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princess23andmore Find out more about princess23andmore
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  • Still needing reassurance

    I thank you for all your responses on screening. New spin on the question. My boys are 4, soon to be 7 & 7. My daughter was 9 in September. Our pediatrician referred all of them for screening at my request. Our insurance usually does not pay for anything preventive (i.e. annual exams, etc.). My husband is calling them today because we received the paperwork from the pediatric cardiologist yesterday. It will be $200 each just to see the doctor plus the cost of any tests up front. I am calling the cardiologist office today to see if they think all of them should be screened this early. My mom (who just learned she has this) said that even if they do learn my young ones have it, there would be no treatment indicated at this age. My question is, if our insurance will not pay for any of it, should we still have all of them screened? I know $ is not the most important issue, but that is a lot of money which puts a strain on our already stressed family. Would like your imput. Thank you
    Jennifer

  • #2
    Jennifer

    If i were you i would call Lisa she is great with dealing with this type of thing, but i think there is something in most insurance companies that talk about chronic illnesses mine does and i have healthkeeper and they pay they don't like too but i kept appealing it and they can't refuse it if your doctor orders it (PCP), I mean try it what have you got to lose,get your family doctor involved, the kids need to be screened, I wish you the very best and take care ok

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

    Comment


    • #3
      I think I would start with the 9 year old. You could screen him/her first, as he/she is oldest, to get a baseline echo and EKG. You can start the others at about 9 also. Your mother is wrong, though, if she thinks that they wouldn't do anything if your child was diagnosed. It's highly possible that they would start him/her on meds. We're here for any and all questions.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

      Comment


      • #4
        Hi Jennifer,
        If I may be so bold, I would suggest getting a copy of the insurance policy itself – not just the extracted version, and check it for what it does and does not cover.

        If the testing is covered I would apply for each of the children, and if it is denied initially I would appeal and quote the policy coverage to them. If, on the other hand the insurance does not cover preventative medicine I would strongly suggest changing the insurance policy to a new coverage or a new insurance company.

        It seems to me that a health insurance policy that does not cover preventative medicine is like building a car without breaks. After all, brakes do not help the car go.
        Burt

        Comment


        • #5
          As a rookie here, I agree with Jim. I think your childrens' pediatrician should advocate too to have this done as a preventative measure or a baseline for your kids. We were very fortunate that our doctor was willing to stand up to our insurance company and get approval for the echoes for both of our boys, based on family history. I think its sort of like SSI and SSDI, a lot of insurance companies may reject a request at first, but will change that if they are challenged.
          Jill

          mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

          Comment


          • #6
            treatment and prevention

            I'm going to suggest first checking your policy to see how they define "prevention."

            You can't prevent HCM any more than you can prevent blue eyes, so testing for it shouldn't be exempt. If you thought you had cancer, they would pay for that testing, right? Same deal. At least, that is the tack to take if they try and say otherwise.

            Also, don't put the cart before the horse on treatment. The reason to screen for HCM in kids is so that you can keep them from playing basketball, baseball, and other sprint-based sports that have a nasty way causing sudden death.

            If they also end up needing medication for symptoms, then that is a river to cross when/if need be.

            If my tone here is harsh, it is only because it angers me so to hear that insurance companies won't pay for prevention. Hello! If they paid for preventative stuff, then maybe they'd pay less for treatment and then it wouldn't cost $400 a month for basic insurance. Penny wise, pound foolish.

            You can also ask your doctor's office if they have a "self-pay" discount. If you are cutting a check on the spot, you may get half off (I've seen it happen).

            And most doctors are happy to draft letters to insurance companies supporting tests, etc, when needed.

