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The Treatment Team:
Who’s With You on This Journey

Transformative therapies for sickle cell disease—such as bone marrow transplant and gene-based treatments—require more than a single doctor. They involve a coordinated team of specialists working together to support your health, safety, and quality of life before, during, and after treatment.

How Your Treatment Team Works

Each member of your team brings a specific level of expertise, but they all work collaboratively to:

  • Evaluate your eligibility and readiness for treatment

  • Explain options, risks, and expected outcomes in plain language

  • Anticipate and manage side effects and complications

  • Support your emotional well-being and daily life needs

  • Plan for survivorship and long-term follow-up

 

Your care is most effective when medical knowledge and lived experience are treated with equal respect.

Team Roles & Responsibilities

* Images used are for illustrative purposes only and do not depict actual staff members.

Doctor

Hematologist - Sickle Cell Specialist

  • Serves as the lead physician for sickle cell management

  • Coordinates overall care and referrals

  • Helps determine eligibility for bone marrow transplant or gene-based therapies

  • Manages disease-related complications and long-term follow-up

Smiling Medical Professional

Primary Care Provider (PCP)

  • Oversees general health and preventive care

  • Manages non–sickle cell conditions (e.g., asthma, diabetes, infections)

  • Coordinates care outside of specialty settings

  • Often serves as the first point of contact for new symptoms

Male Doctor Portrait

Transplant Physician or Gene Therapy Specialist

  • Leads evaluation, treatment planning, and therapy delivery

  • Explains risks, benefits, and expected outcomes

  • Oversees inpatient care and early recovery

Smiling Nurse Portrait

Transplant or Gene Therapy Nurse Coordinator

  • Acts as a central point of contact

  • Schedules tests, procedures, and appointments

  • Helps navigate the treatment timeline and requirements

  • Answers questions between visits

Woman in Office

Social Worker

  • Supports emotional well-being and coping

  • Assists with housing, transportation, disability paperwork, and financial resources

  • Helps navigate caregiver requirements and family needs

Psychologist

Mental Health Professional

  • Screens for anxiety, depression, PTSD, or medical trauma

  • Supports emotional adjustment before and after treatment

  • Helps with identity shifts and survivorship transitions

Smiling Man Portrait

Pain Management Specialist

  • Supports chronic and acute pain care

  • Helps plan pain strategies during hospitalization and recovery

  • Addresses post-treatment pain that may persist

Smiling Female Doctor

Fertility Specialist (as needed)

  • Counsels on fertility preservation options

  • Supports family-planning decisions before conditioning therapy

Note: Your treatment team may change over time. Some specialists are more involved before treatment, others during hospitalization, and  a few others during long-term survivorship.

The Patient & Care Partner—Central Members of the Team

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You and your identified care partner are essential members of the primary care team:

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  • You bring lived experience, priorities, and goals

  • Your care partner supports day-to-day needs, communication, and recovery

  • Your shared decision-making is the key to successful treatment outcomes

Sickle Cell Prodigy

Important Questions
to Ask Your Care Team

Preparation + Process​​​​

  • What type of transformative therapy would you recommend given my health history (transplant vs. gene therapy)?

  • How does this treatment work to address sickle cell disease?

  • What kind of conditioning or chemotherapy is needed before the transplant or infusion?

  • Who will be part of my care team, and what are their roles?

 

Risk + Benefit

  • What are the short-term and long-term risks of this treatment?

  • What are some of the top concerns patients have about treatment and recovery?

  • Can you connect me with other patients or families who’ve gone through this treatment?

  • Are there potential side effects or unknown long-term outcomes with gene therapy?

  • What happens if the treatment doesn’t work as expected?

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Costs + Logistics + Recovery

  • Are there financial or travel barriers that I should plan for?

  • How long will I (or my child) need to stay near the treatment center?

  • How much of the treatment is covered by insurance?

  • How long does it take for the immune system to rebuild?

  • Will I need to take medications long-term after treatment?

  • How soon can I return to school, work, or normal activities?

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