There are a variety of sources from which patients and families can seek financial support specifically for cystic fibrosis care. Other sources provide assistance to people with any type of chronic medical need. The following information identifies the sources of financial assistance most commonly (and successfully) accessed by our patients.
 
While your main reason for obtaining health insurance is probably to provide a sense of security in covering medical expenses, dealing with insurance issues can be one of the most frustrating aspects of navigating the health care system. A cystic fibrosis social worker can help you sort through the different programs, but only you can determine which program or type of coverage is right for you.
 
I pay a lot of money every month for private medical coverage. Why is it so difficult to get services covered? 
Keep in mind that health insurance companies are businesses. They make the most money by paying for as few services as possible. Sometimes, we just have to fight the good fight when a necessary service is denied at first try. Letters, phone calls, and establishing a relationship with a customer service representative are all ways through which you can help speed up the approval process. It is also important to review your insurance policies and understand the benefits to which you are entitled. 

I can pick any number of insurance plans through my job. Which one is best? 
The type of coverage you select for yourself or your family should be considered from both a practical standpoint (convenience, cost) and meeting the specific health needs of a person with cystic fibrosis. There are many different types of “private” medical insurance policies. Some people have a broad choice of insurance plans through their jobs; others have more limited options. Managed care plans tend to be the least expensive but often limit services or choice of doctors. For example, many HMO's do not provide in-home services such as chest physical therapy, or, if they do, there are caps on the services that don't meet the needs of most cystic fibrosis patients. It is also important to make sure your cystic fibrois doctor participates in the plan you select. If not, you may incur out of pocket costs for going out of network. 
 
PPO's are more expensive but generally allow more access to the health care services you choose. You may be responsible for a co-payment, and/or deductible with every health care visit.
 
Your center's social worker will be able to assist you with information as well.

Don't all people with cystic fibrosis qualify for government sponsored insurance? 
Some, but not all, people with cystic fibrosis will be eligible for government-sponsored programs if they meet specific criteria. These criteria may be based on health status, geographic location, or income level. 
 
Who is eligible for Medicaid? 
The federal government sets the guidelines for the Medicaid program and each state designs the program. For people to be eligible for Medicaid, they generally must meet certain guidelines including income and resource level. In New York a child who is hospitalized for more than 30 consecutive days may be eligible for Medicaid.
 
Medicaid Managed Care was recently introduced into New York, and the programs are still changing rapidly. Call 1-800-505-5678 for additional information.
 
What is the difference between Social Security Insurance (SSI) and Social Security Insurance Disability (SSD)? 
SSI is an entitlement program that provides people who meet certain health/disability criteria with monthly financial assistance prior to normal retirement eligibility. The monthly benefits vary according to the person's financial circumstances. People who receive SSI automatically receive Medicaid as well. For more information about SSI please click on http://www.ssa.gov or speak to your center's social worker.
 
SSDI became effective in 1956 under Title II of the Social Security Act. SSDI provides monthly cash benefits for individual and dependents based upon a person's work history and whether he or she meets the definition of having a disability. People who receive SSDI will receive either Medicaid or Medicare.  Under Medicare, there is no prescription coverage. For more information click on http://www.ssa.gov or speak to your center's social worker.
 
Are there any programs to cover medical expenses for adults with cystic fibrosis who no longer qualify for their parents' plans? 
Yes—if you live in the right state and meet the eligibility requirements. 
 
The Adult Cystic Fibrosis Assistance Program (Over 21) is a New York State Assistance Program that provides reimbursement for cystic fibrosis related medical care, and/or insurance premium payments for patients with cystic fibrosis who are over 21 years of age. You must be a resident of New York State for 12 months or more and be ineligible for Medicaid.  For more information about this program, you may call Mr.. Stan Mathews at 518-474-1222 or speak to your center social worker.
 
The New Jersey State Organization of Cystic Fibrosis can help people 18 and older who have cystic fibrosis and live in New Jersey. This organization offers financial assistance for residents who earn less than $33,041 a year. The financial assistance may be used toward the purchase of food or nutritional supplements.