            If possible, set up a Medical Spending Account through your job or your husband's so that money is taken out pre-tax and whenever you spend money on health care, you get that money back.

            take care,

            S

            Comment


            • #7
              They aren't going to pay

              Thanks for all your support, again! Well, the insurance provider told my husband they would not pay for one dime of it for the children or me. They said it was considered "routine" and that it was not covered. I told my husband I don't know anyone who "routinely" sees a cardiologist who doesn't have a heart problem. HELLO! What are they thinking. I left a message with the ped. cardiologist office and hope they call me back tomorrow. The doctor wants everything, including tests which they do at their office, paid for the day of your visit. They take charge cards, so if we want to drop $4000 (approximately) on our charge card that day, they will gladly let us. I am angry because as a mother I shouldn't be made to feel like I have to choose between my childrens' welfare and financial burden. As far as changing insurers, I appreciate the suggestion, but my husband's company is self insured and there are no other options. To buy our own would be very expensive. My company does not provide benefits to employees in my position.

              I feel very frustrated. I can call them or our pediatrician can try. Should we take them to the pediatrician to see if he can hear a heart murmur? Does that usually occur with HCM? Any advice would be appreciated once again!
              Jennifer

              Comment


              • #8
                I don't see how they can call it "routine" with a family history. I think the pediatrician advocating for it is your best bet! If you explain the family history and the problem, I'll bet he can work on it for you. GOOD LUCK![/quote]
                Jill

                mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

                Comment


                • #9
                  Keep fighting. Not all with HCM have murmurs, but some do. You can start there.

                  Reenie
                  Reenie

                  ****************
                  Husband has HCM.
                  3 kids - ages 23, 21, & 19. All presently clear of HCM.

                  Comment


                  • #10
                    Whew! This should help get all of our blood pressures up!

                    I am 100% with Sarah. This is NOT preventative medicine. Let's picture this... If you have a car accident and the doctor orders an x-ray to see if you broke your foot, is that preventative medicine???? No, of course not. In the same way, an echo to see if you have HCM is not preventative medicine, it is diagnostic. Screening a large population to see if anyone happens to have any heart problem could probably be termed preventative, but screening a family in which the gene is known to occur is diagnostic.

                    I also strongly agree with the idea of getting your family doc or pediatrician involved. You mentioned asking the pediatrician to listen for a murmur. That is a good idea, but probably would not really answer the question. Many people with HCM have a murmur, but many do not. Certainly if there is a murmur, your insurance company would have to pay for the follow-up tests. Perhaps you could also ask the pediatrician how much an ekg would cost. These are usually quite inexpensive and would be a good first line of checking. If there is ANY abnormality at all, the kids could then be screened with an echo as a follow-up to an identified problem. This is just a thought and may upset a few people who correctly would say that an ekg is not the best diagnostic tool for HCM. But, there are some reports that have been posted on this site that indicate that Italian doctors are recommending ekg's as good broad screening tools.

                    I hope some of this helps.

                    I do have one further question and comment. I believe it was you who asked if your children could have HCM if you did not. I do not recall anyone specifically answering your question. Basically the correct answer is "No." Your children cannot inherit a gene neither you nor your husband gave them. However, the genes associated with HCM may sometimes have incomplete impenetrance, which basically means that such genes are not fully expressed in all people who have them. Secondly, there is great variation in the age at which HCM genes are expressed. Thus, your children could, as I see it, show signs of HCM before you do.

                    That leads me to the question for others reading this who have more info: Do we then recommend testing for grandchildren when the parent has not been diagnosed? As I see it, this is very relevant to this thread, because, if we do not, then the answer is for "princess23and more" to get herself tested and wait to get the kids tested. Perhaps the insurance company would regard this as less speculative and be more willing to cover it.

                    What is the position on screening grandchildren?

                    Rhoda

                    Comment


                    • #11
                      Re: Still needing reassurance

                      Originally posted by princess23andmore
                      "Our insurance usually does not pay for anything preventive (i.e. annual exams, etc.)."

                      Originally posted by princess23andmore
                      “Well, the insurance provider told my husband they would not pay for one dime of it for the children or me. They said it was considered "routine" and that it was not covered.”

                      Let’s see now – the insurance does not cover anything preventative, and they do not cover anything that is routine either? That’s like saying we offer accident insurance for falling off a tall building, but we do not cover anything that happens by your hitting the ground.

