A lot of living can be done during those years. Without treatment, life expectancy is severely shortened. The treatment regimens are rigorous. A good support base is needed. It is also expensive treatment.
Insurance can help.
They have 501C non-profit status. This committee provides outreach and education to those at risk. Sometimes they have funds for financial assistance. If there is risk there should be testing. Help is not sought or given without true knowledge of one s situation.