Illinois General Assembly - Full Text of HR0640
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Full Text of HR0640  102nd General Assembly




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2    WHEREAS, Sickle cell disease (SCD) is a severe,
3life-shortening inherited disease that affects the red blood
4cells and impacts predominantly people of color, particularly
5African Americans; and
6    WHEREAS, Sickle cell disease is a disease in which a
7person's body produces abnormally shaped red blood cells that
8resemble a crescent or sickle and that do not last as long as
9normal round red blood cells, which leads to anemia; the
10sickle cells also get stuck in blood vessels and block blood
11flow, resulting in vaso-occlusive crises, which can cause pain
12and organ damage; and
13    WHEREAS, Individuals living with sickle cell disease
14experience severe pain, anemia, organ failure, stroke, and
15infection; in one recent study, more than 30% of those
16diagnosed experienced premature death, and another recent
17study estimates that the life expectancy for individuals with
18sickle cell disease is 54 years; and
19    WHEREAS, The Centers for Disease Control and Prevention
20estimates that sickle cell disease affects more than 100,000
21people in the United States, however the exact number of
22people with sickle cell disease is unknown; there is a need for



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1comprehensive and coordinated data collection efforts to
2better understand and quantify the scope and impact of sickle
3cell disease on patients, communities, states, and the nation;
5    WHEREAS, According to the Centers for Medicare and
6Medicaid Services, more than 40% of sickle cell disease
7patients are covered by Medicaid; and
8    WHEREAS, In the more than 100 years since the underlying
9cause of sickle cell disease was discovered, the sickle cell
10patient community has received relatively little attention and
11few resources, and these individuals have suffered due to
12racial discrimination in the health care system, in addition
13to the life-threatening disease burden; and
14    WHEREAS, Individuals living with sickle cell disease
15encounter barriers to obtaining quality care and improving
16their quality of life; these barriers include limitations in
17geographic access to comprehensive care, the varied use of
18effective treatments, the discrimination of being labeled
19"drug seekers" when seeking care during a crisis, the high
20reliance on emergency care, and the limited number of health
21care providers with knowledge and experience to manage and
22treat sickle cell disease; and



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1    WHEREAS, After decades of relatively little progress being
2made in therapeutic innovations for sickle cell disease,
3several therapies for sickle cell disease have been approved
4in the last few years, providing patients and their physicians
5with new therapeutic options to manage and treat their
6condition; and
7    WHEREAS, With several rapidly progressing one-time genetic
8therapies in clinical development, we are now on the verge of a
9potential cure for some patients living with sickle cell
10disease; these investigational approaches are still being
11evaluated in clinical trials, and such therapies have the
12potential to revolutionize the practice of medicine and
13transform the lives of individuals living with sickle cell
14disease; and
15    WHEREAS, Scientific and medical research advances need to
16be coupled with health care delivery and payment policies to
17ensure universal access to innovative pipeline products,
18particularly for Medicaid beneficiaries; and
19    WHEREAS, At present, gaps of care exist within sickle cell
20disease; these gaps are most glaring within the Medicaid
21system and exist for Medicare beneficiaries and patients
22enrolled in private coverage as well; and



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1    WHEREAS, There is a need for states to provide open access
2to therapies that treat SCD, particularly innovative therapies
3that have been approved in recent years to treat the
4underlying cause of the disease; and
5    WHEREAS, SCD treatments have improved over the years, and
6new ones are emerging from drug company pipelines; however,
7patients still face serious complications, high rates of
8hospitalization, and early death compared to the general
9population; patients are experiencing sub-optimal access due
10to Medicaid health plans imposing prior authorization and step
11therapy requirements; and
12    WHEREAS, There is a need to advocate for the ability to
13improve the quality of health, life, and services for
14individuals, families, and communities affected by sickle cell
15disease and related conditions, while promoting the search for
16a cure for all people in the world with sickle cell disease;
18    WHEREAS, To effectively prevent or treat hemoglobin
19disorders, efforts would require the strengthening of existing
20medical and genetic services in low-and middle-income
21communities; and
22    WHEREAS, Efforts should focus on the identification and



