What’s the Cost of Sickle Cell Anemia Treatment?
Key takeaways:
Sickle cell disease (SCD), also known as sickle cell anemia, is an inherited blood condition. It affects about 100,000 individuals in the U.S.
The cost of treating SCD can exceed $1.6 million over a lifetime. For people with commercial health insurance, lifetime out-of-pocket costs for SCD treatment can be more than $40,000.
Two potentially curative treatments were approved by the FDA in 2023. They are among the most expensive treatments in the world for any health condition. Casgevy had an introductory list price of $2.2 million, and Lyfgenia debuted with a cost of $3.1 million. Current prices may be lower.
Table of contents
Sickle cell disease (SCD) is a genetic condition that causes typically round blood cells to have a sickle or crescent shape. This prevents sufficient blood flow. As a result, people with SCD can experience pain events, infections, strokes, and a shortened life expectancy.
SCD affects about 100,000 individuals in the U.S. The disease is common among people with African and Latino ancestry. SCD affects 1 out of every 365 Black American births and 1 out of every 16,300 Hispanic American births.
The cost of SCD treatment can exceed $1.6 million over the lifetimes of people ages 64 and younger with the condition. (The average life expectancy is 52.6 years for Medicare and Medicaid enrollees with SCD based on 2008 to 2016 claims data. Medicare typically covers people 65 and older. But many younger people with SCD qualify for Medicare or dual Medicare-Medicaid coverage.) People with SCD who are younger than 65 and are covered by commercial health insurance pay more than $44,000 in out-of-pocket medical costs over their lifetimes. That’s nearly 3 times as much as people without SCD.
How much does sickle cell treatment cost?
The cost of sickle cell anemia treatment depends on what medical care you receive. This includes the expenses associated with managing a chronic condition, which include preventive medications.
You can also expect costs related to treatment for pain events and other conditions that result from your SCD. These include:
ER trips
Hospital stays
Testing
Treatments needed for stem cell replacement preparation, such as chemotherapy
What is sickle cell disease? This inherited blood disorder, known as sickle cell anemia, causes red blood cells to become stiff and change shape. This leads to acute pain and other symptoms.
How much is testing? Because sickle cell disease is genetic, it’s important to know if you and your partner have the trait before you have children. Find out how much you can expect to pay for these tests and how to access them for free.
Living with sickle cell. People who have sickle cell disease manage the condition with pain medication and supplements as well as by avoiding triggers such as stress and lack of sleep.
According to a 2022 analysis of SCD cost studies, the highest costs for people with this condition are inpatient hospital expenses, followed by outpatient care and medications. The same analysis found that the effects of SCD that contribute to the use of healthcare resources include vascular and organ damage and adverse effects of effective therapies.
Medication costs
Generic hydroxyurea (Droxia, Siklos, Hydrea) is a common sickle cell anemia medication taken daily. The cash price for 30 tablets of 300 mg Droxia can cost an average of $38.77. But you could pay as little as $26.48 with a GoodRx coupon at select pharmacies. Depending on the dose, generic hydroxyurea can cost even less with a GoodRx coupon.
How much does a bone marrow transplant cost?
A bone marrow transplant can be a close-to-curative treatment for people with SCD. The cost of a bone marrow transplant for the person on the receiving end can be $200,000 to $400,000. This includes:
Pretransplant evaluation
Transplant hospital stay
Posttransplant follow-up care
One study found that a bone marrow transplant cost about as much as 10 hospital admissions for SCD.
How much do Casgevy and Lyfgenia cost?
Two new gene therapy treatments, Casgevy and Lyfgenia, are possibly curative. But they’re inaccessible for most people because of cost. Both were approved in late 2023. The single-course treatments cost $2.2 million for Casgevy and $3.1 million for Lyfgenia. Both therapies involve infusions. By late 2024, their list prices were slightly lower but still over $2 million each.
Oxbryta was a daily oral medication approved by the FDA to treat pain and anemia in people with sickle cell. But the manufacturer withdrew it from the market in late 2024 because of safety concerns.
