Health Gazelle: CF and Money

CF and Money

Cystic Fibrosis is a mind-bogglingly expensive condition to live with. The medical bills are very high, people with CF typically eat a lot more than average, and being sick all the time can make it impossible to work a full time job. This page is only just begun. There is more I plan to add. Please email me if you have other suggestions for this page.

Drugs and Medical Expenses

State Pharmaceutical Assistance Programs: Contains a clickable map of the U.S. When you click on a state, it lists what programs they know about for that state.
Drug Company Assistance Programs: This is part of the same website above but I thought it should be listed separately.
Parternship for Prescription Assistance: This website seems to have a lot of good information. For example, you can enter your zip code to find free and cheap clinics in your area.
Reaching Out Foundation: They offer Emergency Assistance, Insurance Assistance, Nutritional Assistance and Education (a quarterly Newsletter). Eligibility: "Currently, the families that go to the Children's Healthcare of Atlanta: Egleston and Scottish Rite and Medical College of Georgia. As more funds are raised, additional CF Centers will be added."

Mucomyst: Some people are allergic to Pulmozyne and unable to use it. Sometimes, Mucomyst is a good alternative. Mucomyst costs a great deal less than Pulmozyne. My best understanding is that this is not really a drug per se. It's also known as NAC (N-Acetyl-Cysteine). One of the things it does is promote glutathione in the body. Glutathione is critical to cell function. My best understanding is that glutathione tends to be out of balance in people with CF. So this likely has far fewer side effects than drugs typically do. I haven't personally tried it.
Nebulizing Hypertonic Saline: This is not a drug at all. You can get a prescription for it and can order sterile saline from a pharmacy but it has no drug side effects. Some people find this enormously beneficial. I have heard reports of people having fewer infections, needing fewer digestive enzymes, and needing less insulin after using this for a while. I have also heard some similar remarks from people who have tried Celtic Sea Salt. The topical application to the lungs definitely has short-term benefits that taking sea salt orally cannot replicate. This is a very hot topic item in the CF community and many people are big fans. It's quite affordable, unlike many of the drugs that get prescribed for CF.
Xylitol-Saline Nebulizer Solution: I have not used Pulmozyne, Mucomyst or Hypertonic Saline. But I have used this to help me stay out of the ER and off of antibiotics. I found xylitol-saline solutions to be far more effective than hypertonic saline for sinus washes. A friend developed a recipe for nebulizing it. I used it to very good effect for several months.
Guaifenesin: A well known brand of guaifenesin is Mucinex, which costs about $20.00 for 40 pills. (50 cents per pill) The pills also contain blue dye and other chemical additives that I react badly to. Someone else who reacts badly to Mucinex but does well on guaifenisen recommended CVS Pharmacy's brand of guaifenesin, called CVS Pharmacy Chest Congestion Relief. It costs me $9.99 for 50 pills (20 cents per pill) and does not cause me the nasty side effects that Mucinex causes for me. Since then, I also tripped across another off-brand in Kmart called Mucus Relief. Like the CVS Pharmacy brand of guaifenisen, it has no blue dyes or other additives to mess me up. It costs me $6.99 for 30 pills (23.3 cents per pill). If you have a military ID card, you can get a 10% discount on that (21 cents per pill).
Please note that both of these off brands are 400mg pills. Mucinex is 600mg per pill. I prefer the smaller dosage and the ability to easily cut them in half. But that does mean the per pill cost and the per dose cost are not the same thing. To get 600mg of CVS pharmacy gauifenesin, you need 1 1/2 pills, which is 30 cents instead of 20 cents. It's still a bargain. I also rounded and didn't add taxes either.
RXsaver.net: "A database of free available coupons, rebates and/or patient assistance programs for your prescription medication - Hundreds Listed! Most coupons & rebates can be used in conjunction with any private health insurance. To qualify for most totally free offers, you must have no prescription coverage."

I have heard that the coupon discount comes off of your out of pocket co-pay.
Medical Deductions: This is an article about what medical expenses are tax deductible.
United Healthcare Children's Foundation: As I understand it, they offer medical grants for families who are insured but who cannot afford to pay out of pocket for the portion their insurance doesn't cover. For U.S. residents only.