Full Text of HR0640 102nd General Assembly
HR0640 102ND GENERAL ASSEMBLY |
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| 1 | | HOUSE RESOLUTION
| 2 | | WHEREAS, Sickle cell disease (SCD) is a severe, | 3 | | life-shortening inherited disease that affects the red blood | 4 | | cells and impacts predominantly people of color, particularly | 5 | | African Americans; and
| 6 | | WHEREAS, Sickle cell disease is a disease in which a | 7 | | person's body produces abnormally shaped red blood cells that | 8 | | resemble a crescent or sickle and that do not last as long as | 9 | | normal round red blood cells, which leads to anemia; the | 10 | | sickle cells also get stuck in blood vessels and block blood | 11 | | flow, resulting in vaso-occlusive crises, which can cause pain | 12 | | and organ damage; and
| 13 | | WHEREAS, Individuals living with sickle cell disease | 14 | | experience severe pain, anemia, organ failure, stroke, and | 15 | | infection; in one recent study, more than 30% of those | 16 | | diagnosed experienced premature death, and another recent | 17 | | study estimates that the life expectancy for individuals with | 18 | | sickle cell disease is 54 years; and | 19 | | WHEREAS, The Centers for Disease Control and Prevention | 20 | | estimates that sickle cell disease affects more than 100,000 | 21 | | people in the United States, however the exact number of | 22 | | people with sickle cell disease is unknown; there is a need for |
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| 1 | | comprehensive and coordinated data collection efforts to | 2 | | better understand and quantify the scope and impact of sickle | 3 | | cell disease on patients, communities, states, and the nation; | 4 | | and | 5 | | WHEREAS, According to the Centers for Medicare and | 6 | | Medicaid Services, more than 40% of sickle cell disease | 7 | | patients are covered by Medicaid; and | 8 | | WHEREAS, In the more than 100 years since the underlying | 9 | | cause of sickle cell disease was discovered, the sickle cell | 10 | | patient community has received relatively little attention and | 11 | | few resources, and these individuals have suffered due to | 12 | | racial discrimination in the health care system, in addition | 13 | | to the life-threatening disease burden; and | 14 | | WHEREAS, Individuals living with sickle cell disease | 15 | | encounter barriers to obtaining quality care and improving | 16 | | their quality of life; these barriers include limitations in | 17 | | geographic access to comprehensive care, the varied use of | 18 | | effective treatments, the discrimination of being labeled | 19 | | "drug seekers" when seeking care during a crisis, the high | 20 | | reliance on emergency care, and the limited number of health | 21 | | care providers with knowledge and experience to manage and | 22 | | treat sickle cell disease; and |
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| 1 | | WHEREAS, After decades of relatively little progress being | 2 | | made in therapeutic innovations for sickle cell disease, | 3 | | several therapies for sickle cell disease have been approved | 4 | | in the last few years, providing patients and their physicians | 5 | | with new therapeutic options to manage and treat their | 6 | | condition; and | 7 | | WHEREAS, With several rapidly progressing one-time genetic | 8 | | therapies in clinical development, we are now on the verge of a | 9 | | potential cure for some patients living with sickle cell | 10 | | disease; these investigational approaches are still being | 11 | | evaluated in clinical trials, and such therapies have the | 12 | | potential to revolutionize the practice of medicine and | 13 | | transform the lives of individuals living with sickle cell | 14 | | disease; and | 15 | | WHEREAS, Scientific and medical research advances need to | 16 | | be coupled with health care delivery and payment policies to | 17 | | ensure universal access to innovative pipeline products, | 18 | | particularly for Medicaid beneficiaries; and | 19 | | WHEREAS, At present, gaps of care exist within sickle cell | 20 | | disease; these gaps are most glaring within the Medicaid | 21 | | system and exist for Medicare beneficiaries and patients | 22 | | enrolled in private coverage as well; and |
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| 1 | | WHEREAS, There is a need for states to provide open access | 2 | | to therapies that treat SCD, particularly innovative therapies | 3 | | that have been approved in recent years to treat the | 4 | | underlying cause of the disease; and | 5 | | WHEREAS, SCD treatments have improved over the years, and | 6 | | new ones are emerging from drug company pipelines; however, | 7 | | patients still face serious complications, high rates of | 8 | | hospitalization, and early death compared to the general | 9 | | population; patients are experiencing sub-optimal access due | 10 | | to Medicaid health plans imposing prior authorization and step | 11 | | therapy requirements; and | 12 | | WHEREAS, There is a need to advocate for the ability to | 13 | | improve the quality of health, life, and services for | 14 | | individuals, families, and communities affected by sickle cell | 15 | | disease and related conditions, while promoting the search for | 16 | | a cure for all people in the world with sickle cell disease; | 17 | | and | 18 | | WHEREAS, To effectively prevent or treat hemoglobin | 19 | | disorders, efforts would require the strengthening of existing | 20 | | medical and genetic services in low-and middle-income | 21 | | communities; and
| 22 | | WHEREAS, Efforts should focus on the identification and |
