State Action Plans

During our current project period, one of the directives from the Health Resources and Services Administration (HRSA) was for each region to develop a Regional Sickle Cell Action Plan and state-specific Sickle Cell Action Plans that:

  1. identify resources in each region and state to improve sickle cell care for all individuals with sickle cell in the region and
  2. 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 Pacific Sickle Cell Regional Collaborative (PSCRC) provides financial and technical assistance to Core and Affiliated Centers in all 13 states within our region. Centers receiving core funding (AZ, CA, CO, NV, OR, and WA) were required to lead the development of a Sickle Cell State Action Plan for their respective geographic area.

We have made excellent progress in state action planning, holding face-to-face meetings and mentoring meetings between PSCRC leadership and state leads to determine the unique aspects of each state that will be addressed by the individual plans. PSCRC leadership provides technical assistance to state leads in developing partnerships, specifically in relation to community based organizations and state and regional agencies.

Each site lead was responsible for summarizing their state’s action plan. Below you will find icons of each state that developed a state action plan. Click on the icon of the state, whose action plan you wish to read.

For any questions regarding the initiative as a whole, please contact Shalini Vora, MPH at svora@c3dibd.org and if you have any 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 any one of the following individuals:

Neha Bhasin, MD at bhasin@peds.arizona.edu

Sanjay Shah, MD at sshah2@phoenixchildrens.com

Esteban Gomez, MD at egomez@phoenixchildrens.com

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/

Sickled Not Broken Foundation of Nevada; https://www.sicklednotbroken.org

Adult Sickle Cell Disease Foundation of Nevada; https://ascdfofnv.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 Dr. Trisha Wong invited providers (hematologists, hospitalists, social workers, etc.) to come 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:

2019:

With 23 “SCD Champions”, Dr. Wong successfully partnered with OHSU’s Office of Clinical Integration and Evidence-Based Practice to write evidence-based guidelines on pain management, focusing on inpatient acute vaso-occlusive episodes. In July 2019, OHSU applied and was accepted to attend American Society of Hematology’s Adult SCD Clinic Workshop in Nov 2019.

The next goal is to build a strong hematology clinic to support adults living with SCD. The target population will include adults in Oregon and Southwest Washington with SCD who are lost to medical care and the OHSU team will work to strengthen the adolescent-young adult transition program to prevent loss of further patients.

2020:

In early 2020, Drs. Melinda Wu and Trisha Wong (Pediatric hematologists) were approached by a mom of a patient to discuss starting a new SCD community based organization (CBO) in Oregon. Since then, we have drafted our mission, objectives, and bylaws and started identifying the Board of Directors. The Hemophilia Foundation of Oregon has generously “adopted” us and shared many resources, including introducing us to George Okulitch, their state lobbyist. This CBO will ideally fulfill a critical function of patient support, education, and state-level advocacy.

Transition clinic: Based on the work we have and are doing already, the OHSU SCD clinic was chosen as one of 3 clinics to pilot a hospital-wide, department-sanctioned transition program. We are actively partnering with our medical record team to build surveys and tools. In the meantime, we are building partnerships with internal and external hematology clinics in an effort to identify adult providers statewide who can formally be part of our transition program.

We have also unofficially partnered with our Department of Family Medicine to be PCPs for our most complicated patients with SCD. We have 3 patients who have successfully transitioned from their pediatric PCP to their FM PCP. With this partnership, FM has provided holistic care around pain management, including counseling, opioid prescriptions, and buprenorphine/naloxone support when needed and Peds Hem/Onc provides continued management of hydroxyurea and other SCD-specific diagnoses and interventions and provides education to FM faculty and trainees about hemoglobinopathies, bias, and pain management.

Telemedicine: With the onset of COVID-19, pediatric hem/onc was fortunately in the first wave of clinics to come onboard with telemedicine. By the last week of March 2020, we were seeing patients by virtual visit. We plan on incorporating virtual visits even after clinic operations return to normal. Our tentative plan is to alternate in-person (with in-hospital labs) and virtual visits (with local labs) for our patients on hydroxyurea. We also hope to utilize virtual visits for adjuvant care and education, such as meeting with social workers, dieticians, physical therapists, etc, in hopes of decreasing impact and time away from work and school. We have asked to be active in any efforts to encourage health plans to continue to reimburse at a competitive rate for virtual visits even once COVID has ended.

Immunizations: Ever since a healthy young student at the University of Oregon died from meningitis in 2014, OHSU pediatric hematology has ensured all patients with surgical or functional asplenia has received their asplenia vaccines. The current PSCRC QI project will help us improve our adult immunization rates.

If you have any questions or concerns, please contact Dr. Trisha Wong at (503) 418-5150.

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.

Significant progress was being made but the Pandemic has altered the course and focus of many activities. made on several fronts.

  1. 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.
  2. Though not initially identified as a goal a meeting of community members, pediatric and adult providers identified transition as a priority, and several follow up meetings are taking place.
  3. 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.
  4. Informal discussions have started on potential trait related priorities. The DOH is supportive, and a new heme/onc genetic counselor is interested in being involved.
  5. 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.

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