Factors associated with the high cost of living with sickle cell disease
The costs of managing SCD go beyond ER trips, hospital stays, and prescriptions. Some of the other costs, which may not be obvious, stem from the condition’s contribution to:
Lost income
Reduced ability to work
Career and education setbacks
Mental health challenges
A cost analysis in 2023 found that a person with SCD lost $700,000 in income over their lifetime compared with similar individuals without the condition.
Is financial support available for people with sickle cell disease?
There is financial help for people with SCD, including the following resources:
The Assistance Fund: In 2023, this organization started an SCD financial assistance program. It helps people with out-of-pocket medical costs related to SCD. In 2025, the program had a waitlist for enrollment.
HealthWell Foundation: This organization’s grants cover insurance premiums and copays for people with SCD. But as of late April 2025, the program was temporarily closed for lack of funding.
MTS Sickle Cell Foundation: This foundation provides temporary financial assistance to help with rent and utilities. To be eligible, families must meet income guidelines and have lost income due to SCD.
Patient Advocate Foundation: This health equity fund helps people with SCD who live in areas with the highest social vulnerability scores and chronic condition rates in the U.S. The maximum award is $3,500 per year. It can be used to cover insurance premiums, deductibles, copays, and coinsurance.
PAN Foundation: This organization offers grants of up to $2,000 per year for people with SCD. But as of late April 2025, it was not accepting new or renewal applicants. The waitlist remains open.
Sickle Cell Disease Association of America: This organization provides links and resources that may be helpful to individuals with SCD and their caregivers.
What are some treatment options for sickle cell anemia?
There are different approaches to managing the symptoms of sickle cell disease. SCD treatment typically helps people:
Manage the condition and prevent pain events
Address pain and reduce severe symptoms
Potentially cure the condition
People with SCD tend to have less access to comprehensive care than people with other complex hereditary conditions, such as cystic fibrosis or hemophilia. Those who do have access to a comprehensive care team usually have a primary care physician or pediatrician, a blood specialist (hematologist), and other healthcare providers who create and follow a treatment plan. Beyond medications and potentially curative treatments, this plan may include exercise, massage, hydration, and other interventions.
Medications
Several prescription medications are commonly used to prevent or treat SCD pain events. They are:
Hydroxyurea: This reliable oral preventive medication for adults and children with SCD can help lower the frequency of pain events. This was the only FDA-approved medication to treat SCD until 2017. It has also been shown to lower the need for blood transfusions in adults.
Crizanlizumab (Adakveo): Crizanlizumab is an IV medication. It can help lower the frequency of pain events in people ages 16 and older with SCD.
L-glutamine (Endari): Endari is a powder that’s mixed with food or liquid. It is then taken orally to reduce the frequency of pain events for people ages 5 and older with SCD. This medication is available only as a brand-name drug from specialty pharmacies.
Opioids: Pain medications may be prescribed to treat moderate-to-severe pain. These include oxycodone, hydrocodone, hydromorphone, and morphine.
NSAIDs: Nonsteroidal anti-inflammatory drugs (NSAIDs) may be used to treat mild pain events. Ibuprofen (Advil, Motrin) is available over the counter (OTC) and by prescription, depending on the dose.
Acetaminophen (Tylenol): Tylenol is available OTC in various doses to treat mild pain.
Bone marrow transplant
Before 2023, bone marrow transplants were the only option close to a cure for SCD. This procedure replaces the patient’s stem cells (that make the crescent-shaped blood cells) with a donor’s stem cells (that make healthy, round red blood cells). But finding a donor is often challenging, and the procedure has significant risks, such as:
Rejection
Infection
Damage to organs
Financial toxicity — medical debt and other economic hardships due to a health condition
Gene therapy
In 2023, the FDA approved two new sickle cell treatments: Casgevy and Lyfgenia. These are used for people with SCD who are ages 12 and older and have a history of pain events. These interventions work by changing DNA or adding new DNA. They are the first gene therapies that could cure a hereditary condition. Casgevy is the first approved medication that uses the gene-editing tool CRISPR.
These therapies modify the stem cells of a person with SCD. This enables them to produce healthy red blood cells that have a normal shape. The treatment also raises oxygen levels in the blood and allows blood to move more freely through the body. Unlike a bone marrow transplant, these SCD therapies don’t need a donor.
The process for getting these treatments can take months. If you have SCD and are interested in gene therapy, ask your clinical team if it’s a good treatment option for you.
