 |
 First things first..... 1. Don't read any newspaper or book printed prior to 1998. Cystic Fibrosis information changes very rapidly. There has been a tremendous amount of research in the last few years to give you an even brighter outlook toward the future.
3. Gather as much information about the illness and become knowledgeable about it. Ask questions.....Tell family and friends and mostly talk to other people in the same situation. You are not the only one! Many publications can be found on the internet. One good source is Amazon Books. Use their search function using cystic fibrosis. 4. Talk to other people with either CF or parents of children with CF. There are many exciting tips that you can learn from each other. 5. Seek out Cystic Fibrosis Centers
in New York, New Jersey or Pennsylvania... depending on
your location within the state (check with your insurance
company about out-of-state providers and in-network
providers if applicable). (example: the closest center in Northern NJ by
GW Bridge is Children's Hospital of New York (Columbia University)
The closest to the shore area is Monmouth Medical Center,
Long Branch, NJ. and the closest from southwestern New Jersey
would be Children's Hospital, Philadelphia.) A Certified CF center
is up-to-date on all the new treatments for CF, and
provides a team effort including a pulmonologist,
gastroenterologist, nutritionist, repiratory therapist,
nurses and social worker. Check CFF.org for a list of care centers around the countryThere are other individual
physicians within the state. Interview the center, ask
questions... get answers...feel comfortable with your
team of physicians ... this is a long term relationship! 6. Contact Special Child Health Services Case Management Unit within your county. Every "special child" with either a birth defector serious illness must be registered with SCHS. The main resource number is in Trenton at 609-984-0755. They can refer you to the office in your county. 7. Some financial guidelines for different programs are ridiculous...but some are not. The financial guidelines, you will see, can vary from poverty level to an average middle class family...don't get frustrated!!! 8. Read and know the policy benefits of your health insurance policy. Know your deductibles and lifetime maximum benefit on each of your policies. Remember that each policy is different, you may need referrals to specialists or have limited visits. 9. Sitting back and letting things happen doesn't get you anywhere. Don't feel sorry for yourself...get up...make yourself known and see how things in your life can turn around for the better. We will never say Cystic Fibrosis is easy, but... it will be a way of life for our children! Make their lives an easier place to be! 10. There was an excellent article in Scientific-American in December 1995. This is an excellent resource about CF. There is a cost of $5.00 but it is well worth it. Search cystic fibrosis at the top of the page and the article will appear. Then follow link. download item, Then click, I would prefer not to subscribe at this time, You are then in the Pay Per Issue option to Scientific American Digital. Fill in the info and you will have access to the article for a limited amount of time. 11. There are many clinical trials for new medications and therapies that can be very
promising. They might not be around the corner, so keep
with the treatment recommendations of your physicians.
Making Contacts Within The State of NJ...and others....... 1. State of NJ Health Department--Pharmaceutical: Assistance for children under the age of 18: There is a pharmaceutical drug program designed for children with Asthma and CF. There are financial guidelines. 609-777-7778 2. Women, Infants, Children (WIC): Designed for a healthy mother, healthy baby. Can provide help in affording special formulas and Pediasure. There are financial guidelines. This is a true government program. Call the Family Health Line for a WIC referral at 800-328-3838. 3. NJ Welfare Programs: Call the Welfare Agency in your county and speak with a caseworker about the programs you may be entitled to. Some programs include: Medicaid, Assistance to Families With Dependent Children, Food Stamps, Energy Assistanceand more. Financial and personal documentation are required. Bergen County: 201-368-4200. 4. Individual Health Insurance (under NJ's recent health care reform): This is for those who cannot be covered under a group plan and for the self-employed. Call 800-838-0935 and ask for the NJ buyer's guide for health insurance. 5. New Jersey State Organization of Cystic Fibrosis (NJSOCF): Adult Grant Administrators 201-595-1003. Although they say theyhelp under 18, I do not personally know anyone under 18 being helped by this organization. They administer the adult (over 18) CF Grant. If there are any questions the NJSOCF cannot answer with reference to the Adult Grant, see #7...the State of NJDepartment-Adult CF Grant. Do not confuse this organization with the Cystic Fibrosis Foundation...They are not affiliated! 6. State of New Jersey Health Department--Adult Grant: refer to above. Adult Grant is given as a state grant to individuals over 18 with CF. It provides help for nutritional supplements, medical supplies and drugs. It can also help with your out of pocket insurance deductible money up to $250. There are financial guidelines. Call 609-984-6137. 7. Medications: Check with a full service pharmacy in your area. The Cystic Fibrosis Services, Inc. (800-541-4959) is a discount pharmacy affiliated with the Cystic Fibrosis Foundation in Bethesda, Maryland. There are others that deal with cystic fibrosis patients. Ask your doctors. 8. Free Prescription Drugs: For information on free prescription drugs provided by pharmaceutical companies, call the U.S. SenateSpecial Committee on Aging. Call 202-224-5364 and request information on The Program to Help Older Americans Obtain Medication. Use this information to contact the appropriate drug companies and request information on their indigent patient programs. 9. Baby Formula: Is your child recommended for pre-digested formula: Progestimil? There is a program set up by the manufacturers Mead Johnson to help defray the cost of this expensive formula. Call 800-462-6323 for further information. 10. Pulmozyme®: Have you
or child been recommended to be on
Pulmozyme®. There is an Endowment
established by Genentech to assist
patients in obtaining Pulmozyme® and/or nebulizers used
to administer Pulmozyme®. Eligibility for the Pulmozyme®Endowment is based
on medical and financial need. Call 800-297-5557 for
further information. 11. High Calorie, Fat and Protein Food: Many companies have recently come out with high calorie, high protein shakes and candybars. They are available from Scandipharm, The CF Pharmacy and you might try GNC Stores or Vitamin Shoppe. Check other sources for recipes including Abbott Laboratories, (makers of Pediasure) and Scandipharm. 12. Comprehensive Care For CF Program: The Axcan-Scandipharm "Comprehensive Care Program for CF" is designed to help cystic fibrosis patients reduce the cost of therapy while providing a better quality of care. Program participants receive nutritional supplements, including ADEKs® vitamins and SCANDISHAKE® calorie rich shake mix. Instructions and enrollment forms are available from CF physicians or by contacting CF Services, Inc. 13. Catastrophic Illness in Children Relief Fund: The State of New Jersey has a catastrophic children's fund for financially draining illnesses. It is based on financial criteria, although the qualifications are very liberal. Call 800-335-FUND 14. Home Health Care Agencies: There are many home health care agencies state-wide. Be careful when choosing your agency. Find out what your insurance covers and negotiate out of pocket expenses. Try to choose an agency that deals with either Cystic Fibrosis or chronic illnesses, as they have a better understanding of the illness and might already have worked with your CF Center. 16. TOBI,®, Pathogenesis has set up
a toll-free number to call for all questions concerning
TOBI® and it's use, availablility and financial programs
available. Call 888-508-TOBI. Surviving Cystic Fibrosis In Other States
|
2. Talk
with your pediatrician. Chances are he/she may not be
aware of the recent strides made with CF and paint the
picture of gloom. That's not the way anymore!
World-Wide-Web:
There are many home pages available
that relate to Cystic Fibrosis. Here are a few to get you
started:
