Insurance problems

Kathleen - posted on 11/09/2009

Quoting Jenny:

Insurance problems

Anyone having problems with their insurance paying for meds and supplies? My 3 y-o has CF, epilepsy, a laryngeal cleft, aspiration, CLD, ect....she has a g-tube, on numerous meds, and has been to the Aerodigestive Clinic in Cincinnati and National Jewish in Denver. Our doctor tried to get Mallory a VEST but the insurance denied it...just like they deny her formula and supplies. They also argue paying for her Pulmozyme, Hypertonic Saline, and Tobi...anyone else going through this? We work and have been denied for governement assistance. We have anthem insurance.

Hi Jenny,

I am new in here. My son,with CF, is now 26!! He is working full time and has been since graduating college. We are blessed for that!! Jared has issues with his insurance, which is the same as Mallory's. When he was younger he did get govwernment assistance. I am a nurse so I made decent $,but his Dad and I were divorced in 1994 so Jared was able to have his Dad's ins. and Mainecare as secondary. Now that he is on his own, his copays are very high.

I really want to help him with this issue as he has enough on his plate,as I am sure you and your family know! I am so sad to hear that ins. company is denying your daughters vest,Tobi, Pulmozyme as I know how expensive these are. My son gets pretty aggravated when he is picking up his meds and hears what his copay is and ,as he describes"some dude next to me says"I don't have my 3 bucks copay for methadone" and then buys a pack of cigs!"

That made me feel so bad. It really does not seem fair that the insurance companies get away with denying items that keep our kids alive!! Here in Portland we have 2 meth. clinics. My being a nurse surely helps me to understand that these are better than the alternative drugs,but I definitely see Jared's reasoning VERY clearly.

I know it is exausting,but don't give up!! I kept bugging them when he was younger and did quite well. I always did the old fashioned CPT because Jared refused vest,as it was made available when he was older. He tallyed up his bill for the year,barring hospitalizations,and it comes to 84,784 dollars!! I am going to keep trying to find a way to help.

Sincerely

Kathleen

Beth - posted on 10/24/2009

Our saving grace has been our social worker. Through her we were able to connect with the right people to get our son his own insurance based on his income - nothing for a 5 year old. We still had to pay a $70 premium every month, but it was worth it to not have to pay a single penny for anything else. Also, check with your insurance to see if they have a specialist nurse for special needs issues. They will fight the red tape at the insurance company (use their own policies and words) to get them to understand your child's needs. That's how we got our vest for free. Good luck!

Kami - posted on 10/20/2009

That's a whole lot of stuff for one mom to deal with. Way to advocate for your kid. My insurance company denied the vest for my son, but with letters from the pulmonologist, the insurance company reversed the decision and saw the medical need for it. Insurance companys are infuriating and I think a lot of the initial denials are meant to "weed out" and frustrate us. It is a lot of obnoxious paperwork, but I bet there is some sort of appeal process you can go through. Good luck. It is amazing what a difference the vest has made for our son.

Jennifer - posted on 10/16/2009

Wow...I'm so glad I live in Canada. The government pays for all my son's care including all his medications and will for the rest of his life. I hope that Obama manages to change health care for you guys. It's ridiculous that you have to worry about insurance when it comes to your child's health and well-being. My thoughts and prayers are with you.

Christy - posted on 10/10/2009

The CF Foundation has free legal assistance to help with insurance issues. They may have some ideas. The lawyer who provides the advice has CF and she is full of wonderful advice.

Kristi - posted on 09/26/2009

I'm truly sorry for the situation you are in. My son is 7 yrs. old & is on state medicaid. It usually covers his basic meds., but sometimes we have to get prior approvals which mesns we have to wait to get the meds. & some things are not covered. (Hyper-sal) & I have to pay for that every month. sometimes there are other meds. that occasionally do not get covered. It can be scary at times.

However, if you ask your local CF clinic or checkout www.cff.org somwhere there's a link for the CF pharmacy & other pharmaceutical companies help CF patients get their meds. at no cost. You'll have to do your research, but there should be someone out there able to help you. As for The Vest...the Vest Company is truly amazing! My son's insurance did not cover the vest & I had no income to make payments. We filled out or income/tax info. they STILL gave us a vest at no cost. Whatever your financial/insurance situation, the vest company is soooo wonderful! They will set you up on a payment plan if you can afford it. They will not turn you away. Ask your CF clinic, social workers, etc. about it. Or try calling the company. I wish you the best success.

Have you tried applying for SSI? I'm going through the process myself. If your child is approved, she will automatically qualify for the state medicaid. But you may need to look into the details of this.

Good luck! Hang in there! It does get easier over time!