Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 report it.We are hearing this in spotted cases & I am sure they want to know also. It sure starts a bad opinion . You know they say, One rotten apple , can spoil the bunch......You should have the best for your child AND he doesn't sound like he is the best for you LOVE & HUGS GRANDMOMBEV HMO Hell! I posted a message about a month ago about medical care and cf infants. Several people responded with the very good advice to find a CFF Care Center. Unfortunately, the pulmonologist that the Cystic Fibrosis Foundation has accredited in our area is very uninformed about cystic fibrosis in infants. On our first visit he told us our son only had a mild case of cf, that cpt is trivial if the child stays active, and told me to " talk to my pediatrician about Zach's acid reflux " because he only handles cf problems. My pediatrican has stated bluntly that " CF is out of my league " . He also did not even ask about Zach's enzyme dosage or his cpt schedule. We eventually found out that Zach's enzyme dosage was too low and he was having malabsorption issues, not acid reflux. I immediately had my pediatrician do an out of network referral to a pediatric pulmonologist. It was denied. We are appealing the decision, but will not have an answer before Zach's next clinic visit. I am curious if it is possible to let someone at the Cystic Fibrosis Foundation know that one of their " accredited " doctors is spouting inaccurate information. I am sure this man is a qualified pulmonologist, but he is not qualified to be treating cf infants. It is because of this doctor's affiliation with the Foundation that the insurance company will not consider it a medical necessity for Zach to be treated elsewhere. Am I wrong here? Any advice would be appreciated. Sara - mommy to Zach 14 months wcf ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Who should I report this to at the Foundation? Is there a particular department that deals with this or should I call the 1- 800 number? Thanks for your advice. Sara > > report it.We are hearing this in spotted cases & I am sure they want > to know also. It sure starts a bad opinion . You know they say, One > rotten apple , can spoil the bunch......You should have the best for > your child AND he doesn't sound like he is the best for you > > LOVE & HUGS > GRANDMOMBEV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 1-800-fightCF.ask for someone who is involved with the CFF clinics.they should let you speak to someone & that person will most likely pass the info on. But they will want to know-whether they do anything -I don't know Love & hugs, GRDMBEv Re: HMO Hell! Who should I report this to at the Foundation? Is there a particular department that deals with this or should I call the 1- 800 number? Thanks for your advice. Sara > > report it.We are hearing this in spotted cases & I am sure they want > to know also. It sure starts a bad opinion . You know they say, One > rotten apple , can spoil the bunch......You should have the best for > your child AND he doesn't sound like he is the best for you > > LOVE & HUGS > GRANDMOMBEV ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Thanks for the info. All I can do is tell my story and hope for the best. We have found a pediatric pulmonologist who will see Zach if the insurance denies us. He is at an accredited cf center too. It is three hours away, but it would be worth it. We would have to pay for the doctor out of our own pockets, but I can't sleep at night knowing that Zach's medical needs are not being met. Sara > > > > report it.We are hearing this in spotted cases & I am sure they > want > > to know also. It sure starts a bad opinion . You know they say, One > > rotten apple , can spoil the bunch......You should have the best > for > > your child AND he doesn't sound like he is the best for you > > > > LOVE & HUGS > > GRANDMOMBEV > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Great to see him. maybe he can in a politically correct way, let the powers that be -know why you had to come there ...........best wishes LOVE & HUGS GRDMBEV Re: HMO Hell! Thanks for the info. All I can do is tell my story and hope for the best. We have found a pediatric pulmonologist who will see Zach if the insurance denies us. He is at an accredited cf center too. It is three hours away, but it would be worth it. We would have to pay for the doctor out of our own pockets, but I can't sleep at night knowing that Zach's medical needs are not being met. Sara > > > > report it.We are hearing this in spotted cases & I am sure they > want > > to know also. It sure starts a bad opinion . You know they say, One > > rotten apple , can spoil the bunch......You should have the best > for > > your child AND he doesn't sound like he is the best for you > > > > LOVE & HUGS > > GRANDMOMBEV > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 I would definitely report it. I would also call the insurance company and talk to somebody IN CHARGE--NOT just one of the people who answer the phone and say that it will be " looked into " . And call OFTEN!! This advice comes from lots of experience! LOL LOL Try to always be polite, of course, BUT....if they are rude to you, you have every right to complain about that to another person there. Try having your regular pediatrician write a letter to them stating the need for a doc that specializes in infants with CF, if he will, too. Also, document each and every call to them, and each and every call and visit to the doctor, and anything that negative that results from the doc not doing something or doing the incorrect thing. The more facts you can throw at them, the better. Good luck! S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf) HMO Hell! > I posted a message about a month ago about medical care and cf > infants. Several people responded with the very good advice to find > a CFF Care Center. Unfortunately, the pulmonologist that the Cystic > Fibrosis Foundation has accredited in our area is very uninformed > about cystic fibrosis in infants. On our first visit he told us our > son only had a mild case of cf, that cpt is trivial if the child > stays active, and told me to " talk to my pediatrician about Zach's > acid reflux " because he only handles cf problems. My pediatrican > has stated bluntly that " CF is out of my league " . > He also