State Action Plans
In the 2017-2021 Project Period, HRSA required regions to develop a Regional Sickle Cell Action Plan and state-specific Sickle Cell Action Plans that:
- identify resources in each region and state to improve sickle cell care for all individuals with sickle cell in the region, and
- describe the overall infrastructure that will address the goals of the Sickle Cell Treatment Demonstration Regional Collaborative Program.
The state action plans describe:
- how states will develop a network of providers using evidence-based sickle cell care in the state;
- how telemedicine/telehealth and provider support strategies will be used;
- how access to quality care (with an emphasis on family engagement, adolescent transition to adult life, and care in a medical home) will be supported; and
- how to increase the number of individuals with sickle cell disease being treated by providers using evidence-based sickle cell care.
The six PSCRC States that received core funding (AZ, CA, CO, NV, OR, and WA) developed a Sickle Cell State Action Plan for their respective geographic area.
Click on the icons of the states to read their action plans.
For questions regarding the initiative as a whole, please contact Shalini Vora, MPH at svora@c3dibd.org. For questions about a specific state’s action plan, please contact the individual specified below.
To view more information, click on the State image below.
Arizona State Action Plan
The Arizona Sickle Cell State Action Plan was developed by Dr. Sanjay Shah (Hematologist-Oncologist, Phoenix Children’s Hospital) and Juhi Jain(Assistant Professor and Pediatric Hematologist-Oncologist, University of Arizona), in collaboration with the community based organization, The Sickle Cell Foundation of Arizona.
The needs of Arizona’s sickle cell population include:
- improved care for our adults and young adults with sickle cell anemia (SCA),
- better transition plans for our patients with sickle cell anemia,
- better awareness of this disease in the community so more patients seek health care for this disorder,
- improved outreach for bone marrow donors in this population,
- better care for refugees and immigrants with sickle cell anemia, transition of care, and adult care for individuals with sickle cell anemia.
Through the development of the clinical-CBO partnership, Arizona held their first Sickle cell conference in Phoenix AZ on Sept 14, 2019 for patients and families with SCA (about 100 attendees). Providing education in school districts about sickle cell anemia. Improving quality of care through QI initiatives.
For more information, please contact either of the following individuals:
- Sanjay Shah, MD at sshah2@phoenixchildrens.com
- Juhi Jain, MD at juhi.jain@bannerhealth.com
California State Action Plan
Individuals with sickle cell disease, family members, experts, community-based organizations, advocates, and other partners met in Sacramento, CA in early 2018 to begin the detailed process of creating the California Sickle Cell State Action Plan. We identified public health priorities and key implementation agencies needed to improve the health of Californians affected by sickle cell disease and sickle cell trait. We envision the Action Plan to be a roadmap that will transform healthcare delivery, access to and cost effectiveness of care for Californians with sickle cell.
Our Mission is to build an effective statewide coalition of clinicians, community, and stakeholders to educate, equip, and empower Californians about Sickle Cell Disease, Sickle Cell Trait, and other blood disorders.
Our vision statement is Sickle Cell Equity California: #SaveSickleCellLives
Our goal is for providers, agencies and the community to collaboratively implement the plan, which will articulate needed steps to ensure that individuals with sickle cell disease receive comprehensive, patient-centered, coordinated, accessible, safe and high-quality care, no matter where they live or seek care in California.
Click to Download an overview of the California Sickle Cell State Action Planning Initiative
Click to Download the CA Sickle Cell State Action Plan Executive Summary
Advocacy Timeline
Feb. 2019
On February 21, 2019, California Assembly member Mike Gipson (D – 64th District, South Los Angeles) introduced a bill into the California legislature that would strengthen Sickle Cell Services in California. The bill directs the California legislature to make $15 million available to create a variety of new services for Californians with sickle cell disease (SCD) over the next three years. The new SCD adult center services will link outpatient care to inpatient care, and provide coordinated, comprehensive, team-based medical, behavioral health, mental health, social support, and surveillance to adults with sickle cell disease. They will provide expanded access to new therapeutic agents and care. The bill highlights the needs of Californians with Sickle Cell that are outlined in the California Sickle Cell Action Plan.
