SICKLE CELL DISEASE, COMPREHENSIVE CARE S.B. 641:
SUMMARY OF INTRODUCED BILL
IN COMMITTEE
Senate Bill 641 (as introduced 9-15-21)
Committee: Health Policy and Human Services
CONTENT
The bill would amend the Social Welfare Act to do the following:
-- Require the Department of Health and Human Services (DHHS) to ensure the availability of accessible, quality health care for individuals with sickle cell disease who were enrolled in certain Medicaid managed care organizations (MCOs).
-- Require the DHHS to require, by the fiscal year (FY) 2022 contract year, comprehensive health care program Medicaid MCOs to implement a sickle cell disease quality strategy for children and adults with sickle cell disease.
-- Require the DHHS to provide an annual sickle cell disease management and accountability report to the Legislature, including the status of sickle cell disease-focused access to care, quality of services, health outcomes, and disparities in Michigan.
-- Require the DHHS to incorporate the sickle cell disease management and accountability standards into contracts, including financial or administrative penalties for lack of performance.
-- Require contracted plan rates to be adjusted to reflect enhanced care or other provisions that were shifted to the contracted plans.
The bill would require the DHHS to ensure the availability of accessible, quality health care for individuals with sickle cell disease who were enrolled in Medicaid MCOs that had a contract with the DHHS to provide services to Medicaid members in the comprehensive health care program.
By the FY 2022 contract year, the DHHS would have to require comprehensive health care program Medicaid MCOs to implement a sickle cell disease quality strategy for children and adults with sickle cell disease that included the following components:
-- Measurable goals to improve the identification of members with sickle cell disease within 90 days after enrolling in the contracted health plan.
-- Adequate provider network capacity to ensure timely access to sickle cell disease specialty service providers, including hematologists.
-- Care coordination strategies and supports to help members with sickle cell disease access sickle cell disease specialists and other related care supports.
-- Delivery of a DHHS-approved training curriculum to educate primary care providers on sickle cell disease, including information on emergency warning signs and complications, evidence-based practices and treatment guidelines, and when to make referrals to specialty sickle cell disease treatment providers.
The DHHS also would have to do the following:
-- By the FY 2022 contract year, require each comprehensive health care program Medicaid MCO to report, on a quarterly basis, an unduplicated count of children and adults identified as having sickle cell disease enrolled with the contracted plan during the quarter, and require the DHHS to publish these reports, by contracted plan, on its website.
-- By January 1, 2023, and in partnership with the comprehensive health care program Medicaid MCOs, identify, document, and share best practices regarding sickle cell disease care management and care coordination with Medicaid-enrolled primary care and sickle cell disease specialty providers with a goal of improving services for members with sickle cell disease and their families.
-- Leverage the DHHS Public Health Strategic Plan to Address Sickle Cell Disease Across the Lifespan 2015-2018 and the entities and its strategic planning participants, enter into a contract by January 1, 2022, with a publicly funded university to develop a sickle cell disease-focused comprehensive assessment tool or a supplement to an existing comprehensive assessment tool to screen members identified with sickle cell disease for comorbidities, medical history for the treatment of sickle cell disease including disease-modifying medications and pain management, psychosocial history, barriers to accessing or completing treatments, social supports, other care coordinators working with the member, community resources being used or needed, quality of life, and personal preferences for engagement with a care coordinator.
-- By the FY 2023 contract year, establish performance measures relative to access to care and available therapies, engagement in treatment, and outcomes for individuals with sickle cell disease, with the metrics to be reported annually by the comprehensive health care program Medicaid MCOs and with incentive payments attached to the measures.
-- By January 1, 2023, develop a plan for improving the transition from pediatric care to adult care for adolescents with sickle cell disease who are aging out of the Medicaid program, and a plan for helping qualified beneficiaries maintain Medicaid coverage under another eligibility category, in order to maintain continuity of care.
The DHHS would have to provide an annual sickle cell disease management and accountability report to the Senate and House of Representatives appropriations committees and the Senate and House Fiscal Agencies, including the status of sickle cell disease-focused access to care, quality of services, health outcomes, and disparities in Michigan.
The DHHS would have to incorporate the sickle cell disease management and accountability standards into the contracts, including financial or administrative penalties for lack of performance. Contracted plan rates would have to be adjusted to reflect enhanced care or other provisions that were shifted to the contracted plans.
BACKGROUND
Sickle cell disease is a group of inherited red blood cell disorders that affect hemoglobin, the protein in red blood cells that carries oxygen. Red blood cells with healthy hemoglobin are smooth, disk-shaped, and flexible; however, red blood cells with sickle cell hemoglobin become hard, sticky, and are C-shaped. Health red blood cells live up to 120 days, but red blood cells affected by sickle cell disease live only for 10 to 20 days.
Symptoms and complications of sick cell disease include anemia, pain, acute chest syndrome, splenic sequestration, stroke, jaundice, and priapism.
According to the Centers for Disease Control and Prevention, sickle cell disease affects approximately 100,000 Americans and is more prevalent in African American births. Sickle cell disease is a genetic condition that is present at birth, and it is inherited when a child receives two genes, one from each parent, that code for abnormal hemoglobin. Individuals who inherit one sickle cell gene and one normal gene have sickle cell trait (SCT). Those with SCT generally do not have any symptoms of sickle cell disease but can pass the trait on to their children. In the United States, babies are screened for sickle cell disease as part of the newborn screening program.
Generally, sickle cell disease is a lifelong illness. Currently, the only cure for some patients who have sickle cell disease is a blood and bone marrow transplant. Physicians may recommend medicines or transfusions to manage compilations, reduce symptoms, and prolong life.
Management of sickle cell disease is focused on preventing and treating pain episodes and other complications. Along with lifestyle behaviors such as hydration, avoiding places with high altitudes or low-oxygen exposure, and temperature maintenance, prevention strategies include medical screenings and interventions. Individuals living with sickle cell disease are directed to pay special attention to prevention of infections, vision loss, stroke, and severe anemia.
Legislative Analyst: Stephen P. Jackson
FISCAL IMPACT
The bill would have an indeterminate negative fiscal impact on the DHHS and no fiscal impact on local units of government. The DHHS would incur increased administrative costs resulting from the development and documentation of best practices for sickle cell disease care management for primary care and sickle cell disease specialty providers. Additionally, the DHHS would incur costs related to the development of a comprehensive assessment tool for individuals with sickle cell disease. Costs would depend on if the contract the DHHS entered into required the development of a new assessment tool or if it would require the modification of an existing assessment tool.
The treatment of sickle cell disease is covered by the State’s Medicaid and Healthy Michigan Program, as well as through the Children’s Special Health Care Services (CSHCS) Program. The fiscal year 2021-22 enacted budget included $6.6 million to expand CSHCS medical care and treatment to the approximately 400 adults in Michigan diagnosed with sickle cell disease who are not covered by Medicaid or other health insurance coverage.
Fiscal Analyst: Ellyn Ackerman
This analysis was prepared by nonpartisan Senate staff for use by the Senate in its deliberations and does not constitute an official statement of legislative intent.