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1the promotion of affordable interventions, including but not
2limited to community education, training of health
3professionals, and newborn screening for early diagnosis
4sickle cell disease; and
5    WHEREAS, Involving other potential stakeholders, such as
6patients' and parents' organizations and other national and
7international health-related agencies, would significantly
8contribute towards efforts relating to advocacy, technology
9transfer, and capacity building; and
10    WHEREAS, The transition from pediatric to adult healthcare
11is a critical time for SCD patients, and mortality rates and
12total treatment costs significantly increase during the young
13adult years; therefore, be it
16we urge State and federal policymakers to ensure that
17individuals with sickle cell disease have access to all
18medications and forms of treatment for sickle cell disease and
19to services for enrollees with a diagnosis of sickle cell
20disease that are eligible for coverage under Medicare and
21Medicaid programs and to work to include new and effective
22treatments; and be it further



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1    RESOLVED, That State Medicaid programs are urged to
2conduct an annual review to determine if the available covered
3medications, treatments, and services are adequate to meet the
4needs of enrollees with a diagnosis of sickle cell disease and
5whether Medicaid should seek to add additional medications,
6treatments, or services; and be it further
7    RESOLVED, That when conducting the annual review, the
8State Medicaid program and/or the appropriate State agency
9should solicit and consider input from the general public,
10with specific emphasis on attempting to receive input from
11persons or groups with knowledge and experience in the area of
12sickle cell disease treatment, including but not limited to
13patients, caregivers, patient advocacy organizations,
14hematologists/treating physicians, and other healthcare
15professionals; and be it further
16    RESOLVED, That when conducting the annual review, the
17State Medicaid program and/or the appropriate State agency
18should identify opportunities where disease education, sickle
19cell disease services, access to care, access to information,
20and resources for sickle cell disease patients can all be
21improved; and be it further
22    RESOLVED, That State Medicaid programs are urged to
23proactively explore innovative reimbursement, coverage, and



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1access approaches that may facilitate equitable and
2appropriate access to potential curative one-time therapies
3for eligible patients, which may include separate payments
4from inpatient bundling, outcomes-based arrangements, and
5other innovative approaches; and be it further
6    RESOLVED, That State Medicaid programs and other State
7officials are urged to convene a multi-stakeholder dialogue,
8including patients, caregivers, physicians, and hospital
9administrators, to inform and begin working toward policies
10that will support equitable and appropriate access to
11innovative sickle cell disease therapies; and be it further
12    RESOLVED, That the State and federal government are urged
13to explore enhanced and expanded data collection efforts to
14determine how many people live with sickle cell disease in our
15State and in the United States, how sickle cell disease
16affects their health, and how researchers can improve medical
17treatments to extend and improve the lives of people with
18sickle cell disease, as well as to better inform policies that
19impact the sickle cell disease patient community; and be it
21    RESOLVED, That State and federal policymakers are urged to
22examine and address, when possible, the regulatory barriers
23that have and may continue to impede patient access to novel



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1therapies, including one-time, potentially curative therapies;
2and be it further
3    RESOLVED, That State Medicaid programs are urged to ensure
4that sickle cell patients in State Medicaid programs have
5access to potentially curative therapies when those treatments
6are proven and federally approved; and be it further
7    RESOLVED, That State and federal policymakers are urged to
8take all necessary actions to identify and remove other
9impediments to patients and their families, such as logistical
10and financial challenges, including missing work, childcare,
11and other issues, that may prevent or otherwise impede all
12patients, including sickle cell patients, from accessing
13potentially curative therapies; and be it further
14    RESOLVED, That suitable copies of this resolution be
15delivered to the Governor Pritzker, Lt. Governor Stratton,
16Governor Pritzker's Office of Equity, the Illinois Department
17of Human Services, and the Illinois Department of Public