Patients facing a life-threatening illness may need help understanding their disease and treatment options. When a patient needs a bone marrow or cord blood transplant (also called a BMT), the Office of Patient Advocacy can help patients, their families and health care providers.
The Stem Cell Therapeutic and Research Act of 2005, Public Law 109-129, includes the C.W. Bill Young Cell Transplantation Program (Program). The Program was authorized to help more patients have a successful cord blood or bone marrow transplant. The Office of Patient Advocacy (OPA) and Single Point of Access (SPA) are combined into one component of the Program.
According to the contract, the OPA/SPA will:
- Be an advocate for patients. This includes:
- Having case managers help patients, families and health care professionals, beginning from diagnosis and continuing through survivorship.
- Identifying and reducing barriers to transplant, including financial coverage and insurance.
- Communicating with patients in a manner understandable to them, such as providing information that fits with the patients’ culture and language.
- Ensuring patient confidentiality throughout the search and transplant process.
- Conducting patient satisfaction surveys and identifying ways to improve the resources and services of the OPA/SPA.
- Evaluating the need for bone marrow or cord blood transplants and for donors and cord blood units, with special emphasis on people from racially or ethnically diverse backgrounds.
- Provide information to patients, families and health care professionals, such as:
- Diseases that may be treated with a bone marrow or cord blood transplant.
- The transplant process, from diagnosis through survivorship.
- Other treatment options.
- Patient outcomes and transplant costs for each transplant center in the Program.
- Provide an efficient search process through one electronic system (Single Point of Access). This process will:
- Allow patients and doctors to electronically explore the possibility of finding a donor or cord blood unit.
- Search worldwide for all sources of cells.
- Allow a cord blood unit to be reserved or begin further testing of a potential donor.
- Provide updates of the search progress to patients, doctors and transplant centers.
- Provide experts to guide patients and health care professionals through the search and tissue typing processes.
- Plan for public health emergencies requiring bone marrow or cord blood transplants.
- Develop and maintain a Program Web site.
- To view a summary of plans for this Web site, see Web Site Content Inventory.
- Please provide feedback about this Web site.
To learn about the contractor for the OPA/SPA, see National Marrow Donor Program, a Program Contractor.