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| 1 | | the promotion of affordable interventions, including but not | 2 | | limited to community education, training of health | 3 | | professionals, and newborn screening for early diagnosis | 4 | | sickle cell disease; and
| 5 | | WHEREAS, Involving other potential stakeholders, such as | 6 | | patients' and parents' organizations and other national and | 7 | | international health-related agencies, would significantly | 8 | | contribute towards efforts relating to advocacy, technology | 9 | | transfer, and capacity building; and
| 10 | | WHEREAS, The transition from pediatric to adult healthcare | 11 | | is a critical time for SCD patients, and mortality rates and | 12 | | total treatment costs significantly increase during the young | 13 | | adult years; therefore, be it
| 14 | | RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE | 15 | | HUNDRED SECOND GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that | 16 | | we urge State and federal policymakers to ensure that | 17 | | individuals with sickle cell disease have access to all | 18 | | medications and forms of treatment for sickle cell disease and | 19 | | to services for enrollees with a diagnosis of sickle cell | 20 | | disease that are eligible for coverage under Medicare and | 21 | | Medicaid programs and to work to include new and effective | 22 | | treatments; and be it further |
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| 1 | | RESOLVED, That State Medicaid programs are urged to | 2 | | conduct an annual review to determine if the available covered | 3 | | medications, treatments, and services are adequate to meet the | 4 | | needs of enrollees with a diagnosis of sickle cell disease and | 5 | | whether Medicaid should seek to add additional medications, | 6 | | treatments, or services; and be it further | 7 | | RESOLVED, That when conducting the annual review, the | 8 | | State Medicaid program and/or the appropriate State agency | 9 | | should solicit and consider input from the general public, | 10 | | with specific emphasis on attempting to receive input from | 11 | | persons or groups with knowledge and experience in the area of | 12 | | sickle cell disease treatment, including but not limited to | 13 | | patients, caregivers, patient advocacy organizations, | 14 | | hematologists/treating physicians, and other healthcare | 15 | | professionals; and be it further | 16 | | RESOLVED, That when conducting the annual review, the | 17 | | State Medicaid program and/or the appropriate State agency | 18 | | should identify opportunities where disease education, sickle | 19 | | cell disease services, access to care, access to information, | 20 | | and resources for sickle cell disease patients can all be | 21 | | improved; and be it further | 22 | | RESOLVED, That State Medicaid programs are urged to | 23 | | proactively explore innovative reimbursement, coverage, and |
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| 1 | | access approaches that may facilitate equitable and | 2 | | appropriate access to potential curative one-time therapies | 3 | | for eligible patients, which may include separate payments | 4 | | from inpatient bundling, outcomes-based arrangements, and | 5 | | other innovative approaches; and be it further | 6 | | RESOLVED, That State Medicaid programs and other State | 7 | | officials are urged to convene a multi-stakeholder dialogue, | 8 | | including patients, caregivers, physicians, and hospital | 9 | | administrators, to inform and begin working toward policies | 10 | | that will support equitable and appropriate access to | 11 | | innovative sickle cell disease therapies; and be it further | 12 | | RESOLVED, That the State and federal government are urged | 13 | | to explore enhanced and expanded data collection efforts to | 14 | | determine how many people live with sickle cell disease in our | 15 | | State and in the United States, how sickle cell disease | 16 | | affects their health, and how researchers can improve medical | 17 | | treatments to extend and improve the lives of people with | 18 | | sickle cell disease, as well as to better inform policies that | 19 | | impact the sickle cell disease patient community; and be it | 20 | | further | 21 | | RESOLVED, That State and federal policymakers are urged to | 22 | | examine and address, when possible, the regulatory barriers | 23 | | that have and may continue to impede patient access to novel |
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| 1 | | therapies, including one-time, potentially curative therapies; | 2 | | and be it further | 3 | | RESOLVED, That State Medicaid programs are urged to ensure | 4 | | that sickle cell patients in State Medicaid programs have | 5 | | access to potentially curative therapies when those treatments | 6 | | are proven and federally approved; and be it further | 7 | | RESOLVED, That State and federal policymakers are urged to | 8 | | take all necessary actions to identify and remove other | 9 | | impediments to patients and their families, such as logistical | 10 | | and financial challenges, including missing work, childcare, | 11 | | and other issues, that may prevent or otherwise impede all | 12 | | patients, including sickle cell patients, from accessing | 13 | | potentially curative therapies; and be it further
| 14 | | RESOLVED, That suitable copies of this resolution be | 15 | | delivered to the Governor Pritzker, Lt. Governor Stratton, | 16 | | Governor Pritzker's Office of Equity, the Illinois Department | 17 | | of Human Services, and the Illinois Department of Public | 18 | | Health.
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