employees, one of the nation’s top three pediatric cancer and marrow transplant centers, largest center for new anticancer drugs in children, and an international referral center for complex pediatric cancer. The hospital’s dual mission in cancer is to deliver outstanding cancer care to the community and develop transformative global leading research and new therapies for children and young adults with cancer. Genomic-targeted molecular pediatric cancer therapies are personalized to improve chances of a cure. Next generation targeted radiation therapies and new engineered immune cells for children to target leukemia, cancers, and infection are being developed. Large pharmaceutical companies are not developing drugs for children, but the hospital’s cancer program is using molecular modeling to design new targeted drugs for childhood cancers. Cincinnati Children’s Hospital, Kosair Children’s Hospital and Norton Healthcare have extraordinary and unique technologies, expertise, and opportunities for continued national leadership in childhood cancer. New opportunities include integrated research in the genomics mechanisms causing pediatric cancers, development of new targeted therapies, and an expanded collaborative network bringing research advances to the bedside of children in all three hospitals.
In response to a question by Representative Benvenuti, Dr. Perentesis stated that the challenge is getting federal government support and funding for pediatric cancers. Expanding regional collaboration would allow the best use of resources for care.
In response to a question by Representative Webber, Dr. Parentesis stated that research is being conducted to understand why pediatric cancer is increasing.
In response to a question by Senator Buford, Dr. Parentesis stated that there is a need to educate the public about childhood cancer and available treatments.
In response to a question by Senator Denton, Dr. Perentesis stated that because pharmaceutical companies are under pressure to make money, developing drugs for the treatment of pediatric cancer is not a high priority.
In response to a question by Representative Burch, Dr. Perentesis stated that if the federal government withdrew cancer funding it would be devastating. Much current research in the United States would collapse, and there is a need for more research to be conducted in the United States.
Dr. John A. D’Orazio, MD, PhD, University of Kentucky, stated that cancer is the leading cause of death by disease in childhood. Cancer is the most curable chronic disease in children. Less than 10 percent of cancer patients could be saved 50 years ago, now approximately 80 percent of all pediatric cancer patients are long-term survivors. One of every 1,000 individuals in the United States is a pediatric cancer survivor. In the United States, there are approximately 15,700 new patients under the age of 20 diagnosed every year. Every day 42 children are newly diagnosed with cancer and 40,000 children are treated for cancer each year. The average age of a cancer patient is six years old. Types and distribution of cancers are different than adult cancers. Treatment for pediatric cancer is more intensive, and often requires frequent inpatient stays. Fortunately, children tolerate this intensive treatment better than adults. In general, pediatric cancer is more curable. Treatment for childhood cancer involves a surgically-placed semi-permanent IV, chemotherapy, duration of therapy ranges from several weeks to several years, multiple hospitalizations, blood tests, blood transfusions, antibiotics, and certain high-risk patients require bone marrow transplantation.
Leukemia patients require up to 25 spinal taps. Pediatric cancer treatment requires a collaborative effort consisting of doctors, nurses, parents, specialists, and many more. It is estimated that less than one in ten patients have a clearly defined predisposing risk factor. The incidence rate for childhood cancer is slowly increasing. More research needs to be done regarding the case and possible prevention of childhood cancer. Over half of pediatric cancer patients participate in clinical trials compared with less than 5 percent of adults. The University of Kentucky participates nationally in the Children’s Oncology Group and regionally in the Advanced Clinical Trials Network. The university is initiating trials for teenagers and young adults with cancer in collaboration with University of Kentucky’s Markey Cancer Center. The Markey Cancer Center has achieved the NCI Comprehensive Cancer Center status.
Additional areas of research interest include the management of obesity, focus on the genetics of cancers that seem over-represented in our population, and UV safety and melanoma prevention. The mission of the university’s Pediatric Hematology and Oncology is to provide high quality medical care for the children of central and eastern Kentucky, and integrate with other centers for ultra-specialized treatments such as bone marrow transplants. Private organizations such as DanceBlue’s participation in funding raisers help with basic and clinical social workers, child life specialists, and school intervention specialists. Great advances have been made in pediatric oncology that will have a substantial long-term impact, but more research needs to be conducted regarding the cause and possible prevention of childhood cancer.
Dr. Ken Lucas, MD, Norton/Kosair/University of Louisville, stated that the mission of the University of Louisville’s Division of Pediatric Hematology/Oncology is to provide the highest quality of care for patients and families that are being treated for disorders within the realm of pediatric hematology/oncology close to home. The mission of Kosair Children’s Hospital is to provide quality health care to all those served, in a manner that responds to the needs of the communities and honors the hospital’s faith heritage. Collaboration between the University of Louisville’s Division of Pediatric Hematology/Oncology and Kosair Children’s Hospital provide a comprehensive approach in the care and treatment of the pediatric hematology/oncology patient and their families. Infrastructure of the delivery system consists of clinical division with a strong academic and research focus, and service line model. The Pediatric Stem Cell Transplant Program is a comprehensive program to treat children with blood disease or cancer in order to provide state of the art care in an environment designed for the pediatric patient. The program is accredited by the Foundation for the Accreditation of Cell Therapy (FACT). The few expansions of the program have doubled the number of clinical faculty, doubled the number of stem cell transplants, and expanded the criteria for potential stem cell transplant candidates. The goal is to insure the availability and access to the state of the art care in the treatment of pediatric cancers, which must be one of the essential health care services available to the children of the Commonwealth of Kentucky. The University of Louisville’s Division of Hematology/Oncology and Kosair Children’s Hospital will continue to strive to provide the highest quality of care for the patients and families.