did not even ask about Zach's enzyme dosage or his cpt > schedule. We eventually found out that Zach's enzyme dosage was too > low and he was having malabsorption issues, not acid reflux. I > immediately had my pediatrician do an out of network referral to a > pediatric pulmonologist. It was denied. We are appealing the > decision, but will not have an answer before Zach's next clinic > visit. > I am curious if it is possible to let someone at the Cystic Fibrosis > Foundation know that one of their " accredited " doctors is spouting > inaccurate information. I am sure this man is a qualified > pulmonologist, but he is not qualified to be treating cf infants. It > is because of this doctor's affiliation with the Foundation that the > insurance company will not consider it a medical necessity for Zach > to be treated elsewhere. > Am I wrong here? Any advice would be appreciated. > > Sara - mommy to Zach 14 months wcf > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Hi , We have been working with a nurse case manager since Zach's diagnosis. She has been quite helpful until today. I asked if we could get a referral to another pediatric pulmonologist that is listed in our HMO provider directory. She explained that the provider directory book is very " confusing " and that the lousy doctor we already have is the only doctor we can go to in-network. She reminded me that we are welcome to pay for these services out of pocket. Big help. My pediatrician and the pediatric pulmonologist, that we want Zach to see, both wrote letters emphasizing that it is very important that Zach sees a doctor who understands the special needs of cf infants. My husband and I even wrote a letter documenting 7 concerns we had during our visit with the lousy doctor. With all of that documentation we were still denied. I am contacting our state department of insurance if our appeal is also denied. In the mean time, we may pay for Zach's care out of pocket. Thanks for your advice. I will start documenting the phone calls. That is something I have not been doing. Sara - Mommy to Zach 14 months wcf -- In cfparents , " " <codybug@C...> wrote: > I would definitely report it. I would also call the insurance company and > talk to somebody IN CHARGE--NOT just one of the people who answer the phone > and say that it will be " looked into " . And call OFTEN!! This advice comes > from lots of experience! LOL LOL Try to always be polite, of course, > BUT....if they are rude to you, you have every right to complain about that > to another person there. Try having your regular pediatrician write a > letter to them stating the need for a doc that specializes in infants with > CF, if he will, too. Also, document each and every call to them, and each > and every call and visit to the doctor, and anything that negative that > results from the doc not doing something or doing the incorrect thing. The > more facts you can throw at them, the better. > > Good luck! > S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Sara, Document EVERYTHING! keep a record of the time you called, who you spoke to, every question you ask and every answer and what time the calls ended. Also document every call with the clinic and anyone else you speak to regarding any thing CF related. keep copies of anything you send to anyone. Find out why there is another pediatric pulmonologist listed in the directory if you can't go to him. Also why it is so " confusing " these are supposed to be reference materials for the customer, not brain surgery manuals. Ask for copies of the letters that both docs wrote for you. If you pay for Zach's care out of pocket make sure you keep all the reciepts, the insurance company may have to pay you back! One thing that is effective is this, tell them that you are sure that zach will end up in the hospital if he continues to be seen by someone who is not used to handling CF infants..a hospital stay of less than 2 weeks for my daughter costs somewhere around $20,000. That's a lot of cash..... Also if you do not get a satisfactory answer to your question or request ask to speak to a supervisor. If one is not available ask to speak to that supervisor's supervisor. Don't take " I don't know why " or " no " for an answer. Also they usually have " member advocates " or something like this title who can help too. Hope I've helped Re: HMO Hell! Hi , We have been working with a nurse case manager since Zach's diagnosis. She has been quite helpful until today. I asked if we could get a referral to another pediatric pulmonologist that is listed in our HMO provider directory. She explained that the provider directory book is very " confusing " and that the lousy doctor we already have is the only doctor we can go to in-network. She reminded me that we are welcome to pay for these services out of pocket. Big help. My pediatrician and the pediatric pulmonologist, that we want Zach to see, both wrote letters emphasizing that it is very important that Zach sees a doctor who understands the special needs of cf infants. My husband and I even wrote a letter documenting 7 concerns we had during our visit with the lousy doctor. With all of that documentation we were still denied. I am contacting our state department of insurance if our appeal is also denied. In the mean time, we may pay for Zach's care out of pocket. Thanks for your advice. I will start documenting the phone calls. That is something I have not been doing. Sara - Mommy to Zach 14 months wcf -- In cfparents , " " <codybug@C...