Spring 1999 Newsletter: Patient and Parent Perspectives

Patient and Parent Perspectives

Tips on Insurance

by a CF patient in her 20's

I think insurance is very important for families that have children with CF. I am currently on my dad's insurance and Medicaid. The way that I stay on my parents' insurance is by showing that they continue to cover 50% of my expenses.

In the last five years, lots of changes have occurred and many lessons have been learned.

1. Make sure you have good insurance before you get married. I learned that if I got married and my future husband exceeded the gross amount of income that was the cap of Medicaid at that time that I would lose my Medicaid. His insurance was a one year wait, which I knew that I could not do.

2. Check into your trial period of work if you are on Medicaid. There is actually a time period you can work and stay on Medicaid.

3. Look into the coverage to see if you are covered for lung transplants. I did not always think about this but now I am on the list. It is good to plan ahead.

4. Know the coverage of your medications. My dad's insurance pays for my medications but I still have a co-pay. Some insurances may have a high co-pay, may not cover all of your medicines, or may have a cap on what they pay.

5. Plan ahead and look into life insurance while the children are young. I just now started and it is a lot more expensive now. It would have been so much better to get on a plan as a child.

Although my husband did not have a health problem before he got insurance, he recently had a minor medical procedure done. It cost over $5,000 and after two years we are still paying on it. Be wise and check out all of your options in getting insurance.

Having Hope with Insurance, Work, and Cystic Fibrosis

by Brandi Thorpe

I am a college student and presently working at a bank. I started college in 1996 while working part time. I am currently working full time for a bank and have been since 1997. My school is paid for through Vocational Rehabilitation, so I decided to work to have money for fun, pay extra bills that may occur, and I just didn't think that having CF should keep me from working. I averaged going into the hospital four times a year during 1996 and 1997, but only twice in this past year. The people that I work for are very understanding. Almost all of October and November of 1997 was missed due to being sick or going in the hospital. I had employees say some things but the people that were the ones in control understood and stood beside me.

For the majority of my life, I have been on my parents' insurance. I am now on my own insurance because the bank offers such good options. They pay all but the deductible and a small amount each day. My last admission to the hospital cost me a little over $300. I contribute part of this to having such a good insurance policy, but also to having a wonderful case manager.

The main issue that is important to me is being honest. I told my employer up front in the interview that I had CF. My employer read up on CF and called me for the second interview to ask about the details. I was hired and since then have received two promotions for my performance. I realize not everyone will be as fortunate; but I truly believe that if you are healthy enough, work can be a positive influence to staying healthy.

Some Advice from a Big Family with Big Bills

by Debbie Brooks

I would suggest that you become very familiar with your insurance policy. If you are covered by a group insurance policy, learn about things such as procedures for hospital admits (some want it pre-approved, etc.), contact person, deductibles and co-pays, and caps. It is good to know these things beforehand, if possible. If you are changing jobs, know how they handle pre-existing conditions, i.e. waiting periods. If you must leave your job, leaving you without coverage, you have options, though sometimes limited.

The law requires that pre-existing conditions not disqualify you from the private insurance option. I found that the rates are up to triple that of a regular policy, and, at least at the time I was in the market, no one offered such a policy. Also, it does have to be acquired shortly after other policies are terminated.

COBRA Medicaid is available to those with qualifying income levels. The income requirements adjust based on family size. Medicaid covers prescription drugs. This one is not too difficult to apply for, and is easy to use. Disability is not available to minors, and they do not qualify under a parent's disability. For adults, it is based on the amount that has been previously paid into the system (via your paycheck). The dependents will qualify for the dependent benefit. This gives a monthly check and covers the child by Medicare, which, unlike Medicaid, does not cover prescription drugs. The criteria for qualification is a bit tougher than Medicaid. Persistence may be necessary for this one!

Of course, Children's Rehabilitation Services (CRS) is an excellent place to start. There are plenty of people at Children's Hospital who can point you in that direction. They cover all the CF related bills, including prescriptions, and they work with your individual income situation. You still may want to look into a "back up" policy for the non-CF things, though I am still having a problem locating anything along this line.

Supplemental Help to Insurance

by Shelby Hilliard

Insurance can be very helpful to families of children with chronic illnesses. Indemnity policies - also called sickness or dread disease policies - are good supplements for commercial group or individual hospital expense and surgical policies. This supplement pays a set rate for each day of a hospital stay. These types of policies usually pay $50 or more a day. This can be a good supplement for insurance policies.

When two parents work, they may have two insurance carriers. One company becomes the primary insurance provider, the other secondary. Be sure to check with your insurance policy to see if there are waiting period for pre-existing conditions and to make sure that cystic fibrosis is covered under your policy. Remember, these policies will not work with Medicaid. (Knowing this has been very helpful to us because when the rate of hospital visits go up, the bills automatically follow).

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