Patient Support
At Montefiore Einstein, we’re committed to providing comprehensive support and resources for patients living with sickle cell disease (SCD). Recognizing the multifaceted needs of individuals with this condition, we offer a range of services aimed at enhancing patient care and improving overall well-being.
Frequently Asked Questions
Our goal is to empower patients with sickle cell disease with the knowledge and tools they need to thrive.
A: Clinics and telehealth visits are available every weekday.
A: The frequency of visits to your provider depends on the nature of the symptoms you’re experiencing and whether there are any concerns about organ function.
A: Sickle cell providers are not primary care physicians, although they do monitor the overall effect of sickle cell disease on your body. Primary care addresses your health concerns, which are not related to sickle cell disease.
A: Hydrea (hydroxyurea) has been shown to prolong life in people with sickle cell disease by preserving kidney, heart, liver and brain function. This medication decreases the number and length of vaso-occlusive crises.
A: Transfusions are used to improve symptoms if an organ is being damaged (stroke, sickle in the liver, maternal/fetal complications, acute lung injury, priapism, leg ulcers and sometimes acute/chronic pain).
A: Possible long-term complications of SCD include kidney failure requiring dialysis, strokes, bleeding into the brain, heart failure, iron overload from transfusions causing heart and liver failure and hemolytic reaction to transfusions which prohibit their use.
A: A sickle trait means you’ve inherited one sickle cell gene from either your mother or father, whereas sickle cell disease means you’ve inherited the gene from both parents. One gene does not cause the disease, but it may have some consequences.
A: Sickle thalassemia can be a milder disease than sickle cell (S-Thal vs SS), especially when it is associated with the production of some normal hemoglobin A.
A: It’s important to use reliable sources to stay informed about the latest facts and research regarding sickle cell disease and related complications. The Center for Disease Control (CDC) is a great resource to learn about the nature of this disease and how to manage it.
Pain Management & Power Over Pain (POP) Clinic
Pain associated with sickle cell disease is both acute and chronic and requires different treatment regimens. We prioritize access to prescriptions and pain management to avoid pain crises or withdrawal. With our Power Over Pain Clinic, Medical Cannabis Clinic and timely refill of prescriptions, our dedicated team strives to alleviate chronic pain, improve quality of life and empower patients with effective strategies for managing pain associated with sickle cell disease.
Medical Home Health Services
We’ve successfully collaborated with the New York State Department of Health to change its guidelines for Health Home enrollment, making sickle cell disease a single qualifying condition. For patients enrolled in Medicaid, our Medical Health Home Services offer convenient support for patients struggling with visit compliance or medication adherence. This service provides home-based assistance to ensure accessibility and convenience for patients.
Social Services
To ensure holistic care, each sickle cell patient is paired with a social worker who can help them access support for finances, housing, transportation and other practical needs. Our social workers are highly knowledgeable about government programs and community organizations and are here to assist patients and their families with patient advocacy, referral services and any other information they need to minimize stress and stay healthy.
Community & Support Initiatives
We facilitate outreach to community resources in the Bronx and Westchester and collaborate with the Sickle Cell/Thalassemia Patients Network (SCTPN) and the New York State Sickle Cell Advocacy Network to provide comprehensive support and resources for individuals affected by sickle cell disease.
Gene Therapy Certified Treatment Center
We are one of the few gene therapy certified treatment centers for sickle cell disease in the country. Gene therapy is an FDA-approved treatment that has been shown to cure sickle cell disease by correcting or replacing the gene responsible for producing abnormal hemoglobin. For eligible patients affected by the condition, this innovative approach holds hope for providing a long-term cure and improving their quality of life.
Manage Your Healthcare Online with Montefiore Einstein MyChart
We understand the importance of staying connected to your care when managing sickle cell disease, which is why we encourage patients to use Montefiore Einstein MyChart for convenient and continuous support. Using MyChart, you can:
- Have face-to-face video appointments with your doctor
- Schedule or request appointments
- Send secure messages to your doctor
- View and pay bills securely
