New Jersey State Organization of Cystic Fibrosis
     Updated: May 9, 2008
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NJSOCF Adult Program

Since 1990, the New Jersey State Organization of Cystic Fibrosis has administered a special state-funded program, "Pharmaceutical Services for Adults with Cystic Fibrosis."

As more and more patients reach adulthood, they face increasing financial burdens and difficulty financing the high costs of living with cystic fibrosis.

In response to the increasing needs of adult patients, NJSOCF developed a plan for an adult program, now funded by the State of New Jersey. Services are available to New Jersey patients age 18 and over whose incomes meet state eligibility requirements.

Direct service components of the program include assistance with paying for prescription medication; medical equipment and supplies; nutritional supplements; and extra nutritious food. The program will also pay a health insurance deductible.

Adults from every county in New Jersey are currently enrolled in the adult program and new patients are welcome to apply.


The adult program provides financial assistance for:

  • Prescription drugs and co-payments. With a doctor’s prescription, eligible CF patients can receive assistance paying for medication needed to treat cystic fibrosis. The program reimburses patients for health insurance co-pays. Medications can include: digestive enzymes such as Pancreas; antibiotics such as Cipro, Tobi, and Pulmozyme, as well as other CF related drugs.

  • Medical equipment and supplies. Eligible patients can receive assistance in paying for home care equipment and medical supplies needed to treat CF. Items include percussors; compressors and nebulizers; oxygen concentrators ad home IV’s.

  • Nutritional supplements. A variety of nutritional supplements, including vitamins and prepared supplements such as Ensure, Scand Shakes, and nutritional bars such as Boost and Balance can be provided to CF patients.

  • Extra nutritious foods. A fixed monthly amount is available to patients to help defray the expenses of the extra food that they require. Covered food items include milk and dairy products, meats, fruits and vegetables, breads and cereals.

  • All of the above are provided according to mandated limits established by the program.

Other Services for Adults

  • Coverage of health insurance deductible. Financial assistance of up to $500 per year is available to help meet the cost of the deductible on the health insurance policy for adults with CF age 18 and over who meet the programs income limits. This financial assistance may be provided in addition to assistance for prescription drugs, medical supplies and equipment, nutritional supplements and extra nutritious foods.

  • Public and patient education. NJSOCF provides a variety of educational pamphlets and brochures on diagnosis, treating, and living successfully with the disease.

  • Patient counseling. NJSOCF provides one-on-one counseling about available treatment, services and benefits available to patients. The organization is known for always “being there” to provide much-needed emotional support to patients and families.

  • Referrals. NJSOCF refers patients to appropriate medical and social services resources throughout the state of New Jersey. These include hospitals and other special programs that offer assistance to CF patients.

The overall objective of the adult program is to enable cystic fibrosis patients throughout the state to continue to lead their lives as productive members of the New Jersey community.


Getting Social Security Disability and/or SSI

Many cystic fibrosis patients quality for Social Security Disability and/or SSI. By law, all disabled individuals are entitled to file for benefits. Here are a few basic facts to get you started in the claims process.

What is social security disability?
Under the federal Social Security Disability Act, "disability" means the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which has lasted or is expected to last for a continuous period of not less than 12 months.

Social Security Disability benefits (SSD) are paid to individuals who have worked in recent years. Usually you have to work five out of the last 10 years to qualify. For individuals under 31 years old, the requirements are different since they have not been in the work force as long.

Supplemental Security Income benefits (SSI) are paid to individuals with low incomes who are disabled whether or not the individual has worked in the past. SSI child's
disability benefits are paid to children who are under 18 years old, are disabled and have parents or guardians classified as poor.

Who is eligible?
If you work long enough at a job covered under the provisions of the Social Security Act and are disabled by cystic fibrosis, you may be eligible for disability benefits because CF is recognized as a disability by the Social Security system.

The test for eligibility is not whether you can go back to a job you have lost, nor is it whether you have been able to find a job recently. The test is whether you are physically and emotionally capable of doing a job generally available in the every day workplace.

To obtain benefits, you must have a doctor state you are disabled and therefore unable to work. In some cases the application process can be complicated, and you may require the assistance of an attorney.

To begin the claims process, contact your local Social Security Office or visit the Social Security web site: www.socialsecurity.gov and go to "disability claims."


Survey says NJSOCF is "tops!"

When the results of a survey of patient satisfaction with NJSOCF's state-funded Adult Program, "Pharmaceutical Services for Adults with Cystic Fibrosis," went out this spring, NJSOCF thought the results would be good. But we were totally thrilled and gratified with the overwhelmingly positive stamp of approval that we received.

From one end of New Jersey to the other, patients said that NJSOCF and the services we provide to adult patients are "tops." Here are a few comments.

  • Any time I have needed anything, all I had to do was ask. (Red Bank)

  • This program is unique in that not only does it help with the cost of numerous monthly prescriptions but it has allowed me to buy food and supplements that I like. Over the past two years I was finally able to overcome being underweight - I gained 20 lbs! (Linden)

  • The nutritional supplements and food program have helped me tremendously since I am on a very limited income and need the extra calories to maintain my health. (Mount Laurel)

  • I feel that I have a friend that will help. It helps me to be independent. It takes the worries away. Now I can meet some of my payments for groceries, nutritional supplements and medical bills. (Plainsboro)

  • In this economy you never know what is going to happen. At least we have this program, I cannot do without my meds - I want to live a long life. (Mahwah)

  • I feel that the staff goes out of their way to help me any way possible. I have never met any of them but because of their friendliness and helpful nature I feel like I know them personally. They really do their jobs well and go above and beyond. (Belvidere)

  • This program is the first assistance we have received since I was diagnosed in February of 1990. (Point Pleasant)

  • If it were not for this program I don't know what our family would do. This organization is really a true blessing. (Bordentown)

Pharmacy Services

For adults on the Program, the following pharmacies will bill NJSOCF directly for eligible expenses.

Cystic Fibrosis Pharmacy, Inc.

"The CF Pharmacy is an independent, full-line pharmacy. It is your pharmacy, offering consultations, products for home health care, durable medical equipment and supplies, nutritional supplements, disease case management, and participation in clinical medical trials to help conquer Cystic Fibrosis, formed in response to the needs of CF patients, our pharmacists bring over 30 years of experience in filling prescriptions-with special training in medications for the CF patient. We are truly your "One Stop Does It All" pharmacy."
(800) 741-4427               www.cfpharmacy.com

Pathmark Store Pharmacy

CF adults on the program can fill their prescriptions and NJSOCF will be billed directly.


How to Apply

Simply call the NJSOCF Adult Program Administrator at (973) 595-1003 to receive an application for direct financial help from the Pharmaceutical Services for Adults with Cystic Fibrosis program.

An Application Form for downloading and printing is available at our web site. Click Here

To receive additional information, you may call the number above or write to:

 

 

Pharmaceutical Services for Adults with Cystic Fibrosis
New Jersey State Organization of Cystic Fibrosis
PO Box 3648
Wayne, NJ 07474-3648
 

E-mail Us: darm@njsocf.org

Application Form: Click Here

To expedite the application process, please make sure that all of the information you provide is accurate, up to date and verifiable. Please call if you need assistance with completing your application.

NJSOCF urges eligible adult patients throughout the state to apply for assistance. Funds are available now to help meet your needs.



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New Jersey State Organization of Cystic Fibrosis, PO Box 3648 Wayne, NJ 07474-3648
Phone: 973-595 -1232

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