May 2019
The Center for Inherited Blood Disorders (CIBD) and the Sickle Cell Disease Foundation (SCDF) have had the opportunity to engage in efforts to educate legislators and advocate for the passing of AB1105. On May 6, 2019, Dr. Diane Nugent (CIBD) and Lance Jones (SCDF) testified regarding the current state of sickle cell disease in California, the goals of AB1105, and the health disparities the bill will address.
View Dr. Nugent and Lance’s testimony here.
On May 8th, patients, healthcare providers, and advocates presented at “The Impacts of Sickle Cell Disease in California Legislative Briefing” sponsored by the California Legislative Black Caucus and the California Biotechnology Foundation to educate stakeholders about gaps in care, and listen to the patient experience. Click here to access the agenda and see a complete list of presenters.
July 2019
Sickle Cell Disease (SCD) services in California will be expanded over the next three years supported by a $15 million initiative that Governor Newsom included as part of the state budget.
The initiative, which addresses priorities in California’s 2018 Sickle Cell Disease State Action Plan, will:
- establish a network of sickle cell disease centers in counties where the largest numbers of adults with SCD live to provide access to specialty care and improve quality of care for adults with sickle cell disease;
- support workforce expansion, among both clinicians and community health workers, to enhance care coordination;
- expand surveillance to monitor disease prevalence, healthcare utilization, complications and costs; and
- conduct outreach and awareness on SCD.
Colorado State Action Plan
The Colorado Sickle Cell Treatment and Research Center (the Sickle Cell Center) is in the School of Medicine at the University of Colorado Anschutz Medical Campus. It also holds the state contract for the newborn screening hemoglobinopathies follow-up program. The vast majority of individuals with SCD receive specialty pediatric care at the Colorado Children’s Hospital and/or the satellite facilities in Colorado Springs; and receive adult specialty care at the University of Colorado Hospital or its affiliates.
The Sickle Cell Center has developed a Colorado Sickle Cell State Action Plan, based on ongoing input from various stakeholders as well as feedback from an annual “Sickle Cell Summit”. The Sickle Cell Center has identified the following priority areas:
- Work with sites of specialty and primary healthcare to ensure that high-quality, evidence- and guideline-based services are offered to all persons in CO living with SCD across the lifespan;
- Improve awareness of the resources available in CO to individuals with SCD and their families to manage the impact of the disease across the lifespan.
The Sickle Cell Center aims to achieve these priorities through the following strategies:
- Maintain a central database of sites of care and resources; a listserv of providers; sustain communication with these sites and providers;
- Maintain a centralized resource on the Sickle Cell Center’s website containing contemporary guidelines, clinical decision support tools; and disseminate information about educational opportunities, targeting CO providers on the management of SCD;
- Increase awareness of the complexities of SCD management and the need for individuals and their families to have access to sites of care with appropriate expertise;
- Disseminate information via the website and provider listserv about services and support offered by the Colorado sickle cell community-based organizations and other organizations.
For more information, please visit our website www.coloradosicklecell.org or contact Theresa Martinez, Center Administrator at theresa.martinez@cuanschutz.edu.
Nevada State Action Plan
The Nevada Sickle Cell Action Plan was the vision of the physicians and patient advocates. Three community based organizations (CBOs) were instrumental in this effort: DreamSickle Kids Foundation, Bridging The Gap-Adult Sickle Cell Foundation of Nevada and Sickled Not Broken Foundation (Linetta Barnes, the founder is now an independent consultant and nurse educator). The priority areas for Nevada’s state action plan were identified through focus groups conducted with patients and healthcare providers.
Priority areas include: lack of access to excellent care; lack of education for the patients, community members, and healthcare providers; and a lack of social support for patients and families caring for sickle cell disease (SCD).