                      Jennifer, you’ve got to get a copy of the actual policy and see exactly what it covers in black and white. Then you can go to your doctor and have him/her order the echo’s under the covered provisions of the policy – whatever they may be. The clerks at the insurance company are trained to say, “No. Not covered. Go away.” It’s the wording of the policy that counts, and that’s what you can hold them too.
                      Burt

                      Comment


                      • #12
                        I will get a copy of the policy, Burt, Thank you. I do know that if there is an accident they pay 100% and when my twins were born the bill was $30,000 and our part was $2000, not bad. However, they only allowed 4 well baby visits and when I explained they were preemies and we exhausted that in the first 2 months, they said," then I'll guess you'll pay for them yourself". I don't know why this is their policy. They are more like the old indemnity companies. I will be getting in touch with the pediatrician.

                        I am interested in the question of waiting until I see if I have it. I am 33 and have not experienced any problems. I occasionally have tightness in my chest, but I have always assumed it was anxiety when it happened. If I don't have it at 33, I know I should be checked every 5 years or if I have problems, but would my children still need to be checked? Thank you for your help.
                        Jennifer

                        Comment


                        • #13
                          Hi Jennifer,
                          Yeah, for adults that are not experiencing any HCM related problems the period for rechecking is about every five years. With children, especially in their teens when it is reasonably common for the condition to emerge, it is prudent to check about every other year. Of course if they participate in sports, the best idea is for them to be checked each year, before the playing season. (Kind of a lot isn’t it.)

                          Now about your insurance policy. When you check the actual wording and limitations spelled out, you might think about other possibilities, especially in the situation in which you now find yourself. When I was still working, the company offered a couple of policies from which to choose, and they paid a portion of the premiums. They also had a plan where you could opt for none of the policies, keep the portion that they contributed to the premiums and buy your own insurance elsewhere.

                          It sounds to me like your husband’s company has made an agreement with the cheapest company in the area. If there are others in the plan who are also dissatisfied, you might be able to build your own group and obtain the volume discount on a different coverage. With this information, I expect you would be able to approach your husband’s company and get them to agree to contribute an equal amount to the coverage that they now contribute to the current policy. Of course you would expect to be paying a greater amount for the better policy yourself, but then you would be getting better coverage from them.

                          Please let me know how things work out.
                          Burt

                          PS - This would be the best time to look into life insurance policies also. Once the ball starts rolling on that score the oportunities dry up and the ones you can still get require astronomical premiums.
                          Burt

                          Comment


                          • #14
                            you first!

                            Dear Jen

                            Get yourself an echocardiogram asap and if you the policy is "catastrophic only" then yeah, you will be paying for it yourself. It sounds like that may be what you have, I'm sorry to say, but still worth double-checking.

                            You need to check out your "chest tightness" for sure and then do the kids in oldest first order.

                            The genetics of HCM are that it has an exception to every rule, so there is a tiny chance one of the kids gets it when you don't, but odds are that if you are clear, they should be clear, but HCM is such a b*@%$ that you can never be sure. Truly, there are not many diseases that anger me more.

                            Take things one at a time and be sure you have life insurance on yourself befrore you get screened if you have not. You will be declined with HCM on your record.

                            good luck,

                            S

                            Comment


                            • #15
                              Thank you for all your responses. I have about $300,000 in life insurance coverage, but right now I can't remember how long it is locked in. I should probably up it and extend the guaranteed period, I guess.
                              My husband's company has its own internal health insurance that is not bought outside. It is a worldwide company, but frankly my husband is in managment locally and he knows that the corporate office's opinion is that if people aren't happy with their coverage they can leave. Also that if too many people complain, they will do away with insurance all together. Anyway, I learned that we can get help from the Commission for Children's Health Care for the first appointment for the children. Mine will be out of our pocket unless my doctor can give a diagnosis to warrant it. That is okay, I am just relieved that we will be able to all be screened. I go to see my family doctor tomorrow. Your prayers are welcomed. God Bless you all, you are a real comfort.
                              Jennifer

                              Comment

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