In response to questions by Representative Westrom, Dr. D’Orazio stated that it is an achievement to earn the NCI Comprehensive Cancer Center status based on research. The recognition provides some federal funding and increases the competitive ability to hire staff. Dr. Lucas stated that a cancer patient should never smoke after cancer treatments.
In response to a question by Senator Givens, Dr. Lucas stated that the Children’s Oncology Group is a collaboration of cancer facilities. A child stays on the same protocol in all the hospitals. Dr. D’Orazio stated that cancer specialists are scattered between hospitals. There is a challenge to offer treatment as close to home as possible unless a specialist in another hospital can provide the needed treatment to prevent a hardship on the family. Dr. Perentesis stated that pediatric oncology as an area of medicine is not as competitive as adult oncology. There are 1,000 pediatric oncologists nationwide.
In response to a question by Representative Burch, Dr. Perentesis stated that he would recommend that a child get the HPV vaccine to help prevent cancer.
In response to a question by Representative Flood, Ms. Bloyd stated that $10 million would be a good place to begin to fund pediatric cancer in Kentucky.
Update on the Incidences of HIV/AIDS Cases in Kentucky
Kraig E. Humbaugh, MD, MPH, Senior Deputy Commissioner, Department for Public Health, Cabinet for Health and Family Services, stated that deaths among HIV disease cases have decreased since 1983. In Kentucky, approximately 6,000 individuals are living with HIV, and they are living longer because of improved medical therapies. Name based reporting was introduced in 2004. Approximately half of the HIV cases are in the Louisville Metro area. HIV disproportionately affects minorities and young adults. Kentucky statistics show that 38 percent of the new HIV cases were African American, 5 percent were Hispanic, and 53 percent were Caucasian. Kentuckians in their 20s, 30s, and 40s had higher percentages of diagnoses compared to their respective populations. In 2012, data show that less than 1 percent of Kentuckians younger than 13 were diagnosed with HIV. Fewer babies are born with HIV because the medications that can be taken by pregnant women have improved.
Kentucky HIV transmission categories include heterosexual females, men having sex with men who are intravenous drug users, other intravenous drug users, and men having sex with men without being intravenous drug users. Data from 2003 to 2012 show that 27 percent of the 3,339 Kentuckians diagnosed with HIV were also diagnosed with AIDS. Over 2,000 Kentuckians are unaware they have HIV because they have not been tested and diagnosed. As of January 1, 2013, the Department for Medicaid Services reimbursed for routine HIV screening of adults aged 15 to 65 regardless of risk in Kentucky. The Centers for Disease Control and Prevention (CDC) and the United States Preventive Services Task Force recommend that adolescents, adults, and pregnant women be screened for HIV, regardless of the risk. As of July 2013, Kentucky’s HIV testing laws were consistent with CDC’s 2006 HIV testing recommendations. CDC recommends that individuals between 13 and 64 years be tested for HIV.
As of July 2013, Kentucky did not require reporting of all CD4 and viral load results, including undetectable results, for surveillance purposes. CD4 and HIV viral load data are critical to the medical care and health of people living with HIV. With expanded rapid testing, there is an opportunity to help more Kentuckians know their HIV status and link to care earlier. The linkage-to-care successes are tracked by the HIV/AIDS Branch in the Department for Public Health. The Kentucky AIDS Drug Assistance Program (KADAP) and the Kentucky Health Insurance Continuation Program (KHICP) are managed by the Department for Public Health and are the payors of last resort for HIV-positive Kentuckians who meet the financial and residency eligibility criteria. With the implementation of Medicaid and qualified insurance plans available through kynect, more individuals are transitioning from KADAP to comprehensive health insurance that includes preventive treatments. Statistical reports can be located on the HIV/AIDS Branch web site at http://chfs.ky.gov/dph/epi/HIVAIDS/surveillance.com.
In response to questions by Senator Denton, Dr. Humbaugh stated that minorities and blacks have a higher percentage of HIV because of high risk factors such as men having sexing with men and intravenous drug use. The Kentucky Health Insurance Continuation Program (KHICP) is a payor of last resort for HIV-positive Kentuckians who meet the financial and residency eligibility criteria. The department receives $5 million from the federal government and rebates from drug companies for HIV/AIDS expenses.
In response to a question by Senator Givens, Dr. Humbaugh stated that the department does not have statistics that determine if blacks and non-Hispanics are being tested earlier for HIV.
In response to a question by representative Burch, Dr. Humbaugh stated that someone can go a long time and not know whether he or she has HIV.
There being no further business, the meeting was adjourned at 12:01 p.m.