Efforts to address these priority areas will focus on the following activities:
- Increase Education and Awareness
- Assure Timely and Complete Transition to Adult Care
- Advocacy and Training
- Prioritize Sickle Cell in the state of Nevada
The physician and CBO partnership has resulted in increasing awareness and advocacy. On June 3, 2019, Governor Sisolak approved the first Sickle Cell Bill in Nevada, AB 254. SCAN (Sickle Cell Alliance of Nevada) was established to recognise the collaboration of the various CBOs providing services and education through many community based events, such as the Annual Sickle Cell Walk, educational talks and support groups, and an annual Sickle Cell Symposium. Outreach programs are ongoing to identify patients with sickle cell disease that do not have a medical home or a hematologist and ensure that they are receiving excellent sickle cell care, identify any unmet needs and provide services to address these unmet needs. A partnership was created with the Nevada Newborn Screening Program in identifying newborns with SCD, sickle cell trait and other hemoglobinopathies and providing education and genetic counseling.
We continue to provide a strong voice within the Rare Disease Advisory Council working with Nevada Health and Human Services, Division of Public and Behavioral Health in advocating for patients with SCD.
For more information, contact:
- Dr. Nik F. Abdul Rashid at nik.rashid@htcnv.org
- Linetta Barnes at linetta.barnes@htcnv.org
- DreamSickle Kids Foundation: https://dreamsicklekids.org/
- Bridging the Gap, Adult Sickle Cell Foundation: https://ascdfofnv.org/
Oregon State Action Plan
The catalyst for Oregon’s initial state action plan was during the Pacific Sickle Cell Regional Collaborative (PSCRC) 2018 site visit, where providers (hematologists, hospitalists, social workers, etc.) met at Oregon Health and Science University (OHSU) in order to ask questions, describe their experience, and suggest what could help them care for patients with SCD seen at Oregon Health and Science University. Providers had concerns pertaining to integrative medicine, care coordination, housing, poverty, unconscious bias, and the current opioid climate.
Since then, we have worked hard to improve our program. Projects that came out of this initial meeting include campus-wide work toward recognizing and decreasing unconscious bias and creating tools so that ordering providers feel comfortable and supported when ordering sufficient pain medications for a patient with SCD.
As projects close and times change, Oregon’s priorities for 2025 are centered on 3 main aims:
- Connecting individuals affected by SCD to accessible and high-quality health care:
According to The Oregon All Payer All Claims Reporting Program, Oregon has approximately 300 individuals who fulfilled our definition of SCD. Yet, we know where only a fraction receives their healthcare. In collaboration with PSCRC, Oregon and Southwest Washington Association for Thalassemia and Sickle Cell (OSWATS), and Sickle Cell Anemia Foundation of Oregon, we strive to identify more community members living with SCD and partnering with them to find a high-quality, patient-centered hematology care and primary care medical homes. Under this goal, we will also continue our work in pediatric-to-adult transition to ensure that our adolescents and young adults living with SCD remain logistically and emotionally connected to primary care and hematology medical care during this important developmental stage.
As the PSCRC state lead, OHSU will work with these hematology and primary providers, clinics, and health systems to ensure evidence-based and compassionate care for individuals affected by sickle cell disease and sickle cell trait. This could include providing CME , review of institutional guidelines, real-time consultation of complex patient.
- Building community:
With two community-based organizations in Oregon and Southwest Washington, we look forward to meeting and sincerely knowing our community outside of the healthcare setting, while also giving them a means and space to get to know each other without any healthcare provider around. Together, we hope to recognize and advocate for our community on a larger scale to the public, insurers, and state and regional policy makers.
3. “Big data”:
Although there are substantial limitations in “big data”, it can also be very useful to see trends and identify strengths and weaknesses in a system, especially in a state with a relatively small population spread out over a large geographical area. Using The Oregon All Payer All Claims Reporting Program and Globin Regional Data and Discovery (GRNDaD) databases, we wish to ask questions about SCD that could not be answered with smaller datasets. Similar databases for other disorders, such as hemophilia and cystic fibrosis, have directly led to significant advancement in care and treatment.
If you have any questions or concerns, please contact Dr. Trisha Wong at (503) 418-5150 or email sicklecellresearch@ohsu.edu.
