Medicaid: Cell and Gene Therapy for Sickle Cell Disease
The Wisconsin Department of Health Services is participating in a new federal program that will help Medicaid members who have sickle cell disease get access to cell and gene therapy. The Centers for Medicare & Medicaid Services (CMS) is working with drug companies to make this treatment more available to people with Medicaid coverage.
What is cell and gene therapy?
Cell and gene therapies treat rare and severe diseases, such as sickle cell disease, by precisely correcting the mutation in the person's genes that is causing the disease. These therapies may improve quality of life, increase life expectancy, and even approach a cure for people living with sickle cell disease.
Two new treatments were approved in December 2023 by the Food and Drug Administration (FDA) to treat sickle cell disease. They are the first of their kind for people who have sickle cell disease in the United States.
The CMS sickle cell disease gene therapy care journey (PDF) shows the steps a person may go through when receiving cell and gene therapy for sickle cell disease.
How do I know if cell and gene therapy is an option for me?
Ask your hematologist if you might be a candidate for cell and gene therapy.
You can also connect with others who have sickle cell disease through the organizations listed in the Community resources and support section on this page.
What if I don't have a hematologist?
If you have sickle cell disease and do not already see a hematologist, ask your regular health care provider for a referral to one.
What is a hematologist?
A hematologist is a health care provider who specializes in diagnosing, treating, and managing diseases that affect your blood cells.
What is sickle cell disease?
Sickle cell disease is an inherited disorder that affects red blood cells. People with sickle cell disease have red blood cells that become hard and pointed instead of soft and round.
Sickle cell disease cause anemia, pain, and other problems when blood can’t get oxygen to the organs. It can also lead to chronic pain, infections, lung tissue damage, blindness, kidney disease, and stroke.
Community resources and support
Sickle Cell Warriors of Wisconsin
Sickle Cell Warriors of Wisconsin is the local chapter of the Sickle Cell Disease Association of America, Inc. (SCDAA) and provides support to individuals and families affected by sickle cell disease.
Through Sickle Cell Warriors of Wisconsin, you can:
- Join monthly virtual meetings about various sickle cell disease-related topics.
- Learn more about treatment options, including cell and gene therapy.
- Connect with individuals and families affected by Sickle Cell Disease and get peer-to-peer support.
- Learn about resources and support options
Connect with advocacy efforts to improve the lives of people affected by sickle cell disease.
Get support from Sickle Cell Warriors of Wisconsin
Sickle Cell Warriors of Wisconsin is your local contact for support and information.
Sickle Cell Disease Association of America
Sickle Cell Disease Association of America, Inc. (SCDAA) works with more than 48 community-based organizations and programs that partner with medical facilities and local and state government agencies to advocate for people affected by sickle cell and work to find a cure. They empower community-based organizations like Sickle Cell Warriors of Wisconsin to increase awareness and improve the quality of life for people with the disease.
SCDAA’s national efforts have six areas of emphasis:
- Research
- Public health education
- Professional health education
- Patient services
- Community services
- Support to global organizations and practitioners
Member questions and answers
You can be treated at any of the following qualified treatment centers.
Ann & Robert R. Lurie Children’s Hospital of Chicago
225 E. Chicago Ave.
Chicago, IL 60611
312-227-4000
You may be able to get a free ride to your appointments if you have no other way to get there. You can travel with a support person as long as you notify the non-emergency medical transportation (NEMT) provider when you schedule your ride.
To book, manage, and cancel trips online, visit the MTM Link Portal.
Transportation for any sickle cell disease-related appointment is considered a critical care ride. You should try to schedule a ride to your medical appointments as far in advance as possible. When that is not possible, members with sickle cell disease are able to request same day rides. When scheduling your ride, tell them if it is related to sickle cell disease.
If you are undergoing cell and gene therapy far from home, you may also qualify for lodging and money for meals. The NEMT manager will work with you to arrange lodging and meal options that meet your needs.
Patients receive chemotherapy as part of the cell and gene therapy treatment, which could result in infertility—the inability to have children in the future—in both men and women.
Fertility preservation is the collection, freezing, and storing of reproductive material that could be used to try and conceive a child at a future date. This service is available for both men and women.
If you will be receiving cell and gene therapy, talk to your provider about fertility preservation to find out if you qualify and how to access it. Fertility preservation is not a covered Medicaid benefit but may be available at no cost through the drug companies.
If you are receiving cell and gene therapy, you will be permanently moved to fee-for-service Medicaid instead of an HMO or other managed care plan. You will be able to keep your existing providers and have access to the same provider networks, but you will not have access to other services provided by managed care plans such as wellness incentives and care coordination.
For questions about coverage, call ForwardHealth Member Services at 800-362-3002.