> wrote: > I would definitely report it. I would also call the insurance company and > talk to somebody IN CHARGE--NOT just one of the people who answer the phone > and say that it will be " looked into " . And call OFTEN!! This advice comes > from lots of experience! LOL LOL Try to always be polite, of course, > BUT....if they are rude to you, you have every right to complain about that > to another person there. Try having your regular pediatrician write a > letter to them stating the need for a doc that specializes in infants with > CF, if he will, too. Also, document each and every call to them, and each > and every call and visit to the doctor, and anything that negative that > results from the doc not doing something or doing the incorrect thing. The > more facts you can throw at them, the better. > > Good luck! > S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 I have two questions...How many kids do you have (you might need to borrow some) and how far away is the nearest office for your HMO? I had trouble with our insurance at one time. I eventually stated the problem to the supervisor who could have really cared less. I then informed him that I wanted an appointment with his superior. I was sure He could handle the problem. If there weren't any appointments available I would be happy to sit in the waiting room with my four kids (then 5, 4, 28 months, and 2 months) until we got a chance to talk to him. I told him of all the fun we could have with our play doh, cheetos and various other messy items. He bakced off problem was fixed and we never had another problem with them. Too bad we have a different provider now that hubby has a different job. ;-) Dawn mom of 4, 7 and under, the youngest wcf From: ANDREA FITTING To: cfparents Sent: Friday, April 25, 2003 4:31 PM Subject: Re: Re: HMO Hell! Sara, Document EVERYTHING! keep a record of the time you called, who you spoke to, every question you ask and every answer and what time the calls ended. Also document every call with the clinic and anyone else you speak to regarding any thing CF related. keep copies of anything you send to anyone. Find out why there is another pediatric pulmonologist listed in the directory if you can't go to him. Also why it is so " confusing " these are supposed to be reference materials for the customer, not brain surgery manuals. Ask for copies of the letters that both docs wrote for you. If you pay for Zach's care out of pocket make sure you keep all the reciepts, the insurance company may have to pay you back! One thing that is effective is this, tell them that you are sure that zach will end up in the hospital if he continues to be seen by someone who is not used to handling CF infants..a hospital stay of less than 2 weeks for my daughter costs somewhere around $20,000. That's a lot of cash..... Also if you do not get a satisfactory answer to your question or request ask to speak to a supervisor. If one is not available ask to speak to that supervisor's supervisor. Don't take " I don't know why " or " no " for an answer. Also they usually have " member advocates " or something like this title who can help too. Hope I've helped Re: HMO Hell! Hi , We have been working with a nurse case manager since Zach's diagnosis. She has been quite helpful until today. I asked if we could get a referral to another pediatric pulmonologist that is listed in our HMO provider directory. She explained that the provider directory book is very " confusing " and that the lousy doctor we already have is the only doctor we can go to in-network. She reminded me that we are welcome to pay for these services out of pocket. Big help. My pediatrician and the pediatric pulmonologist, that we want Zach to see, both wrote letters emphasizing that it is very important that Zach sees a doctor who understands the special needs of cf infants. My husband and I even wrote a letter documenting 7 concerns we had during our visit with the lousy doctor. With all of that documentation we were still denied. I am contacting our state department of insurance if our appeal is also denied. In the mean time, we may pay for Zach's care out of pocket. Thanks for your advice. I will start documenting the phone calls. That is something I have not been doing. Sara - Mommy to Zach 14 months wcf -- In cfparents , " " <codybug@C...> wrote: > I would definitely report it. I would also call the insurance company and > talk to somebody IN CHARGE--NOT just one of the people who answer the phone > and say that it will be " looked into " . And call OFTEN!! This advice comes > from lots of experience! LOL LOL Try to always be polite, of course, > BUT....if they are rude to you, you have every right to complain about that > to another person there. Try having your regular pediatrician write a > letter to them stating the need for a doc that specializes in infants with > CF, if he will, too. Also, document each and every call to them, and each > and every call and visit to the doctor, and anything that negative that > results from the doc not doing something or doing the incorrect thing. The > more facts you can throw at them, the better. > > Good luck! > S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 Write a letter to Bob Beale, the CFF President, or better yet, pick up the phone and call him at 1-800-FIGHTCF. You should be able to get through to him, just tell the secretary that you are a CF parent. I did this several years ago, and got right through to him. Good Luck, Amber Nick's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 What state do you live in? In California there are 2 programs, one is CA Children's Services, or CCS, for families who make under 40K/yr, the other is GHPP, Genetically Handicapped Persons Program, this is for families who make over 40K/yr, or for the adult who is 21 and over. these programs pay for what the insurance companies don't. Check if your state has similar programs to help you out with the bills, or try changing your PMG to be associated with the other CF center 3 hours from your home. Amber Nick's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 Thanks for the info, but our great state of Illinois has already turned us down for any financial assistance. We are at the mercy of the HMO. We are considering moving. My husband is a federal employee and he can transfer if there is a job opening. It would be heartbreaking to leave all of our friends and family, but the HMO has left us no choice. Zach's health care must be a priority over anything else. Sara -- In cfparents , misybailey1@a... wrote: > What state do you live in? In California there are 2 programs, one is CA > Children's Services, or CCS, for families who make under 40K/yr, the other is > GHPP, Genetically Handicapped Persons Program, this is for families who make > over 40K/yr, or for the adult who is 21 and over. these programs pay for > what the insurance companies don't. Check if your state has similar programs > to help you out with the bills, or try changing your PMG to be associated > with the other CF center 3 hours from your home. > > Amber > Nick's mom Quote Link to comment Share on other sites More sharing options...
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