Utah State Action Plan
The Utah Sickle Cell State Action Plan was developed by Dr. Sashi Goteti, Pediatric Hematologist at The University of Utah/Primary Children’s Hospital, in collaboration with the hematology team at Primary Children’s including Elizabeth Vessey, NP, Heidi Lane, PT, and Lindsey Bellomy, RN. All pediatric patients with sickle cell disease receive care at Primary Children’s Hospital or its affiliates across the state of Utah.
To continue excellent clinical care and ongoing improvements, the Sickle Cell Team identify the following areas to prioritize:
- Safe transition from pediatric to adult care:
- Provide transition readiness assessments at comprehensive annual visits to evaluate patient and family’s familiarity with sickle cell disease.
- Identify gaps in readiness and provide resources to set patients up for success
- Build a network of adult care providers based on patient insurance coverage and engage in successful transition.
Equitable Care
- Identify patients who have higher needs to ensure they have resources to access care.
- Provider education and workforce development.
- Provide education related to sickle cell disease to community providers.
- Work closely with the state newborn screen program to develop education materials and advise on screening and follow-up.
For more information, please contact Sashi Goteti, MD at sashi.goteti@hsc.utah.edu.
Washington State Action Plan
An initial historical overview of the state of sickle cell disease in Washington State was initially derived from a combination of database review, the Seattle Metropolitan Sickle Cell Task Force (MSSCTF), discussions with a limited number of patient families, medical team members and population surveys. This plan has evolved with the onset of the pandemic, and more recently, with significant growth of the Odessa Brown / Seattle Children’s sickle cell program, and leadership changes.
While medically Washington State is unique in virtually every pediatric patient being followed by a hematologist. In contrast, while there is a single adult sickle cell program, it is not clear what, if any, expert care the majority of adults in the state receive.
Several key areas of focus were identified including:
- having a limited number of adult and pediatric programs with sickle cell expertise localized geographically to a tightly defined area combined with a relatively small sickle cell population which is increasingly spread out;
- the increasing geographic “redistribution” of patients away from these limited areas of expertise due to gentrification, economics, and transportation barriers impacting community support as well as medical care;
- families facing increasing socioeconomic barriers, thus it is harder to focus on chronic disease when struggling to obtain basic needs;
- no organized support for transition;
- limited access to pain specialists in a State with strict opiate guidelines;
- limited number of community-based sickle cell organizations;
- limited newborn screening follow up resources resulting in very few newborns diagnosed with sickle cell trait having documentation of receiving genetic counseling.
Previously, a four-question survey was distributed to a broad range of stakeholders in the state. Respondents were asked to share areas they felt were important to address, as well as areas they were willing to work on. There was a response rate of 12% that represented a broad base of types of stakeholders.
Themes extracted from the surveys regarding areas to focus on included:
- clinical management options of pain,
- improved access and quality of pain management,
- exercise and OT/PT,
- barriers to care and adherence,
- management of chronic illness,
- support for caregivers,
- promoting equity, education and awareness of sickle cell trait and disease in providers, families and community.
Independent of this, in meetings with the Seattle Metropolitan Sickle Cell Task Force improving transition and education of both families and medical teams were identified as goals.
Addressing the geographic, transportation and time barriers with telemedicine. Telemedicine appointments are offered and re so popular at times they need to be limited as patients have not been seen in person.
- Though not initially identified as a goal a meeting of community members, pediatric and adult providers identified transition as a priority, and the MSSCTF is having regular sessions, some of which are in conjunction with medical providers. We are working on setting up regular meetings between the Task Force, OBCC and the University of Washington Adult sickle cell program so as not to lose momentum.The Task Force and OBCC have come up with a tentative schedule for community education events for the next year. The OBCC team continues to offer education events to any group that is interested.
- The OBCC program has experienced dramatically increased support and staffing, but is also going through multiple leadership changes. While there has been increased interaction and collaboration with community, their priorities for program growth and improvement in community work, as well as clinic and hospital-based care remain to be determined.