Cystic Fibrosis

HWF Direct, LLC, has been engaged to administer New York State’s Adult Cystic Fibrosis Assistance Program (ACFAP). As administrator of the program, HWF Direct will provide grant support services to provide copayment assistance for medical care related to Cystic Fibrosis, including prescription drug and device costs, and medical and behavioral health services, and insurance premium assistance to include medical, vision, and dental premiums, to eligible New York state residents living with Cystic Fibrosis.

To apply for a grant support through New York State’s Adult Cystic Fibrosis Assistance Program, contact HWF Direct Monday – Friday, 9:00 a.m. – 5:00 p.m. EST at 1-855-226-2295.

Cystic Fibrosis is an inherited disease that causes the body to make unusually thick, sticky mucous that clogs the lungs and can cause lung-infections. It also blocks other major organs in the digestive system. Early detection and treatment can improve the quality and length of life for individuals with this disease.

What is Cystic Fibrosis?

Cystic Fibrosis (CF) is an inherited disease that causes the glands that make mucous, saliva and sweat to not work properly. The mucous is sticky instead of thin and slippery and chokes the lungs and can block openings in other major organs, which makes it difficult to break down and absorb food. CF can cause permanent liver damage.

How Common is Cystic Fibrosis?

CF is one of the most common inherited diseases of Caucasians (whites). CF occurs in one of every 3,200 live Caucasian births. It occurs in one in every 15,000 live African-American births. CF is uncommon in Asians and most Native American tribes. It is being seen more often in Hispanics. CF affects almost every race. About 1,000 new cases of CF are diagnosed each year.

Can I "Catch" Cystic Fibrosis?

No. CF is a disease that a person is born with. It comes from a defective gene from each parent. Genes are the main unit of heredity. Not all people carry the defective gene that causes CF, so if one parent has the gene and the other does not, the child will not have CF. You cannot control which genes get passed to your child.

What Are the Symptoms of Cystic Fibrosis?

People with CF can have several symptoms including very salty-tasting skin; steady coughing at times with phlegm; wheezing or shortness of breath; a huge appetite but remains thin; and large, greasy stools. These symptoms are different from person to person.

How Is Cystic Fibrosis Diagnosed?

The main test for CF is called the sweat test and it measures the amount of salt in sweat. Starting in 2002, all babies born in New York State are tested at birth as part of a series of tests on newborn babies. If there is reason to think a child has CF, the test should be done in an accredited CF Care Center.

How Is Cystic Fibrosis Treated?

There are many treatments for the symptoms and CF related problems. Treatment is aimed at preventing lung infections, reducing the amount and thickness of mucous in the lungs, improving airflow and maintaining nutrition.

Is There a Cure For Cystic Fibrosis?

There is no cure for CF at this time, but ongoing research has led to advances in treatment, which have significantly improved the lives of many CF patients. New discoveries in the treatment of CF have helped people with the disease live longer. Twenty years ago, only half the people with CF lived beyond age 21, but today half the people with CF live past 35 years of age.

How Can I Get Help?

NYSDOH Programs for Children with Cystic Fibrosis

Additional Resources