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

California State Action Plan

Colorado State Action Plan

Nevada State Action Plan

Oregon State Action Plan

Washington State Action Plan

Arizona State Action Plan

The Arizona Sickle Cell State Action Plan was developed by Dr. Sanjay Shah (Hematologist-Oncologist, Phoenix Children’s Hospital), Esteban Gomez (Hematologist-Oncologist, Phoenix Children’s Hospital) and Neha Bhasin (Assistant Professor 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.

Click here to read the entire bill.

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:

  1. 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;
  2. support workforce expansion, among both clinicians and community health workers, to enhance care coordination;
  3. expand surveillance to monitor disease prevalence, healthcare utilization, complications and costs; and
  4. 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 Cheri Burge, Center Administrator at cheri.burge@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, Sickled Not Broken Foundation, and the Adult Sickle Cell Foundation of Nevada. 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 education through many community based events, such as the Annual Sickle Cell Walk, educational talks, and an annual Sickle Cell Symposium.

Sickled Not Broken Foundation has worked closely with the Sickle Cell Disease Foundation’s SC Crew to create a curriculum for a Teen to Adult Transition Program in Nevada. CBOs and clinical partners work closely with the Nevada Newborn Screening Program in identifying newborns with SCD, sickle cell trait and other hemoglobinopathies. On June 3, 2019, Governor Sisolak approved the first Sickle Cell Bill in Nevada, AB 254.

For more information, contact:

Dr. Nik F Abdul Rashid at nik.rashid@htcnv.org

DreamSickle Kids Foundation; https://dreamsicklekids.org/

Oregon State Action Plan

The catalyst for Oregon’s 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 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 2021 are centered on 3 main aims:

1. Transition clinic:

Between Doernbecher and Randall Children’s Hospitals, we estimate there are 70 pediatric patients with SCD in our state. However, an informal poll of adult hematology clinics only identifies ~25 adult patients statewide. Therefore, ensuring our adolescents are armed with knowledge about their health and skills to navigate the world as an adult is of utmost importance. We also hope to make this transition as easy as possible by staggering when providers exit and enter a patient’s life so that someone is always familiar and trusted.

Based on the work we have (and are) doing, the OHSU SCD clinic was chosen to pilot a hospital-wide, department-sanctioned transition program. Mort Murry, DNP, was hired to build and manage our sickle cell transition program and is collaborating with other divisions to expand it hospital-wide. OHSU’s sickle cell program was awarded $14K to continue our work. This budget includes remunerating patients and families for their expertise and involvement in helping OHSU build a high-quality, evidence-based program

2. Building community:

With one CBO in town, a second one is still in its early years. With these two CBOs, we hope they can complement each other to provide a wide variety of support to our families living with or affected by SCD. Goals include helping OHSU build and maintain a strong pediatric, transition, adult clinics, locating adults living with SCD who have left medical care, and identifying and counseling community members born with sickle cell trait. We very much look forward to meeting and knowing our community outside of the hospital and clinic setting.

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. In collaboration with OHSU-Portland State University’s School of Public Health and Oregon’s All-Payer Claims Database, we will identify providers who care for patients with SCD, study factors that predict a successful or failed transition from pediatrics to adult care, etc. With this knowledge in hand, we can better target education and build resources for Oregon’s sickle cell community.

We are also applying to join the Globin Regional Data and Discovery (GRNDaD) database. As a member, it would allow us to consent our patients and, with their permission, enter their anonymous data into GRNDaD. As GRNDaD grows, the US will have a powerful tool in which to discover and solve problems and complications associated with SCD. Similar databases for other disorders, such as hemophilia, 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.

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, discussions with a limited number of patient families and medical team members and population surveys. Plans have been altered due to the COVID-19 Pandemic. While some directions are receiving less focus, there have been tremendous advances in Telemedicine and COVID-19 relate support.

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 receive.

Several key areas of focus were identified including:

  1. 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;
  2. 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 are;
  3. families facing increasing socioeconomic barriers, thus it is harder to focus on chronic disease when struggling to obtain basic needs;
  4. no organized support for transition;
  5. limited access to pain specialists in a State with strict opiate guidelines;
  6. limited number of community-based sickle cell organizations;
  7. limited newborn screening follow up resources resulting in very few newborns diagnosed with sickle cell trait having documentation of receiving genetic counseling.

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:

  1. clinical management options of pain,
  2. improved access and quality of pain management,
  3. exercise and OT/PT,
  4. barriers to care and adherence,
  5. management of chronic illness,
  6. support for caregivers,
  7. 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 addressing the lack of sickle cell providers in specific part of the state were identified as goals.

Addressing the geographic, transportation and time barriers with telemedicine. Currently about 40 percent of visits are done remotely, and families are giving lots of positive feedback.

  1. 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.
  2. Supporting our community during the Pandemic. As described, multiple online sessions led by community member and providers teams have been established to both supply support and maintain bonds within the community.
  3. Initial discussions have started on potential trait related priorities. Dr Katie Carlberg a SCH hematologist, and Katie Bergstrom, a genetic counselor are working with Dr Bender to develop a slide deck The DOH is supportive, and a new heme/onc genetic counselor is interested in being involved.
  4. A group interested in policy issues had met with plans to address increasing funding for NBS follow up, and a still undetermined focus related to pain. With the deep Pandemic related budget cuts this has temporarily been de-emphasized.