Hospital treatment
Sometimes an SCD pain episode requires an ER trip or even a hospital stay. Treatments may include IV pain medications, IV fluids, and blood transfusions.
Is sickle cell disease covered as a disability?
SCD can be covered as a disability for an adult or a child. An applicant must show evidence of an impairment due to SCD symptoms. In addition, the applicant must have complications due to SCD for at least 12 months. But some families seeking disability approval for their children with SCD have faced challenges.
For help applying for Social Security benefits, contact the Social Security Administration online, by phone, or in person. You may qualify for Social Security Disability Insurance or Supplemental Security Income.
The bottom line
The cost of sickle cell anemia treatment is ongoing for this chronic genetic condition. For a person age 64 or younger with SCD, lifetime treatment can cost more than $1.6 million. Lifetime out-of-pocket costs associated with SCD exceed $40,000 for a person with commercial insurance. The highest medical costs for people with SCD are inpatient hospital expenses, followed by outpatient care and prescription medications.
For people who pursue a bone marrow transplant for relief, the cost can range from $200,000 to $400,000. Two potentially curative treatments were approved in 2023. But each can cost $2 million or more.
There are also hidden quality-of-life costs from SCD. These include lost income, inability to work, career and education setbacks, and mental health challenges.
Why trust our experts?
References
American Society of Hematology. (2022). The cost of living with sickle cell disease.
Ashorobi, D., et al. (2023). Hematopoietic stem cell transplantation in sickle cell disease. StatPearls.
Baker, C., et al. (2024). How increased use of gene therapy treatment for sickle cell disease could affect the federal budget. Congressional Budget Office.
Baldwin, Z., et al. (2022). Medical and non‑medical costs of sickle cell disease and treatments from a US perspective: A systematic review and landscape analysis. PharmacoEconomics.
Centers for Disease Control and Prevention. (2024). Steps to better health toolkit: Managing acute pain.
Centers for Disease Control and Prevention. (2024). Steps to better health toolkit: Managing chronic pain.
Cronin, R. M., et al. (2023). The use of FDA-approved medications for preventing vaso-occlusive events in sickle cell disease. Blood Advances.
Emmaus Medical. (2020). Endari (L-glutamine oral powder) [package insert].
Erickson, B. (2023). Thousands of Black children with sickle cell disease struggle to access disability payments. CBS News.
Grosse, S. D., et al. (2009). Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics.
Howard, L. (2025). Sickle cell disease and social security. U.S. Social Security Administration.
Jiao, B., et al. (2023). Long-term survival with sickle cell disease: A nationwide cohort study of Medicare and Medicaid beneficiaries. Blood Advances.
Johnson, K. M., et al. (2023). Lifetime medical costs attributable to sickle cell disease among nonelderly individuals with commercial insurance. Blood Advances.
Lin, K. (2023). Will the high price of gene therapy for sickle cell disease put this cure out of reach? American Family Physician Community Blog.
Lothe, P., et al. (2015). Comparative cost analysis of therapy in sickle cell anemia: Supportive care vs. bone marrow transplant. Blood.
MacMillan, C. (2023). Casgevy and Lyfgenia: Two gene therapies approved for sickle cell disease. Yale Medicine.
National Heart, Lung, and Blood Institute. (2014). Evidence-based management of sickle cell disease: Expert panel report, 2014. National Institutes of Health.
National Marrow Donor Program. (n.d.). What is sickle cell disease?
Novartis Pharmaceuticals. (2024). Adakveo (crizanlizumab-tmca) injection, for intravenous use [package insert].
Shapiro, L. (2023). Bluebird set for Lyfgenia’s launch after ‘remarkable’ approvals. Sickle Cell Disease News.
Social Security Administration. (2017). SSR 17-3p: Titles II and XVI: Evaluating cases involving sickle cell disease (SCD).
U.S. Food and Drug Administration. (2023). FDA approves first gene therapies to treat patients with sickle cell disease.
U.S. Food and Drug Administration. (2024). FDA is alerting patients and health care professionals about the voluntary withdrawal of Oxbryta from the market due to safety concerns.
Wosen, J. (2023). Bone marrow transplant advance could widen use of this less buzzy cure for sickle cell disease. STAT.
