Sickle cell disease (SCD) is the most common, inherited red blood cell disorder in the United States – affecting 70,000 to 100,000 Americans. Although new approaches in managing SCD have improved diagnosis and supportive care over the past decades, most patients still suffer severe complications from the disorder, and many encounter barriers to accessing high-quality care.
On April 20, the Tennessee legislature passed Tennessee Senate Bill 1074, which authorizes TennCare, (Tennessee’s Medicaid program) to provide medical assistance for SCD management services and for public education campaign activities related to the disease. The bill was passed through a successful grassroots advocacy movement spearheaded by hematologists and advocates at Vanderbilt University in Nashville. With the passage of this bill, Tennessee becomes compliant with the Sickle Cell Treatment Act (SCTA) of 2003 (see SIDEBAR) and is eligible to receive federal 50-50 funding match for non-medical expenses related to SCD, such as genetic counseling, community outreach, and education. The actions mandated in the bill will take effect January 1, 2016.
ASH Clinical News recently spoke with Michael R. DeBaun, MD, MPH, director of the Vanderbilt-Meharry Center for Excellence in Sickle Cell Disease in Nashville, Tennessee, about his role in getting this important legislation passed and how other hematology specialists can become more involved in legislative advocacy in their states.
How did you first get involved in advocating for patients with SCD?
About 18 years ago, when I was at St. Louis Children’s Hospital, I met a state senator in Missouri and was introduced to the power of advocacy in the state capital. In Missouri, I successfully lobbied for families of patients with SCD and made additional resources available to them to improve their care.
Tennessee Senate Bill 1074 authorizes TennCare, Tennessee’s Medicaid program, to provide medical assistance for SCD management services and public education campaign activities related to the disease. Can you discuss how TennCare managed patients with SCD prior to the passage of this legislation, and what this new bill will do to improve patient care?
Previously, patients with SCD had coverage under Medicaid, but the concept of education about the genetics of sickle cell trait – whether individuals had sickle cell trait and the implications for possibly passing the sickle cell trait gene onto future children – was never included. With the passage of Bill 1074, managed-care organizations under Medicaid can be held more accountable for education about the genetics of sickle cell trait and treatment and management of the disease, particularly potential complications associated with a stroke.
Prior to the passage of this legislation, there was really no accountability or emphasis on educating the community about SCD and its prevention. This legislation has some “teeth” – mandating that Medicaid-based, managed-care organizations be much more proactive about educating the community about SCD and sickle cell trait.
Tennessee’s Medicaid program is run through managed-care organizations. How will this bill affect treatment of sickle cell through these organizations?
We hope that with this new legislation there will be an emphasis on defining the roles of Medicaid-based, managed-care organizations in improving the health of individuals with SCD – both through education about sickle cell trait and with systematic sickle cell trait screening and genetic counseling. We have high expectations that holding Medicaid-based, managed-care organizations accountable to the law will improve the lives of sickle cell patients and their families.
Grassroots lobbying was key in the effort to get this legislation passed. Can you discuss some of the efforts you were involved in?
We worked with the community-based organization The Sickle Cell Foundation of Tennessee to raise awareness about this bill. That included identifying families who were affected by SCD across the state – from small municipalities and rural areas, to larger cities like Chattanooga, Nashville, and Memphis. Those families were invited to Nashville for two days so that we could learn more about their needs and their experiences in the health system.
The first portion of the meeting included a variety of activities to understand their views about patient-centered metrics, such as the importance of being re-admitted within 30-days, having to take days off from work or school due to illness, and outpatient medical care services.
The second portion of the meeting was devoted to teaching the power of lobbying. We had a lobbyist educate families about what lobbying meant and received feedback from our families about what some of their anticipated anxieties and concerns were. An important part of this activity was role-play; about six of the 20 families in attendance had to act out how they would approach their state representative or state senator to discuss the SCD legislation. We then provided additional support and suggestions about strategies to communicate the main message of the bill that was being voted on.
Next, we went through the routine for the visits to the state capitol and reviewed the expectations for the day. At the state capitol, we set up a common meeting place; there, we had a billboard with information about SCD and the bill, and we also had sickle cell-shaped cookies made with the name of the bill on them. We knew that the families were only going to have a brief amount of time with their state representative or senator, so we had these types of efforts in place to get the most out of that time.
Based on your success with this legislation, do you think similar programs could work in other states?
Yes, I think this process can be replicated in other states. However, it’s not an easy task. The grassroots approach requires quite a bit of planning, and it is not an easy undertaking. For us, this was an 18-month process.
To start, we reached out to a person who was familiar with elected state representatives and who subsequently identified a key leader in the House who would be influential in getting this bill passed. We then met with that representative and discussed a strategy to introduce the bill. I was also fortunate enough to have the help of Brianna Hawkins, BA, a young, energetic Vanderbilt University pre-med graduate student. She did all of the difficult and necessary preparatory work, from reaching out to the families to distributing talking points for when those families spoke with state legislators, to organizing the two-day activity. Our families, health-care providers, and staff from the various medical communities (Vanderbilt, St. Jude Children’s Research Hospital, University of Tennessee, and Erlanger Children’s Hospital) throughout the state were unfamiliar with the lobbying process and had to be educated about key talking points when meeting with the legislators – as the liaison for these different parties, Ms. Hawkins was critical to the success of our efforts.
Another key to the success of our grassroots approach was the Sickle Cell Treatment Act, which was signed into law by President George W. Bush as part of the American Jobs Creation Act of 2004. The law provided a template for the state legislator, Rep. Harold J. Love Jr., of Tennessee, to follow when constructing the bill.
How would you encourage other physicians concerned about patients with sickle cell to get involved?
I now have lobbied for SCD in two states. My experience has been that legislators want to do what is right, but they may not fully understand what the issues are and how to address those issues in a way that is beneficial to citizens of the state. I am optimistic that the grassroots strategy can be replicated and improved upon in other states with the right combination of parties and tactics: an informed hematologist who brings credibility to issues; an informed and active patient advocacy group; targeted lobbying strategies, which often requires a professional lobbyist; and then, last but not least, the right legislator who has the influence to persuade his or her colleagues that this is the right thing to do and the right time to improve care for individuals with SCD.
Sickle Cell Treatment Act of 2003
The Sickle Cell Treatment Act of 2003 was signed into law by President George W. Bush. The act amended title XIX (Medicaid) of the Social Security Act (SSA) to include “primary and secondary preventative medical strategies, treatment, and services, including genetic counseling and testing, for individuals who have sickle cell disease as medical assistance under the Medicaid program.”
The legislation included four main components:
- Providing additional funding for eligible Medicaid recipients for primary and secondary preventive physician and laboratory services related to sickle cell disease that were not previously covered by Medicaid
- Allowing states discretion in approving receipt of 50-50 funding match for non-medical expenses – such as genetic counseling, community outreach, education, and other services – related to sickle cell disease treatment
- Creating 40 SCD treatment centers at Federally Qualified Health Centers through an annual $10 million competitive grant program for five years
- Establishing a National Coordinating and Evaluation Center operated by the U.S. Department of Health and Human Services to coordinate and oversee SCD funding and research – including the collection, monitoring, and distribution of information on best practices related to managing SCD among individuals older than 5 years
Dr. DeBaun was the physician co-author of the bill introduced by Senator James Talent of Missouri, who was the recipient of the ASH Public Service Award in 2004.