# Sickle Cell Disease Comprehensive Care Act

This bill creates a five-year federal program to help states improve medical care for people with sickle cell disease through Medicaid. Sickle cell disease is a serious inherited blood disorder that causes severe pain, organ damage, and other serious health complications. The program recognizes that people with this disease often struggle to find good doctors and coordinated care, so it's designed to fix that problem.

Here's how it works in practice. First, the federal government will give $25 million in planning grants to at least 10 states to study their sickle cell patient populations and figure out what's missing in their care systems. States will assess how many sickle cell patients they have on Medicaid, whether they have enough specialists to treat them, and what barriers prevent patients from getting care—like transportation problems, provider shortages, or gaps in available treatments. After this 18-month planning phase, the government will select 5 to 10 states to actually implement comprehensive care improvements using an additional $50 million in federal funding.

The participating states will then create multi-disciplinary care teams of doctors and specialists who work together to treat sickle cell patients. These teams will coordinate all the services a patient needs—from blood transfusions and pain management to mental health care, dental work, and help getting to appointments. The federal government will cover 100 percent of the costs for these services during the demonstration period, which is significant because states normally have to pay a portion themselves. States can also pay care coordinators and community health workers to help patients navigate the system and manage their conditions. The bill specifically focuses on reaching young adults and pregnant women with sickle cell disease, groups that often face particular challenges.

For patients, this means better access to specialized care, more coordinated treatment, and reduced barriers to getting the services they need. For states, the hope is that better outpatient care will reduce expensive emergency room visits and hospital stays, ultimately lowering overall costs. The bill requires states to report back on whether they're actually reaching more patients, whether emergency visits and hospitalizations are decreasing, and whether the improvements can be sustained after the demonstration ends.

Sickle Cell Disease Comprehensive Care Act

Davis, Danny K.

Sickle Cell Disease Comprehensive Care Act This bill establishes and provides funds for a demonstration project for state Medicaid programs to improve outpatient care for individuals with sickle cell disease, with a focus on young adults and pregnant women. The Centers for Medicare &amp; Medicaid Services must award planning grants to at least 10 states and must select between 5 and 10 states to participate in the project. Participating states must provide specified services and support for individuals with sickle cell disease, including multidisciplinary care teams, appropriate treatments, mental health services, and specialist services. The bill provides a 100% Federal Medical Assistance Percentage (i.e., federal matching rate) for services provided through the project.