Sickle Cell Disease Care Targeted in State, Federal Efforts
By Hannah Wisterman

Physicians could see improvements in their ability to care for patients with sickle cell disease as moves by the state and the Centers for Medicare & Medicaid Services (CMS) aim to standardize and improve treatment for the disease and expand access to care. 

CMS’ Sickle Cell Disease Action Plan, announced in September, aims to expand coverage and access for patients with sickle cell disease (SCD); improve the quality and continuum of care; advance equity and engagement; and examine data and analytics.   

The effort comes as Texas, too, bolstered its response to SCD with the passage of House Bill 1488 by Rep. Toni Rose (D-Dallas).  The bill directs the Texas Health and Human Services Commission, to the extent possible, and the Sickle Cell Task Force to: 

  • Help Medicaid managed care organizations promote greater awareness and use of national SCD clinical practice guidelines and protocols;  
  • Strengthen SCD education for physicians, including emergency medicine physicians, by working collaboratively with state specialty societies; and  
  • Use data to identify opportunities for improved health outcomes. 

“Approximately half of people affected by SCD are enrolled in Medicaid and 11% are enrolled in Medicare – often as dually eligible enrollees in both Medicaid and Medicare – underscoring the burden of disease among people enrolled in CMS programs and the importance of CMS action,” states a CMS plan summary.  

That burden of disease takes many forms, says Kevin McKinney, MD, an endocrinologist who chairs the Texas Medical Association’s Council on Medical Education. Patients with SCD face outsized barriers to care, which in turn creates higher rates of emergency department (ED) visits and hospitalizations. 

SCD-related ED visits contributed to an estimated cost of $2.4 billion a year nationally, according to CMS. 

“Patients that have sickle cell disease particularly have ongoing disparities with regards to being able to, number one, access timely treatments and, number two, be handled properly when they are in a crisis,” said Dr. McKinney, noting that SCD is most common in Black and Latino populations. 

CMS is seeking to address those disparities with the multi-pronged plan, including by promoting whole-person care through multidisciplinary teams and adding new payment codes for chronic pain management and treatment.  

Texas, among other states, has tightened restrictions on pain medication in recent years, but Dr. McKinney says the struggles around quality pain care existed even earlier.  

“There is an ongoing challenge in that there is discrimination and stereotyping of who is able to access pain medicines,” he said. “People of certain ethnicities don't have pharmacies in their neighborhoods, and, if they are able to access the medications in a different neighborhood, they are frequently judged as being drug seeking. That's been an ongoing challenge for decades.”  

Access to health coverage in the first place is a hurdle for many, adds Titilope Fasipe, MD, co-director of the Sickle Cell Program at Texas Children’s Hospital in Houston and chair of the Texas Department of State Health Services’ Sickle Cell Task Force.  

In Texas, individuals with SCD do not have lifespan coverage through Medicaid, she says. Hence, children with SCD are often covered by Medicaid or Children’s Health Insurance Program plans. But at the transition into adulthood, many patients lose insurance coverage, making consistent access to regular care more difficult. Additionally, complications from SCD can make it difficult to enter the workforce and access health insurance.  

Once children age out of Medicaid or CHIP, few will continue to qualify for Medicaid, says Helen Kent Davis, TMA associate vice president of government affairs. Texas is one of 10 states that has not extended Medicaid coverage to working-age adults and parents. If not severe enough, patients with SCD often find themselves betwixt and between – not sick enough to qualify for disability-related Medicaid coverage, but too sick to work full-time, where they might obtain employer-based coverage. Marketplace coverage may be an option for lower-income people with SCD. 

“Some people who study transitions from pediatric to adult care in sickle cell disease, they equate it to falling off a cliff,” Dr. Fasipe said. “Where's the bridge to help you go from the pediatric to the adult side? It's a rocky one, if it exists at all.”  

CMS plans to assess the quality-of-care issues related to sickle cell treatment within the Medicare and Medicaid populations over a patient’s lifetime. This will entail listening sessions with key stakeholders and roundtables with patients, caregivers, and physicians.   

But one additional access-to-care barrier remains constant, Dr. McKinney says: insufficient Medicaid physician payments. 

“[With] any chronic condition, and sickle cell is no exception, patients want to have full-person care. … That means that we have to do a better job at making sure they have access,” he said. “A lot of these patients are on Medicaid, and so we need to make sure that Medicaid payment rates are kept up with.” 

Last Updated On

December 06, 2023

Originally Published On

December 06, 2023

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Hannah Wisterman


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Hannah Wisterman is an associate editor for Texas Medicine and Texas Medicine Today. She was born and raised in Houston and holds a journalism degree from Texas State University in San Marcos. She's spent most of her career in health journalism, especially in the areas of reproductive and public health. When she's not reporting, editing, or learning, you can find her exploring Austin or spending time with her partner, cat, and houseplants.

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